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School of Health and Population Sciences

West Midlands Central Health Innovation and Education Centre

(WMC-HIEC)

Chronic Kidney Disease Theme

Report to the West Midlands Specialist Renal Commissioners

Project Implementation Group:

Increasing the Uptake of Home Therapies

Report Authors:

Jackie Beavan

Dr Sarah Burke

Dr Ian Davison

Dr Vickie Firmstone

Dr Robin Gutteridge

Dr Gary Thorpe

Report Contributors:

Cathy Kitchen

Lead author and contact for correspondence:

robin.gutteridge@wlv.ac.uk

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Acknowledgements:

This work was funded by the West Midlands Central Health Innovation

Education Cluster (WMC-HIEC).

The authors wish to thank:

Members of the West Midlands Renal Network and West Midlands Specialist

Commissioners for Renal Services for assistance and support.

Yulander Charles from the WMC-HIEC and Hayley Gresswell from the

Specialist Commissioning Team office for administrative and organisational

support.

All members of the WMC-HIEC team who contributed.

Most of all, we would like to pay tribute to all the staff in Renal Centres who

gave their time and expertise so generously. Their enthusiasm, dedication

and determination to achieve excellence was completely evident at all times.

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Terminology: Conventions adopted:

Chronic Kidney Disease (CKD) is considered a long term condition.

The term CKD has been used to describe the entire patient pathway

from initial diagnosis of kidney disease:

[a condition] that cannot be cured but can be managed through medication and/or therapy (DOH 2011)

End Stage Renal Disease( ESRD) has been used to describe Stages

4 and 5 of the CKD pathway as described in the NICE guidelines

(2008):

Table 1. Stages of chronic kidney disease

Stage Glomerular filtration rate: GFR (ml/min/1.73 m2)

Description

1 > 90 Normal or increased GFR, with other evidence of kidney damage

2 60–89 Slight decrease in GFR, with other evidence of kidney damage

3A 45–59 Moderate decrease in GFR, with or without other evidence of kidney damage

3B 30-44

4 15–29 Severe decrease in GFR, with or without other evidence of kidney damage

5 < 15 Established renal failure

(Taken from NICE 2008)

Renal Replacement Therapy (RRT) includes all the modalities which

may be available including all the forms of Haemo- and Peritoneal

Dialysis

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Contents

Pages

Section 1: Executive Summary 5 - 9

Section 2: Introduction 10-12

Section 3: Context and literature review 13-33

Section 4: Method 34-37

Section 5: Results 38-68

Section 6: Analytic commentary 69-93

Section 7: Conclusions and recommendations for further work 94-107

Figures and tables:

Table 1: Stages of chronic kidney disease 3

Figure 5.1: RRT Modality by Centre 39

Figure 5.2: Basic pathways for CKD Stages 4 & 5(ESRD) 66

Figure 6.1: Summary of factors related to increasing home therapies in Renal

Centres in the West Midlands 70

Figure 6.2: Suggested patient flow diagram 73

Figure 6.3: Porter‟s Five Forces Model applied to the systemic factors

influencing the take up of home therapies 91

Figure 7.1: Matrix to show different forms of helping which influence approach

to communication 102

References: 108-118

Appendices:

Appendix 1: Initial visits: information gathering proforma 119-120

Appendix 2: Information sheet for participants in the follow-up interviews 121

Appendix 3: Interview schedule: Lead nurses 122-124

Appendix 4: Interview schedule: Renal Technicians 125-126

Appendix 5: Interview schedule: Clinicians 127-128

Appendix 6: Collated raw data: renal technician responses 129-133

Appendix 7: Programme WMC-HIEC CKD Stakeholder Seminar 134

Appendix 8: Summary evaluation WMC-HIEC CKD 135-137

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Section 1. Executive Summary

Introduction

This Executive Summary sets out the main findings from a consultation

project focussed on increasing the uptake of home therapies for patients with

chronic kidney disease (CKD) in the West Midlands. It was undertaken

between March and September 2011 by a team from the West Midlands

Central Health Innovation Education Cluster (WMC-HIEC) with Renal Centres

in the West Midlands.

There is research evidence that home dialysis for people with kidney failure

results in increased life expectancy, a better quality of life, and cost savings

compared with dialysis provided in satellite or hospital settings. Also, the

importance of informed patient choice and care closer to home are

consistently promoted in NHS policy. The Department of Health recommends

that home haemodialysis (HHD) should routinely be offered as part of a full

menu of renal replacement therapy options, including transplantation,

peritoneal dialysis and conservative management.

Overall, the percentage uptake of home therapies is considered to be too low.

Therefore, the funders of kidney services in the West Midlands (the West

Midlands Specialised Commissioning Team) developed an ambitious plan to

increase the uptake of home dialysis in the West Midlands. A Commissioning

for Quality and Innovation payment (CQUIN)1 was introduced to incentivise

the Renal Centres to increase their delivery of home therapies to 35% by

2015.

The overall purpose of this consultation project was to understand NHS staff

views on increasing the uptake of home dialysis for adult patients with chronic

kidney disease (CKD).

The consultation specifically aimed:

1 The Commissioning for Quality and Innovation (CQUIN) payment framework enables

commissioners to reward excellence by linking a proportion of providers‟ income to the

achievement of local quality improvement goals (DOH 2008)

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1) To explore NHS staff views about the uptake of home dialysis in each

participating Renal Centre

2) To explore NHS staff views towards the CQUIN target and identify how

each participating Renal Centre is working towards this goal

3) To investigate the haemodialysis equipment and technical capacity of

each Renal Centre and its impact on home dialysis uptake

4) To identify and better understand the flow of CKD patients taking up

dialysis at each Renal Centre

5) To understand the provision of education and support to staff, patients

and carers

6) To enquire about the numbers of CKD patients and the proportion

taking up home dialysis at each Renal Centre

Method Initial visits to the West Midlands Renal Centres were conducted between

March and June 2011 to establish access and collaboration. Together with a

review of the research evidence, these visits also informed the design of three

follow-up phases of data collection with the Renal Centres. These comprised

short semi-structured telephone interviews with:

i) lead nurses,

ii) clinicians responsible for patient flow data, and

iii) renal technicians.

These interviews took place in August and September 2011. Ethical approval

was awarded by the University of Birmingham Ethics Committee (ERN_10-

0199).

Key Findings

Initial visits to six of the Renal Centres highlighted that each had a distinctive

culture and mix of caseload. All Centres were seeking ways to achieve the

CQUIN target and to expand their PD and HHD services. Some Centres had

established new posts specifically for this purpose, and all Centres were

undertaking a range of approaches for increasing the uptake of home

therapies.

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Discussion at the visits highlighted a range of perceived barriers to the uptake

of home therapies which were closely aligned to those identified in the

literature review. These included: clinician and patient communication; lack of

social support for some patients; risk averse culture; clinician and patient

resistance to change; resource and budgetary constraints; need for consistent

early pre-dialysis preparation; lack of training space; and patient concerns.

Some staff were unsure about the exact terms of the CQUIN and felt

concerned that the revised commissioning specification should not be a set of

clinical guidelines, but assist them in constructing business cases for their

Trusts.

The main findings from the follow-up interviews with doctors, nurses and

technicians can be distilled into five main themes:

1. Commitment of renal staff

The huge commitment of doctors, nurses and technicians to patient

care and increasing the uptake of home therapies was evident. Regular

team meetings, new staff appointments and numerous initiatives all

point to a huge effort to increase home therapies. The pace of change

and enthusiasm of consulted staff were impressive. Arguably to make

the increases in home therapies sustainable, there should be a shift

from innovation to embedded change. Although some innovations

were at a relatively early stage, staff perceived that increases in patient

numbers receiving home therapies would continue to rise.

2. The CQUIN target

All centres are signed up to increasing home therapies. The CQUIN

was certainly seen to be focussing resources and energy on increasing

home therapies i.e. it was having the desired effect. There was some

concern that transplantation rates were not included in the CQUIN,

however there was no desire to modify the CQUIN. Despite the focus

of renal centres, enthusiasm of staff and their expressed confidence,

doubts remain as to the feasibility of achieving 35% of dialysis patients

on home therapies by 2015.

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3. Training facilities and resource constraints

Limited training room facilities and staff to train patients for home

dialysis were important issues, particularly for HHD provision.

Although the need for more PD staff was acknowledged, feedback

suggested that HHD could increase further with an expansion in the

numbers of dedicated staff and training facilities for patients.

4. Patient tracking

All centres are monitoring the percentage of patients on different

therapies and at different stages. However, centres differed markedly

in their satisfaction with their current system and the degree to which it

is linked with Renal Registry and Specialist Commissioner returns.

5. Technical issues

Generally technical issues were viewed as less problematic than

education and attitudes as existing technology can be used to meet the

CQUIN target. However differing views were expressed on the use of

„portable‟ machines such as NxStage. Also, lack of confidence in self

cannulation was seen as an important barrier to home haemodialysis

as was lack of space in some homes.

Continuing challenges and further opportunities for improving the uptake of

home therapies can be seen as organisational, human behaviour and

technology issues. Education, training, availability of support and a sound

therapeutic alliance are all important and integral to effective clinical care.

Patient confidence in every aspect of the delivery system may be the most

important single factor. A macro-level perspective of the dynamic inter-

relationships of factors influencing the uptake of home therapies is presented

using an adapted version of Porter‟s Five Forces Model (1980).

Conclusions and recommendations for further work

We regard the Renal Centre staff interviewed as powerful advocates of the

advantages of home therapies. Staff consulted expressed confidence and

enthusiasm to reach the CQUIN target, but some were concerned about

resource constraints, the importance of timely and tailored patient education,

and retaining patient choice. Centres were implementing a range of

initiatives, including better patient tracking, more timely patient education,

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greater use of patient champions, and assisted and minimal care

programmes.

Technology and home environment were not perceived as major barriers.

However, gaining permission for necessary adaptations in the home appears

to present an obstacle for patients living in rented accommodation or

communal settings.

Clinician behaviour was not identified as a significant factor, although there

were some indications that underlying culture may be an issue; some ideas

have been suggested to help address this alongside ideas to support sharing

of good practice. Analysis of Renal Centres‟ workforce skills mix could

explore processes to optimise patient care.

The availability of resources to develop home therapies which are

personalised, sustainable and highly reliable is a substantial concern to Renal

Centre staff.

We recommend that patient and carer views are sought and models of patient

involvement are considered to develop effective patient education. There is

also a need for further work on: the psychological impact of shifting care into

patient homes; education for staff, patients and carers; the health, social and

economic aspects of investing in home therapies; and, optimal ways to embed

best practice.

This consultation has been used to inform the development of Demonstrator

Site projects at volunteer Renal Centres across the West Midlands. These

projects will test out some of the ideas identified by Renal Centre staff as

possible good practice innovations to increase the uptake of home therapies.

Finally, it is worth emphasising that this consultation strongly suggests that if

they are provided with the necessary resources and support, the most

powerful resource of all is already in place in Renal Centres: a committed,

determined and expert staff with the vision and capability to achieve their

goals.

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Section 2. Introduction

This report presents an analytic commentary arising from consultation by a

team from the West Midlands Central Health Innovation Education Cluster

(WMC-HIEC) with West Midlands Renal Centre Staff between May and

September 2011.

The WMC-HIEC is hosted by the University of Birmingham and includes a

range of stakeholders from across Birmingham and the Black Country. The

WMC-HIEC aims to facilitate high quality patient services by quickly bringing

the benefits of research and innovation directly to patients and by

strengthening the co-ordination of education and training so that it supports a

fit for purpose workforce equipped to deliver excellence.

The consultation which is reported here is part of a programme of

collaborative work developing between WMC-HIEC and Renal Centres

serving adult populations across the West Midlands. With the support of

expertise from the HIEC team small projects at Demonstrator sites will be

undertaken to test out ideas and share learning to increase the uptake of

home therapies.

The consultation in this report was used to inform and ground these emergent

projects. It was also used to assist the West Midlands Specialised

Commissioning Team for Renal Services and the West Midlands Renal

Network who are jointly undertaking a project to increase the uptake of home

therapies to 35% by 2015. The WMC HIEC-CKD team undertook a limited

consultation with Renal Centre staff to inform the design of the new

commissioning specification. The WMC HIEC-CKD researchers were also

asked to undertake Patient Flow Analysis (PFA) to facilitate future quality

assurance and enhancement. Ideas for building collaboration and sharing of

good practice among Renal Centres were also explored.

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2.1 Objectives of Liaison with the Specialist Commissioning

Team

The overall purpose of this WMC-HIEC CKD work was to liaise with NHS staff

in the Renal Centres for adult patients in the West Midlands to explore ways

of increasing the uptake of home dialysis for patients with chronic kidney

disease. The preliminary consultation focused only on exploring NHS staff

views, not patients‟ views.

The consultation specifically aimed:

1) To explore NHS staff views about the uptake of home dialysis services

by patients with CKD in each participating Renal Centre

2) To explore NHS staff views towards the CQUIN target to increase the

uptake of home dialysis and identify how each participating Renal

Centre is working towards this goal

3) To investigate the haemodialysis equipment, explore the technical

capacity and limitations of each Renal Centre and any technology

impact in terms of increasing the uptake of home dialysis

4) To identify and better understand the flow of CKD patients taking up

dialysis at each Renal Centre

5) To understand the provision of education and support to staff, patients

and carers

6) To enquire about the numbers of CKD patients and the proportion

taking up home dialysis at each Renal Centre.

Renal Services for children were excluded from the brief.

Following scoping discussions with the Specialised Commissioning Team, the

independent WMC-HIEC team consulted staff about the uptake of home

therapies. This consultation was in two phases i) initial visits to Renal Centres,

meeting a cross section of staff selected by the Centres ii) a series of follow-

up interviews with staff explicitly involved in increasing the uptake of home

haemodialysis. Existing research literature was reviewed to give a baseline

for comparison and to help shape the focus of the consultation. A WMC-

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HIEC research fellow also examined patient flow through the clinical pathway.

Knowledge from other WMC-HIEC work streams has also contributed.

This report presents initial analysis and a first synthesis of this exploratory

work. Tentative suggestions are made about good practice innovations and

possible solutions that may help increase the uptake of home therapies. The

report explores some of the challenges and opportunities arising from the re-

design of the West Midlands commissioning specification and from a

Commissioning for Quality and Innovation payment (CQUIN) incentivising the

Renal Centres to increase their delivery of home therapies to35% within five

years.

As a foundation, the next Section presents an overview of current knowledge

about the context and some of the identified barriers to home therapies.

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Section 3. Context and literature review

3.1 Summary overview

There is evidence to suggest that home haemodialysis is clinically effective,

results in higher quality of life and longer survival time than Centre-based

haemodialysis (Mowatt et al, 2003; Ageborg, Allenius and Cederfjäll, 2005;

Saner et al, 2005; Kjellstrant et al, 2008). Home delivery of dialysis, through

home haemodialysis or peritoneal dialysis, has been shown to be cheaper

and more cost-effective than either hospital-based haemodialysis or satellite-

unit based haemodialysis (Baboolal et al, 2008; NICE, 2002; Winkelmayer,

2002; Mowatt et al, 2003; McFarlane et al, 2006; Agar et al, 2005a,b;

Ananthapavan et al 2010). The ability to dialyse nocturnally and for longer

hours enabled by home delivery of dialysis may be key to improvements in

patient wellbeing, and allows greater freedom for patients to maintain

employment and a better lifestyle (Bolgg and Hyde, 2006; Mowatt et al, 2003;

Kutner et al, 2005). Patients value greatly the ability to maintain a sense of

control over their health and treatment (Polaschek, 2007; Giles, 2005).

However, spouses and relatives, acting as carers, may experience additional

stress as a result of the increased demands on them to assist in dialysis at

home (Polaschek, 2007; NICE, 2002).

However, there are criticisms of the existing evidence and despite the

acknowledged advantages of home delivery of dialysis, wide variations

persist in the availability of home haemodialysis internationally (MacGregor,

Agar and Blagg, 2006). Known barriers to home dialysis include:

reimbursement issues in the USA; lack of training programmes for

healthcare practitioners; physician and patient conservatism; lack of social

support; perceived inability to perform self-care dialysis; and medical

contraindications (Kjellstrand et al, 2008; Blagg, 2005, 2008; Zhang et al,

2010; Jager et al, 2004; McLaughlin et al, 2003). In many cases patients

are not presented with home dialysis options or do not receive sufficient

patient education about different treatment modalities (Mehrotra et al,

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2005). Increased numbers of patients choose home dialysis following

patient-centred educational interventions (Manns et al, 2005; McLaughlin et

al, 2008; Agraharkar et al, 2003). The importance of improved education

for healthcare professionals has also been recognised (Piccoli et al 2003,

2004, Blagg 2005).

Some of these factors are discussed in more detail below.

3.2 Policy drivers

Provision of peritoneal dialysis and home haemodialysis in the UK occur

within a policy context in which patient choice and care closer to home are

consistently promoted. NHS policy emphasises the importance of patient-

centred care and patient choice (Department of Health 2006, 2007, 2009a,

2009b, 2009c, 2010), whilst also promoting the provision of care close to or at

home (Department of Health 2007, 2009a). At the same time self care is

considered important, not merely to enhance the philosophy of self

responsibility but also for conservation of resources (DoH 2001, NHS Kidney

Care 2009, CEP2010). For patients with kidney failure, the national service

framework and policy and service guidelines promote informed patient

choices about the preferred place, time and type of treatment ( NICE 2002,

DoH 2004, 2009c, NHS Kidney Care 2010a,b).

The Department of Health (2009c) recommends that home haemodialysis

should routinely be offered as part of a full menu of renal replacement therapy

options, including transplantation, peritoneal dialysis and conservative

management. NHS Kidney Care (2010a) suggests that home haemodialysis

(HHD) offers improved quality of life and the opportunity to undertake more

frequent or longer dialysis sessions, associated with improved survival,

reduced blood pressure, medication, symptom burden, hospitalisations plus

freedom from dietary and fluid restrictions. Despite these benefits, only 2% of

the prevalent dialysis population undertook HHD in 2000/2001 (NICE 2002).

The NICE guidance (2002) stated that HHD was cheaper than hospital HD

and should be offered to all suitable patients.

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NHS Kidney Care produced a toolkit for establishing a successful home

haemodialysis programme (NHS Kidney Care, 2010). It stresses the

importance of training and support for patients and carers, and also of patient

choice, recommending:

Ensure consideration is given for all patients to choose their preferred place of treatment as part of initial and ongoing discussions. Open patient choice should be a key step as part of shared decision-making. If a patient chooses home therapies, focus on how to make that work, rather than on obstacles (NHS Kidney Care, 2010: 7).

3.3 Clinical management of renal failure

Throughout the entire disease course CKD requires consistent but flexible

management including regular monitoring, a variety of medical and surgical

interventions, lifestyle and behaviour change, education and support. At

different points in their disease progression, patients may require different

combinations and degree of medical interventions. Lifestyle and behavioural

management plus medication may maintain kidney function until the end of

life for some patients while others patients may proceed to transplant, dialysis,

palliative and end of life care. Renal Centre staff tend to develop long term

relationships with patients and their families. Like all long term conditions,

CKD conveys a substantial impact on individual health and wellbeing and a

significant social and economic cost for the patient and family and for their

health and social care services (NHS Kidney Care 2010c)

When the loss of kidney function reaches the point where the kidneys may fail

to support life then renal replacement therapy (RRT) is required (Mowatt et al,

2002). If renal transplantation is not an option, or while waiting to receive a

donor kidney, patients may be treated with either peritoneal dialysis or

haemodialysis (Ananthapavan, Lowin and Bloomfield, 2010). Peritoneal

dialysis is a home-based treatment, with modalities including continuous

ambulatory peritoneal dialysis (CAPD), automated peritoneal dialysis (APD)

which is usually performed overnight, and assisted peritoneal dialysis, where

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a paid carer assists with treatment (NHS Kidney Care 2009; Department of

Health, 2004a). Haemodialysis can be carried out in a hospital setting, a

satellite unit, or within a patient‟s home (Ananthapavan, Lowin and Bloomfield,

2010, Mowett et al 2002, NICE 2002). Centre-based haemodialysis normally

comprises a four-hour treatment three times per week, whilst home

haemodialysis more easily permits flexible dialysis e.g. short daily, alternate

day or overnight treatments (Department of Health, 2004a; Agar et al, 2005a).

In 2007, RRT was provided for 45,484 adult patients by 72 Renal Centres

within the UK, with 46 of these Centres operating satellite dialysis units and

46 running home haemodialysis programmes (Ansell et al 2008).

According to NHS Kidney Care (2010c) there were 39,476 adult patients

receiving RRT in England at the end of 2008. According to Jones (2009) the

UK Renal Registry estimates that average year-on year growth is around 5%.

The research evidence about clinical and cost effectiveness of these

modalities is discussed further in Section 3.6 below.

3.4 Risk Factors

A number of socio-demographic variables have been identified in prevalence

rates. Jones (2009:6) says:

Within this overall rate [of increase] there is marked variation among individual units which reflect differences in local populations. Those areas with large ethnic minority groups are likely to see even greater increases. The use of RRT is three times higher among ethnic minorities than in the white population (Trehan, 2003); and the situation will be compounded as the comparatively young ethnic minority population ages.

Hypertension, diabetes, obesity, smoking and socio-economic status are all

risk factors for kidney disease. In particular, CKD tends to progress more

rapidly in socially deprived patients. The effects on both incidence and

progression are mediated by the multiple physiological, social and

psychological factors influencing individual health and wellbeing through the

life course, for example; low birth weight; smoking; obesity; diabetes;

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hypertension; poor compliance with treatment; variation in quality of primary

care services and poorer access to secondary care are also implicated ( NHS

Kidney Care 2010c)

In the UK, increasingly, an older client group with co-morbidity is the norm.

In 2004, 10% of service users were managing four or more long term

conditions (DoH 2004). This suggests a group of patients with complex

clinical presentation and increasing risk of frailty. In the western world,

diabetes is one of the highest single causes of kidney disease (USRDS 2010;

International Diabetes Federation 2004, UK Renal Registry 2005).

3.5 Complications

CKD increases the risk of hospitalisation, morbidity and mortality.

Though many patients adjust successfully, CKD is also associated with poorer

psychosocial functioning, higher anxiety, higher distress, decreased sense of

well-being, higher depression rates and negative health perception. In

England the mortality rate where the underlying cause of death is chronic

renal failure has remained relatively static at about 1.3 to 1.8 per 100,000

people. In England this equated to 10,030 years of life lost prematurely in

under 75 year olds in the combined years 2006/08. (NHS Kidney Care

2010c).

3.5.1 Clinical Effectiveness and Quality of Life

CKD has a negative impact on overall quality of life. An economic evaluation

that estimated quality of life scores for people on dialysis found that quality of

life scores were consistently lower than age-related population norm. The

study also found that dialysis places a major limitation on a patient„s social

life. About 80% of the sample on dialysis felt that their life was affected, with

60% reporting a burden on their carers (Roderick 2005, NHS Kidney Care

2010c).

Diagnosis with CKD starts a long process of progressive physical and

psychological decline that could potentially expose the individual to the impact

of any fragmentation of care and services or changes in their health and

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wellbeing. Transfer into RRT is a further disruptive and stressful transition

even if preparation is excellent (Corben & Rosen 2005).

3.6 Options for Renal Replacement Therapy

The clinical effectiveness of different dialysis modalities is a key

consideration. Selected studies are summarised below.

Mowatt et al (2003) conducted a systematic review to assess the

effectiveness of home haemodialysis compared with haemodialysis carried

out in a hospital or satellite unit, for people with end stage renal failure, except

those for whom peritoneal dialysis is currently adequate. Twenty-seven

published studies met the inclusion criteria and, whilst there were major

concerns about patient selection effects (with home haemodialysis generally

used on a highly selected group of relatively young patients with low

comorbidity), the general direction of evidence from the included studies

suggested that home haemodialysis was more effective than in-Centre

dialysis, and also modestly more effective than satellite unit dialysis (Mowatt

et al, 2003). The evidence suggested that people being dialysed at home

tended to experience a better quality of life, in terms of functional ability and

well-being (Mowatt et al, 2003). The authors stress that, in some studies, the

primary comparison was of different duration and frequencies of

haemodialysis, with the home setting enabling longer (including overnight)

and more frequent dialysis to take place, enabling patients to feel better.

Ageborg, Allenius and Cederfjäll (2005) investigated quality of life in patients

who: dialyse themselves at home; dialyse themselves in a Centre; or are

dialysed by nurses in a Centre. They report a trend for the home

haemodialysis patients to score higher for quality of life and self-care ability

than self-care haemodialysis patients who, in turn, score higher than the

hospital dialysis group. However, the small sample size and baseline

differences between the groups are major limitations of this study.

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One of the challenging clinical problems with daily haemodialysis is the risk of

vascular access failure, caused by frequent needle punctures. In Italy, Piccoli

et al (2004) investigated the incidence and type of vascular access

complications during daily haemodialysis and other schedules, both at home

and on limited care haemodialysis. Drawing on data from 77 patients (42

treated at home and 35 in a limited care Centre), daily haemodialysis did not

emerge as a significant risk factor for vascular access morbidity or for

vascular access failure. As in other studies, patients on home dialysis were

younger and had less comorbidity than patients treated in the limited care

unit.

A matched case cohort study of Swedish patients treated with home

haemodialysis between 1970 and 1995 is reported by Saner et al (2005).

The two groups were comparable in terms of the main comorbidities related to

survival, although the home haemodialysis group were more likely to be

married and, whilst this is unsurprising given the support requirements often

needed for home haemodialysis, it may have affected the results. The study

found that home haemodialysis patients were hospitalised less often and

tended to have fewer operations compared with Centre haemodialysis

patients. Survival time was significantly longer for the home haemodialysis

group.

An international study pooled data from five Centres in the USA, Italy, France

and the UK in order to examine survival statistics for daily haemodialysis in a

cohort of 415 patients (Kjellstrand et al, 2008). Survival was compared with

matched patients from the USRDS 2005 Data Report (matching the patients

by age, diagnosis and place of dialysis). Selection bias is less prominent than

in many other studies, with one third of the daily dialysis patients having

serious complications or serious co-morbidities and a poor prognosis.

Comparisons showed that the survival of the daily haemodialysis patients was

2-3 times higher, and the predicted 50% survival time 2.3-10.9 years longer

than that of the matched US haemodialysis patients. Survival of patients

dialysing at home was similar to that of age-matched recipients of deceased

donor renal transplants. The authors conclude that daily haemodialysis is the

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best dialysis modality for patients willing to undertake this and should be

considered the gold standard of dialysis.

3.7 Cost and Cost-Effectiveness

A number of studies have explored the cost implications and cost-

effectiveness of home delivery of dialysis. In 2002 a systematic review

explored the cost-effectiveness of home versus hospital or satellite unit

haemodialysis for people with end stage renal failure (Mowatt et al, 2002). It

concluded:

Based on a systematic review of economic evaluations pertaining to RRT, the evidence is overwhelmingly in favour of lower total costs (defined as treatment costs plus costs of treatment-associated events) for home haemodialysis than for hospital dialysis... The treatment costs of satellite units were lower than hospital haemodialysis and higher than home haemodialysis (Mowatt et al, 2002: 13).

The study acknowledges that the exact cost advantage is difficult to ascertain,

due to selection of healthier patients for home haemodialysis at this time.

However, it notes that, despite the initial high costs of home haemodialysis

due to set-up and training costs, the payback period for these higher costs

relative to hospital haemodialysis is approximately 14 months, shorter than

the survival of many home-based patients and shorter than the wait for a

transplant among many adult patients approved for transplant. A modelling

exercise to estimate costs, based on data from previously conducted studies,

confirmed that, for low risk adults, home haemodialysis was less costly than

satellite haemodialysis and hospital haemodialysis, mainly due to lower

staffing requirements. The picture was less conclusive for adults of high and

medium risk, with travel costs and allowances to carers of home

haemodialysis patients proving highly influential factors (Mowatt et al, 2002).

Another systematic review (Winkelmayer, 2002) calculated cost-effectiveness

ratios for in-Centre haemodialysis (between $55,000 and $80,000 per life year

gained) and for home haemodialysis (between $33,000 and $50,000 per life

year gained), although they speculate that home haemodialysis costs are

likely to have been underestimated due to the non-inclusion of care-giver

costs. Estimates at this time from the National Institute for Clinical Evidence

(NICE, 2002) also indicated that home haemodialysis cost less to the NHS

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than either haemodialysis in a satellite unit or a hospital. Again carer costs

were excluded from this analysis, raising the possibility that savings to the

NHS are partly enabled by increased costs to the patient‟s family.

More recent studies have added to the evidence base, supporting these early

findings. A study in Australia compared the expenditure of a conventional

satellite haemodialysis unit and a nocturnal home haemodialysis programme

in the same renal service, concluding that nocturnal home haemodialysis was

over 10% cheaper per annum (Agar et al, 2005b). McFarlane et al (2006)

also looked at home nocturnal haemodialysis, comparing its cost-

effectiveness relative to in-Centre haemodialysis over a lifetime of renal

replacement therapy. Their model found that home nocturnal haemodialysis

(HNHD) was the dominant therapy in a long-run analysis, predicting clinically

significant cost savings and utility gains, and they conclude:

HNHD is cost saving while improving quality of life (McFarlane et al, 2006: 798).

A comprehensive cost-effectiveness analysis was conducted recently in the

UK by the Centre for Evidence-based Purchasing (Ananthapavan, Lowin and

Bloomfield, 2010). It concluded that home haemodialysis was the dominant

strategy over both hospital based haemodialysis and satellite unit

haemodialysis, producing cost savings and improvements in health related

quality of life.

Fewer studies have explored the cost implications of a wider range of dialysis

modalities. However, a study to estimate the cost of different dialysis

modalities in the UK concluded that delivery at home (through home

haemodialysis, automated peritoneal dialysis or continuous ambulatory

peritoneal dialysis) was cheaper than either hospital-based haemodialysis or

satellite-unit-based haemodialysis (Baboolal et al 2008).

22

3.8 Patient and Carer Experiences

Equally important are the experiences and preferences of both patients and

carers. Systematic reviews of “hospital at home” schemes outside the field of

dialysis have found that patients and carers preferred hospital at home to

inpatient hospital care (Ram et al, 2003; Shepperd et al, 2008). There is

some indication that preferences are similar for home dialysis, but in recent

years the tradition has been for Centre based dialysis so role models may be

less evident.

There is evidence that patients dialysing at home experience better quality of

life than those receiving haemodialysis in Centre (Ageborg, Allenius and

Cederfjäll, 2005; Mowatt et al, 2003). A survey of patients at the Sydney

Dialysis Centre found that patients who dialyse nocturnally and for longer

hours (enabled by home delivery of dialysis) experience improved sense of

wellbeing, diet control and increased energy levels, and reported benefits

such as increased opportunity for employment, fewer restrictions on free time

and better lifestyle (Bolgg and Hyde, 2006). Mowatt et al‟s (2003) systematic

review concluded that the use of daily slow nocturnal home haemodialysis

benefits patients by enabling work outside the home or, in the case of

children, result in less disruption to their education. Kutner et al‟s (2005)

study of patient reported quality of life amongst peritoneal dialysis (PD) and

Centre-based haemodialysis (HD) patients in the USA concluded:

Patients who initiate PD may be able to enjoy a valued period of time when they are largely independent of the dialysis facility, and they are more likely to be able to continue jobs held prior to dialysis. Patient lifestyle opportunities and the overall cost advantages associated with use of PD, a home-based and self-care therapy, may also apply to home-based HD (Kutner et al, 2005).

Such independence from a dialysis Centre may have a greater impact in rural

areas, where regular travel to the Centre is time consuming. A survey in rural

Scotland in 1999 found that travel requirements for haemodialysis could be

very demanding, with nearly a fifth of Dumfries patients travelling in excess of

100 miles per dialysis day solely for the purpose of dialysis (Brammah et al,

23

2001). The authors advocate greater promotion of home based treatment to

improve the quality of life for patients in rural areas.

Giles (2005) conducted a qualitative study involving in-depth interviews with

three Canadian patients on home haemodialysis. He describes the

paradoxical dilemma experienced by patients of living with a life-saving

machine that they have no control over. On one hand, patients value the

“lifeline” that the machine represents, one patient describing it as “a family

member” and stressing the importance of looking after it:

You learn... to look after it because if it‟s not this then it‟s back to the hospital type thing. And I don‟t want that, like I really don‟t want to go back to the hospital. I‟m much happier this way (Giles, 2005: 26).

On the other hand, patients also talk about their dependency on the machine,

which denies them agency (Giles, 2005). Importantly, increased agency and

a sense of control is one of the important benefits of home dialysis compared

with hospital treatment, as exemplified by Brown (2008) who cited a patient:

On haemodialysis, my life was not my own – handing control to nursing staff for 4 hours, 3 days a week, surrounded by noisy machines and unhappy patients, returning home after 11 hours, too exhausted to eat and falling into bed. However, peritoneal dialysis has given me back my life. I am in control of me and am treated like a human being, not just a patient (Brown, 2008: 444).

Polaschek (2007) interviewed 20 home dialysis patients in New Zealand and

also found that patient agency was a key emergent theme. His findings

suggest that patients do not act as passive recipients in their care, but are

actively engaged in a process of negotiation to adapt and integrate therapy

into their pattern of regular activities to maintain their normal lifestyle. For

example, many participants modified their treatment, by shortening or

lengthening treatment times, altering the timing of treatment sessions,

modifying their daily fluid intake and dietary restrictions, or varying their

regime to accommodate specific work or social events. This agency to adapt

the regime was viewed as a positive aspect of home dialysis, one patient

saying:

Doing dialysis at home is better; when you do the three sessions is up to you (Polaschek, 2007: 54).

24

Another interviewee commented:

In hospital you‟re at every one‟s beck and call; you do it when they want you to do it (Polaschek, 2007: 54).

For many patients, close relationships with partners, family or friends provided

motivation to continue to perform their treatment, and several indicated that

dialysis was difficult when living alone and easier when living with a partner or

relative (Polaschek, 2007). Spouses of haemodialysis patients can

experience strain on their health in their everyday life, as they neglect

themselves and give priority to their partner‟s needs (Ziegert, Fridlund and

Lidell, 2006). Additional strain can be placed on relatives when dialysis is

delivered in the home setting, where they often act as unpaid carers, aiding

the patient before, during and after dialysis (Polaschek, 2007; Mowatt et al,

2003; NICE, 2002). The time commitment required from such carers can be

considerable (Mowatt et al, 2003; NICE, 2002). Mowatt et al (2003) conclude

that, while the expansion of home haemodialysis may improve the well-being

of patients, it may considerably add to the stress on carers and families.

Availability of home dialysis has fluctuated historically: in 1971 58.8% of

patients on dialysis in the UK received dialysis at home, mostly overnight

three times a week, but in 2005 these figures were only 2.7% and 0.6%

(Blagg, 2008). In contrast, provision of home haemodialysis in Australia, New

Zealand, Finland and Sweden has recently expanded (MacGregor, Agar and

Blagg, 2006). Recent figures suggest a reversal in this decline (Brown 2009)

and an emerging enthusiasm for HHD, recognising that it offers a better

quality of treatment, should cost less overall and address issues such as

capacity, dialysis away from base and carbon footprint. Nevertheless, there

continues to be substantial variation in the adoption of home therapies

globally and within the United Kingdom. Despite the many acknowledged

advantages to home therapies, dialysis units still offer a relatively limited

choice of dialysis modalities (Agar et al, 2005a, MacGregor et al 2006, Burke

2011). Some of the barriers are identified in the next section.

25

3. 9 Barriers to Expanding Home Therapy Services

A number of factors appear to be implicated in such variation in the

prevalence of home dialysis. Blagg‟s (2005) review of home haemodialysis

identifies a number of barriers that have impacted home haemodialysis since

its introduction in the 1960s, including: the need for space for the equipment

and to store supplies; the need for modifications of domestic plumbing and

electricity and increased utility bills; the need for help from a family member or

other carer; and the general impact on the family. Many of these early

barriers have been overcome by technology development but Blagg (2005)

cites a number of other reasons for the decline in home haemodialysis in the

USA, including: inadequate payments for this modality for the first five years

of the Medicare ESRD Programme; lack of motivation amongst for-profit

dialysis units to set up home haemodialysis programmes; and lack of

encouragement by nephrologists and staff with little or no experience of home

haemodialysis. Patients were put off by the extra time and effort involved, the

thought of needling themselves, technical aspects, and concerns about being

isolated (Blagg, 2005).

Other commentators have suggested likely barriers to home haemodialysis.

Agar et al (2005a) cite the following limiting factors: convenience; staff and

administrative comfort; inertia and/or lack of interest in additional programme

development; uncertainty regarding the published outcome data from new

modalities; and fear of potential negative budgetary implications. Kjellstrand

et al (2008) focus specifically on barriers to the adoption of daily dialysis,

highlighting reimbursement problems, the virtual disappearance of home

haemodialysis training programmes in the USA and other countries, difficult

logistics, physician and patient reluctance and conservatism. They conclude:

Logistical problems, conservatism by physicians and nurses, worries about expenses by government, businessmen and administrators, the decline in training of physicians and nurses and training units for home haemodialysis, unavailability of haemodialysis machines suitable for the use at home and patient worries have made the introduction of daily haemodialysis slow and difficult (Kjellstrand et al, 2008: 3288).

26

Studies have also been conducted to explore barriers to adoption of home

therapy services in more depth. Zhang et al (2010) conducted an

observational cohort study examining 486 patients with CKD in Toronto,

Canada, from 2001 to 2007. They found that the main barriers to home

dialysis were disinterest by patients and their families (25.4%) and lack of

social support (12.1%). Medical contraindications for home dialysis were

present among 11% of patients, and other stated barriers were inadequate

space (5%), communication barriers (5%) and inability to perform their own

dialysis (3%). Another Canadian study surveyed in-Centre haemodialysis

patients to explore reasons why they did not choose to perform self-care

dialysis (McLaughlin et al, 2003). The study identified prevalent barriers

related to knowledge (lack of a satisfactory explanation of the various

techniques), skills (needle phobia and lack of space at home), and attitudes

(fear of substandard care, fear of change, fear of social isolation, and

unwillingness to remain awake during dialysis).

Jager et al (2004) report a large Dutch prospective multi-Centre study, in

which nephrologists indicated the most important reason for the modality

selection (haemodialysis versus peritoneal dialysis) of 1,347 new patients with

end-stage renal disease (ESRD). In total, 29% of participants had

contraindications to peritoneal dialysis and 7% had contraindications to

haemodialysis. The most frequently mentioned contraindication was social:

the expected incapability of patients to perform peritoneal dialysis exchanges

themselves. Older age increased the odds of choosing haemodialysis,

whereas receipt of pre-dialysis care was associated with higher preference for

peritoneal dialysis. This reinforces findings from an earlier study in the USA,

exploring modality assignment among 4.025 new end-stage renal disease

patients (Stack, 2002). In this study, the selection of peritoneal dialysis over

haemodialysis was significantly associated with younger age, white race,

fewer comorbid conditions and lower serum albumin. Greater use of

peritoneal dialysis was seen in patients who were: employed, married, living

with someone, had higher educational attainment, were referred earlier to a

nephrologist, and seen more frequently by a nephrology in the pre-dialysis

period (Stack, 2002).

27

The effect of pre-dialysis processes on the selection of renal replacement

therapy was explored in a survey-based study conducted in the USA in 2002

(Mehrotra et al, 2005). It found that the majority of pre-dialysis patients were

not presented with chronic peritoneal dialysis, home haemodialysis or renal

transplantation as options (66%, 88% and 74% respectively). Thirty per cent

of patients reported that treatment options were not presented to them until

dialysis was started, and 48% reported that the treatment options were

presented either after the first dialysis or less than one month before the need

for the first dialysis. Variables significantly associated with selection of

chronic peritoneal dialysis were the probability of that modality being

presented as a treatment option, and the time spent on patient education.

The authors conclude:

This study suggests that an important reason for the relatively low utilization of home dialysis therapies in the United States arises from the inability of providers to present chronic peritoneal dialysis or home hemodialysis as alternatives to in-center hemodialysis or to spend enough time in explaining the treatment options to incident ESRC patients (Mehrotra et al, 2005: 389).

3.9.1 Education and Training

Education for patients, carers and healthcare professionals are important

considerations when appraising barriers to home therapies. Beavan (2011)

identified some common themes which appear to influence patient decision

making. These include demographic factors, pre-dialysis education, the

impact of sources of information, lifestyle and general health issues.

a) Demographic factors

Relevant factors were age, gender, ethnicity, marital status and living

arrangements, although the correlation with treatment choices was not

entirely consistent. Chanouzas et al (2009) found that younger age and the

presence of other people in the household were associated with greater

uptake of peritoneal dialysis (PD), while Little et al (2001) suggested that

predictors for choosing PD were increasing age, being male and being

married. Stack (2002) concluded from a national study of the records of 4025

28

patients that patients who were younger, white, married or living with

someone when end-stage renal disease (ESRD) was first diagnosed were

more likely to have PD. A Canadian study (Zhang et al, 2010) found that

patients on home haemodialysis (HHD) tended to be younger than those on

in-Centre haemodialysis (HD) and PD and that single males were more likely

to receive in-Centre treatment.

b) Pre-dialysis education

Education about dialysis seemed to have a consistent impact on choice,

depending on if and when it was provided and how it was delivered. The

National Service Framework for Renal Services (Department of Health,

2004a) suggests that education programmes are more effective when they

are tailored to individual needs, both culturally and linguistically, and take

account of other influences such as age and disability. The importance of

individualised, culturally sensitive education has also been highlighted by

providers of home dialysis services in remote rural areas of Australia (Villarba

and Warr, 2004).

Manns et al (2005) describe a randomised controlled trial in Canada to

determine the impact of patient-Centred educational intervention on patients‟

intention to initiate self-care dialysis (including home and self-care

haemodialysis and peritoneal dialysis). The educational intervention,

comprising booklets, a 15 minute video, and 90 minute small group

educational session, was found to significantly increase intention to start

dialysis with self-care dialysis. A retrospective study in Belgium (Goovaerts,

Jadoul and Goffin, 2005) found that a high percentage (55%) of patients

exposed to a structured pre-dialysis education programme (consisting of an

individualised information session with an experienced nurse and in-house

audio-visual tapes) opted for a self-care dialysis modality (peritoneal dialysis

or home haemodialysis). The importance of early referral and initiating the

information regarding dialysis while the patient still feels well was stressed by

the authors. However, the study is limited by its lack of a comparator group.

McLaughlin et al (2008) randomised patients to standard pre-dialysis

education or a multifaceted educational intervention to explore perceptions of

29

self-care dialysis (peritoneal dialysis, home haemodialysis and self-care

haemodialysis) in Canada. They found that the educational intervention

increased patient‟s perceptions of the advantages of self-care dialysis and

that these perceptions, in turn, were associated with choosing self-care

dialysis. They recommend that future educational interventions stress the

advantages of self-care dialysis most likely to be associated with choosing

this modality: increased freedom and lifestyle preservation. In the USA,

introduction of additional education by nephrologists, the home dialysis

coordinator and a meeting with current home dialysis patients led to growth of

117% in a home dialysis programme (Agraharkar et al, 2003). Blagg (2005)

suggested that new educational programmes for patients need to be

developed, to include information on the advantages of home dialysis, and

that centralisation of home haemodialysis training and support would

conserve resources and ensure the engagement of highly trained and

experienced staff.

A systematic review of 18 papers (Morton et al, 2010) suggested that timing

of information about treatment options (as well as the synchronous creation of

vascular access) was a factor in the use of haemodialysis and restriction of

choice. Patients interviewed by Johansson et al (2009) felt that information

was sometimes biased, non-existent, presented at an inappropriate time or in

an inaccessible format. Attendance at pre-dialysis education days and written

information was associated with greater uptake of PD (Chanouzas et al,

2009), a finding supported by Little et al (2001) who highlighted pre-dialysis

counselling as an independent predictor for choosing continuous ambulatory

peritoneal dialysis (CAPD). Prichard (1996) analysed 150 patient records and

concluded that well-informed patients who had a realistic choice were more

likely to opt for self-care whether this was for PD or HD. Marron et al (2004)

reported that more patients chose PD when they had received education

about dialysis modality options. Wuerth et al (2002) found that 18 of 22

patients who had pre-dialysis education chose PD rather than HD.

Baillod (1995) summarised key elements of patient education for home

dialysis, recognising the importance for patients to grasp key concepts about

their treatment (for example, that dialysis is a replacement treatment, not a

30

cure), as well as practical skills. Whilst dated, this paper usefully highlights

that patients vary in their ability to assimilate this information, in particular

noting the importance of first improving the patient‟s general health, as: “sick

patients learn very little” (Baillod, 1995: 22). Coupe (1998) suggested the

following topics for inclusion in formal pre-dialysis patient education: normal

kidney function; what happens when kidneys do not work; medication and

symptom control; principles of haemodialysis; transplantation; diet and renal

failure; social services; living with renal failure and RRT; support groups;

meeting with other patients; and a visit to dialysis and transplant units. This

would best be run over a number of days or weeks, and be supported by clear

written literature and information in other media, such as video- or audio-tapes

(Coupe, 1998).

c) Source of information

A number of papers suggest that the source of information received by

patients tended to influence their decisions. Hughes (2009) reported that the

majority of patients were positive about peer support and said it helped them

reach decisions about treatment. Winterbottom et al (2011) confirm the

influence of other patients, finding that participants in their questionnaire study

who had been asked to watch video clips were more likely to choose the

modality that appeared to have been presented by a patient than that

explained by a doctor. However, not all patients privilege the views of fellow-

patients: Johansson et al (2009) found that some patients deferred to the

doctor‟s views. Wuerth et al (2002) reported that 83% of patients they

interviewed said their physician was an important influence in choosing, but

PD patients relied more than HD patients on written information and

significant others in making decisions.

d) General health issues

Not surprisingly, health issues were a factor in helping patients decide on

which treatment to have. Lower presence of co-morbidity was associated with

an increased acceptance of PD (Chanouzas et al, 2009), while the likelihood

of survival was the most important factor in how patients chose their dialysis

type in a study which asked patients and family caregivers to rank a range of

factors by importance (Morton et al, 2011). Groome et al (1991) conducted

31

interviews with dialysis patients, nurses and physicians and it was revealed

that in all groups, the possibility of peritonitis was seen as the most important

factor in determining treatment choice. Tebbit et al (2009) looked at the

decision-making process in young people and found that those who rejected

CAPD had concerns about infection and body image.

e) Lifestyle

One of the major factors instrumental in choosing renal replacement treatment

was lifestyle. A systematic review of 40 papers found that the preservation of

well-being, normality and quality of life were significant aspects, as was the

need for control (Murray et al 2008). The ability to cope with treatment,

family, home and work circumstances and commitments were found to be

important for people choosing PD by Chanouzas et al (2009). Groome et al

(1991) identified lifestyle considerations as more significant than any potential

medical consequences other than peritonitis. Independence was highly

scored by service users and the ability to work and travel were seen as

priorities by health care professionals. Lee et al (2008) conducted focus

groups with 24 service users of dialysis and it emerged that flexibility,

independence and feelings of security were all considerations when choosing

treatment modality while leading a normal life was a major goal. Morton et al

(2011) found that the convenience of home dialysis and dialysis-free days

were rated highly by patients themselves while convenience of home dialysis,

respite and the ability to travel were important to family caregivers. Wuerth et

al (2002) had similar findings with PD patients, who cited flexibility,

convenience of home therapy and the option of dialysing when asleep as the

benefits they looked for. Conversely, HD patients reported that having a

planned schedule and having health professionals‟ care for them was most

important. Tebbit et al (2009) reported that concerns about frequency of

treatment and ability to self-care often discouraged young people from

choosing CAPD. Zhang et al (2010) found that patient and family disinterest

in home dialysis and lack of support (whether perceived or actual) created a

barrier to home therapy.

There is a need to be cautious in drawing conclusions from research about

patient factors in decision making. The methodologies used vary widely, the

32

ways in which renal health care is organised is very different in the various

countries represented and some studies are quite small. However, it is

evident that pre-dialysis education is significant in helping patients decide on

their treatment modality and many of the studies make recommendations

based on this. Even when factors linked with general health issues are

considered, such as the fear of infection or body image issues, pre-dialysis

education is perceived as the key to addressing these concerns. Further

research into the timing, content, mode and effectiveness of such training

would be useful in helping to identify exactly how pre-dialysis education can

best be delivered to enhance patient confidence in home renal therapies.

f) Education for Staff

The importance of education for healthcare professionals has also been

recognised. Piccoli et al (2003) state that, in medical schools, the teaching of

nephrology is dedicated mainly to primary renal diseases and that renal

replacement therapy (RRT) is often neglected. They claim that, in several

European medical schools, a doctor may graduate without having entered a

dialysis unit or without having seen a haemodialysis machine or a peritoneal

dialysis device. Results from evaluation of a pilot educational intervention

indicate that medical school students are interested in and able to attain a

good level of knowledge about RRT and dialysis choice (Piccoli et al 2003).

Blagg (2005) suggests that educational needs are evident amongst

nephrologists, claiming:

In the USA, as in many other countries, few practising nephrologists today have had any experience with home haemodialysis (Blagg, 2005: 210).

He suggests that nephrologists need to learn more about home

haemodialysis, need to be able to assess patient suitability for home

haemodialysis and understand the options in dialysis equipment so that they

can explain the possibilities to patients and guide their choice (Blagg, 2005)

Kitchen (2011) conducted a mapping exercise of education for health and

social care professionals in the West Midlands and also observed that there

are wide variations in curriculum content and teaching methods about long

33

term conditions, CKD and renal replacement therapies. These variations

occur both between different education providers and between different

professional disciplines. Kitchen suggests that there are opportunities for a

more integrated approach between undergraduate and postgraduate

education and in the design of specialist versus generalist curricula.

3.10 Conclusion

This section has explored published research literature and NHS policy in

relation to the provision of peritoneal dialysis and home haemodialysis. Whilst

not comprehensive in scope, it has covered key aspects in relation to: policy

drivers; clinical effectiveness and quality of life; cost and cost-effectiveness;

patient and carer experiences; barriers to expanding home therapy services;

education and training.

The next section describes how the consultation with Renal Centre staff was

approached.

34

Section 4. Method

The WMC-HIEC agreed to work with the West Midlands Specialised

Commissioning Team to explore ways of increasing the uptake of home

dialysis. Through research, knowledge exchange and focusing on the themes

of professional education, service improvement and technical innovation, the

WMC-HIEC aims to facilitate improvements in the uptake of home dialysis for

patients with chronic kidney disease.

Given the suggested timescales, feasibility was an issue of concern so prior to

undertaking work there were several discussions within the HIEC team and

with Specialist Commissioners to determine the scope of this work. Objectives

were agreed by the end of February 2011.

Initial discussion with Renal Centre colleagues, members of the WMRN and

the SCT suggested that Renal Centre colleagues would welcome the

opportunity to meet with the WMC-HIEC-CKD team. The WMC-HIEC CKD

team agreed this was important. The overall purpose of these visits was to

meet with key clinical staff relating to the provision of home therapies,

introduce the background and objectives of the WMC-HIEC work and to

identify pertinent issues relating to increasing the proportion of patients

receiving home therapies. Typically these visits took the form of 1 to 2 hour

group meetings between the WMC HIEC-CKD team and a group of Centre-

selected staff in each Renal Unit. Information gathered from these visits was

recorded from the discussion using the proforma in Appendix 1.

4.1 The specific objectives of the Renal Centre visits were:

To establish contact and identify the most relevant personnel for further

follow-up enquiry, in order to minimise intrusion by the WMC-HIEC

team

To define the scope of the consultation

To explore the overall capacity of the unit by type of therapy and

caseload;

35

To explore staff perceptions of the unit strengths and weaknesses

To identify aspirations in terms of improving the uptake of home

therapies by enquiring „If you could do one thing to improve the uptake

of home therapies, what would it be?

To better understand the flow of patients through the clinical pathway

To gain permission for further follow-up contact to enable more detailed

consultation

To begin to identify possible areas for small collaborative project/ pilot

work that the WMC-HIEC Service Improvement work stream might

subsequently be able to facilitate with the Renal Centres. These are

intended to test out some of the local ideas for increasing the uptake of

home dialysis.

4.2 Initial visits

Members of the SCT and WMRN offered to broker and attend these initial

meetings. Difficulties with harmonising schedules resulted in these visits not

being competed until the end of June 2011. Consequently the initial visits,

intended to establish access and collaboration, became a key opportunity for

information gathering.

Although there is never any intention for qualitative inquiry to be generalised,

the WMC HIEC-CKD team were concerned about the potential of this informal

style of group conversation being used to inform commissioning decisions.

Therefore, it was agreed that this initial visit meeting data would be

supplemented by follow-up interviews with selected NHS staff during August

and September 2011.

4.3 Follow-up Interviews

Building on knowledge gained from the initial meetings, the follow-up

interviews were devised to consult in greater depth with Lead Physicians,

Lead Nurses and Renal Technologists involved in home therapies in the West

Midlands. Using a case study approach, the follow-up plan was submitted for

36

ethical scrutiny within five working days of the initial visits being completed.

Confirmation of exemption from NRES ethical scrutiny was obtained and the

follow-up evaluation was approved by the University of Birmingham Ethics

Committee on 8th August 2011. A key aspect of the ethics application was

the design of consent procedures. An information sheet for participants is

contained in Appendix 2.

The follow-up interviews were conducted in three concurrent phases:

Phase 1: Views about increasing the uptake of home dialysis

This phase elicited qualitative data conducted through telephone interviews

with nurses having responsibility for home dialysis in each Renal Centre. A

semi-structured interview, of approximately 20 to 30 minutes, explored nurses‟

views and experiences about enabling and increasing uptake of home

dialysis. Interviews were recorded and contemporaneous notes made by the

researcher in the interview. The interview schedule is included in Appendix 3.

Phase 2: Availability of haemodialysis equipment and technical issues

Again, a series of short semi-structured telephone or face-to-face interviews

were conducted with renal technicians at Renal Centres (or with another

member of the NHS dialysis team with close familiarity with the technical

issues). These interviews explored the availability of different dialysis

machines and identified the factors underpinning this choice of provision. A

key focus was to explore whether any simple technical adaptations could help

improve the uptake of home dialysis. See Appendix 4 for this interview

schedule.

Phase 3: Understanding the flow of CKD/home therapy patients

To address this work stream, information was gathered from a number of

sources:

Draft patient flow diagram from the West Midlands Specialist

Commissioners

37

Data from a Renal Centre, collected with a proprietary Excel

spreadsheet and discussion with a senior nurse regarding their use of

this data

Exemplar data showing how another Centre collects data using their

own Excel spreadsheet along with their patient flow diagram

For Phase 3, telephone interviews were conducted with five leads and one

senior nurse in five different Renal Centres. Interviews lasted approximately

20 to 30 minutes and focused on exploring views about patient flow through

the CKD pathway. Interviews were again recorded and contemporaneous

notes made by the researcher were used for accuracy checking. Appendix 5

contains this interview schedule.

The data collection and analysis for Phases 1 to 3 were completed by 19th

September 2011. The initial visits and follow-up interviews were

supplemented by information gathered at the CKD Stakeholder Seminar on

6th September 2011. This seminar was organised by the WMC HIEC CKD to

trial a different way of drawing together an inter-disciplinary audience to

stimulate knowledge exchange and sharing ideas; this addressed one of the

identified objectives of this consultation.

In the next Section an introduction of the West Midlands Renal Services for

adults will lead to a summary of the key findings from the initial visits, in order

to set the context for the remaining Sections: an analytic commentary

(Section 6) followed by a concluding discussion and suggestions for further

work in Section 7.

38

Section 5. Results

This section presents an overview of the Renal Centres serving adult

populations in the West Midlands. It includes a summary and synthesis of the

findings from the initial consultation visits and follow-up interviews. In addition,

some of the outcomes from the WMC-HIEC-CKD Stakeholder Seminar on 6th

September 2011 are also incorporated.

In the West Midlands, the uptake of home therapies is low, at around 5% of all

patients needing dialysis. One patient in the region is undertaking nocturnal

dialysis. It was this context which led to the West Midlands Specialised

Services Commissioning Team agreeing a CQUIN to incentivise home

therapies and convening a project team, including members of the West

Midlands Renal Network, to revise the commissioning specification. The

CQUIN target expects Centres to increase their delivery of home therapies to

35% within five years. 10% of the target can be achieved by increased uptake

of home haemodialysis (HHD) while 25% can be through increased uptake of

continuous ambulatory peritoneal dialysis (CAPD), automated peritoneal

dialysis (APD) or assisted APD (aAPD). Both these groups can include

patients who are able to undertake their dialysis completely independent of

nursing support, whether this is Centre or home based (WMSCT CQUIN

2011).

5.1 Findings from the initial visits

Each of the six Renal Centres visited had a distinctive culture and mix of

caseload. Nevertheless, the age range and prevalence of co-morbidities

among patients was broadly in line with those identified in Section 3.

According to the Centres‟ own assessment:

39

An increased number of older adults are taking up dialysis for the first

time

Many patients have at least one co-morbidity, ranging from separate

conditions such as osteo- and rheumatoid arthritis to one or more of

the long term conditions associated with CKD, identified in Section 3.

Diabetes and cardiovascular disease were most common, with

neurological conditions such as cerebro-vascular disease and

Parkinson‟s Disease also reported

Table 5.1 illustrates the percentage range of treatment modality per dialysis

capacity for six participating Renal Centres. These figures were obtained from

the Renal Centres at the initial visits and are approximate at May /June 2011.

Table 5.1

RRT modality: Range as percentage of total capacity among 6 Renal Centres (approximate, May-June 2011)

Modality HD: Centre based self care

HHD CAPD APD

Range: % of total capacity

0- 2.5% 1%-4.5% 2.5% -17.6% 0.7%-1.5%

Each Centre appeared to have a strategy which aims to deliver best clinical

practice though this varied between Centres. Some were primarily focused

towards increasing their transplant programmes, others towards PD or APD.

All were seeking ways to achieve the CQUIN target and to develop HHD and

our impression from these visits was that staff were clearly experienced,

dedicated and committed to increasing home therapies. Some Centres had

established new posts specifically for this purpose.

Most Centres described their CKD and RRT programmes as „nurse led‟,

particularly the pre-dialysis education programmes. Although this was not

explicitly explored, an impression was gained that the balance of authority and

decision making power between physicians and nurses varied in each Centre:

also that there may be opportunities for closer integration between staff

40

explicitly responsible for home therapies and others who may be less

involved.

5.1.1 Aspects of Quality

Each Centre could identify aspects of their service of which they were

especially proud. For some it was their successful transplant programme;

others identified the comprehensiveness of their patient education; low

infection rates were mentioned; others mentioned the quality of staff support

to patients and their collaborative relationships with patients. It was evident

that quality, safety and patient experience are highly active priorities for all

Renal Centres and much effort was being invested in developing these

aspects of service.

5.1.2 Challenges and Barriers identified at the initial visits

Barriers to the uptake of home therapies were aligned to those identified in

the literature review in Section 3: clinician and patient communication; lack of

social support for some patients; resource and budgetary concerns; difficult

logistics ; lack of role models; clinician and patient resistance or reluctance;

need for consistent early pre-dialysis preparation; lack of training space;

patient concerns about intrusion into the home environment or psychological

space of ‟home‟; perceived impact on patients and family relationships. Some

of these barriers in patients and clinicians were felt by staff to reflect tradition

or fear of change, as they persisted even if the evidence was presented.

Some staff were unsure about the exact terms of the CQUIN and a number

expressed a view that the revised commissioning specification was in danger

of becoming a set of clinical guidelines. Some staff wished the

commissioning specification to include quality indicators that could assist in

constructing business cases for their Trusts.

Local concerns were identified during the initial visits. These varied

considerably but some consistent themes emerged:

41

Concerns included:

The commissioning specification and CQUIN

The current „political‟ and economic climate; relationships with the SCT;

function of the WRMRN;

Collaboration versus competition

Allocation of resources - equitability and impact on service

improvement

Resource availability, e.g. adequate training space and capacity

Resources and support to develop flexible models of RRT delivery

Stimulating behaviour change in clinicians and patients

Catalysing patient interest

Staff and patient education and training

Clinical decision making for best practice

Managing the optimal balance of patient choice /clinician guidance

Sharing and dissemination of best practice

Acquiring the skills necessary to develop sound business cases and

work effectively with commissioners

Stimulating „culture‟ change

These points are discussed in Section 6.

5.1.3 Opportunities

Each Centre also identified a range of ideas for increasing the uptake of home

therapies. These were followed up and are reported in the findings from the

follow-up interviews. These good practice ideas and innovations for

increasing the uptake of home therapies were also used to inform the

discussions and planning of the emergent small pilot projects at identified

Renal Centre Demonstrator sites. These projects, resourced by the WMC-

HIEC are expected to test out some of the ideas to increase the uptake of

home therapies as well as facilitate shared learning and collaboration across

Centres.

42

Findings from the initial visits were used to inform and shape the follow-up

interviews. Rather than continuing to explore barriers, which are well

identified in the literature and were affirmed through the initial visits, the

primary focus of these follow-up interviews was to identify and explore

confidence and continuing concerns about meeting the CQUIN target.

5.2 Follow-up Interviews with Home Therapies Lead Nurses

5.2.1 Introduction

Between the 18th August and 13th September 2011, six home therapy nurses

participated in semi-structured telephone interviews with a researcher in the

WMC HIEC-CKD team. The interviewees worked at different Renal Centres

across the West Midlands.

An invitation email had been sent on the 15th of August following the initial

visits to the Renal Centres. Interviewees were sent a copy of the interview

schedule (Appendix 3) and a copy of the information sheet (Appendix 2) prior

to the telephone interview .

There were three main sections in the interview schedule: Background

details; Views about increasing home therapy provision; and Organising for

Increasing home therapies. The „background details‟ section sought to

understand the interviewee‟s role, their principal responsibilities and working

relationships, and the key features of home therapy provision in the Centre.

„Views about increasing home therapies‟ explored the nurses‟ views about the

commissioning for quality and innovation (CQUIN) target to increase numbers

dialysing at home to 35% by 2015, and also explored their perceptions of the

Centre‟s capacity to reach the CQUIN target. Finally, „organising for

increasing home therapies‟ investigated nurse perceptions of the Centre

strategy and associated changes in working towards CQUIN.

Each interview lasted between 30-40 minutes and was recorded for

transcription purposes with the interviewees‟ consent. Transcripts were

returned to interviewees for verification.

43

5.2.2 Nurse: job role The first part of the interview elicited descriptive information about the role of

the interviewees. From this feedback, it was apparent that their

responsibilities differed: some (n=4) had a lead role specifically for home

haemodialysis (HHD), whereas two worked in much larger teams and had

broader roles, e.g. across peritoneal dialysis (PD) services, HHD, pre-dialysis

and end-of-life care. This suggests that Centres are structured differently

according to whether there are separate staffing structures for HHD/PD

(which is then coordinated by a manager or lead nurse) or whether HHD and

PD are organised jointly and then organised across geographical areas within

a Trust‟s boundary. At times, views about this distinction emerged in the

interviews. For example, one nurse commented:

It‟s got to be dedicated home haemo and dedicated PD otherwise your staff don‟t become specialised in both areas and that‟s what you need.

In contrast, another nurse felt that their new HHD service had benefited from

being brought into the existing PD service:

Amalgamating home haemo and merging it into what was the PD service and making it „home therapies‟ – it has given it more distinction and the home haemo patients are getting more back-up.

In contrast, one nurse respondent commented that a separate HHD service

would be better for the future when numbers had risen further.

Most nurses indicated that there had been relatively recent organisational

changes in the Renal Centres. This signals the determination of Renal

Centres to organise themselves for increasing home therapies. In four

Centres, for example, the nurses interviewed had been in role for between six

months and two years at the time of the interview; prior to then there had only

been peritoneal dialysis (PD) services for home therapy. Thus, HHD services

in these Trusts had developed recently, for example, one nurse reported to

have just appointed a second member of staff to support HHD.

44

Similarly in another Centre, a temporarily seconded member of staff was

currently in place to support her deliver the HHD:

We‟re fighting for funding at the moment to make it permanent.

5.2.3 Key responsibilities

The breadth of their responsibilities was typically described as: recruitment of

patients to home therapies; training patients for home; organising for patients

to be set up at home; and then continued care and follow-up - which involves

monitoring bloods, weight and responding to any medication queries or health

issues. Although most were currently engaged in this full scope of activity, at

some Centres other staff presented opportunities for delegation or

redistribution of some of these responsibilities. For example, one nurse

envisaged that a new appointment could take a more active role in training the

new patients enabling her to focus more on the home support aspect of

provision. At another Centre, a self-care sister leads much of the training of

patients, and this is also supported by link nurses in one of the satellite units.

The important process of patient recruitment was addressed by all nurses

interviewed. Patients are identified for suitability for home therapies by

referrals from satellite centres, from the main units, from pre-dialysis nurses,

from outpatient clinics, from the PD service, from consultants, as well as from

direct contact by the nurses themselves in the units. One specifically

mentioned the importance of encouraging more patients to start on PD when

first in need of dialysis, instead of becoming in-Centre patients. Also noted

was the importance of considering the „unplanned starters‟ for home therapies

as well as those who are predictably going to need dialysis. More than one of

those interviewed highlighted how they had already approached (or

imminently planned to approach) all the patients across the main and satellite

Centres to discuss their suitability for home therapies. For example, one

nurse commented:

When I first came into post, I looked across the 200 patients and there were about 46 patients who should/who could/or who would be on some type of home therapy. We just hadn‟t offered it to them, we just hadn‟t empowered them.

45

All respondents talked about the staged way in which members of the „home

therapies‟ team support patients (often as „named nurses‟); typically visiting

for the first few sessions, then gradually shifting towards fortnightly, monthly

or three-monthly visits. However, the importance of a 24/7 „point of contact‟

for patients to ring into the team when they face difficulties was strongly

emphasised. One Centre nurse talked specifically about flexibility to offer

respite care for those on HHD; she had recently brought a patient temporarily

into the unit, and he had now returned home. This nurse also emphasised the

value in formalising respite facilities for the future, and the potential to develop

an assisted HHD service.

5.2.4 Views about increasing home therapy provision

All interviewees were asked about their views towards the target to increase

home therapies. Many said that they felt it was a “good thing”, “important”,

“meant that were pushing it a bit more now”, that it made economic sense,

and that there were patient benefits in reaching the target (see below).

However, these comments were frequently followed with concern that they did

not want to be penalised if they could demonstrate that every effort had been

made to achieve it, that it was in danger of being “unrealistic”, or that the

focus shouldn‟t be on “achieving the target for the sake of achieving it”,

because patients‟ choice was imperative.

5.2.5 Current numbers on home therapy

All nurses interviewed were very positive about their achievements to date in

encouraging patients to receive home therapies. They were happy to share

their approximate number of patients at home, number in training, number

waiting to join training, and some also had a list of potential home patients to

be approached shortly for a fuller discussion about home therapies.

Respondents exuded positivity about their achievements to date. For

example, one nurse commented:

There are seven at home now and I‟m training two more now. We should have nine home hopefully by the end of September….I‟ve got a waiting list of about six patients who want to start and I‟ve got three patients to look at tomorrow who are all interested.

46

Notably, although all gave approximate numbers of home therapy patients in

their Centre, it is not considered appropriate to report this information here.

Predominantly, this is to protect their anonymity, but also because

interviewees had responsibility for different aspects of service provision, and

finally because interviews were conducted across a 4-week period. Thus, the

comparability and the accuracy of figures discussed cannot be guaranteed.

5.2.6 Reaching the CQUIN target

To explore their views about capacity and capability to reach the target,

interviewees were asked: On a scale of 1 to 10, where 1 is „not confident at

all‟ and 10 is „extremely confident‟, how confident are you that the Centre will

reach the 35% target by 2015?

Responses were mostly very positive. Scores provided by the nurses ranged

from 5 through to 10, and the individual scores were: 5, 7, 8, 8, 9 and 10

indicating that most were certain about reaching the target. This most likely

reflects their attitude about the headway already made, and the Centres‟

enthusiasm for future plans.

Two Centre nurses elaborated that they could envisage an increasing

momentum: they anticipated that as more patients moved towards home

therapy, a change in culture within the Centre could release even more

patients over time i.e. the numbers feed off each other, and that patients

become more interested through advertising and word of mouth. This was

endorsed by another nurse who commented that the development of HHD

had been “a slow burn to start off with because it was so new”. These

comments suggest a possibility that the home therapy agenda may gather

momentum as expectations amongst staff and patients change and home

dialysis becomes more normalised.

Notably, however, in providing the scores, the interviews typically led to a

fuller explanation of the main constraints in not being „fully confident‟ (i.e. why

they had not provided a score of 10). These issues are discussed below.

a) Patient factors were mentioned by several of the interviewees as a

potential constraint in their confidence to reach the CQUIN target. Although

47

all interviewees were positive about impact of home therapies on patients,

several cautioned that a key factor in reaching the target would be the level of

patient interest. This includes the patients‟ space to accommodate dialysis at

home, whether they‟ve got support at home, the nature of their residence

(permanent or not) and patient attitudes. Indeed, several nurses interviewed

talked about the specific issue of patients‟ willingness to self-cannulate:

A lot of patients we talk to would consider it if it weren‟t for the fact that you have to cannulate; that‟s a barrier for a lot of patients. As much as I talk about patient experience…that‟s coming from my perspective and I‟m not a patient and I don‟t do it to myself

The introduction of button-holing2 at one of the Centres was highlighted as a

significant step forward in this process; the interviewee felt it had been worth

the effort securing the extra finances required for this.

Several mentioned the need to be careful not to rush patients already

dialysing in hospital and that changing patient attitude can take time for them

to be ready actually to consider going home.

I think there was anxiety with patients who were already on dialysis, moving from that comfort zone of being looked after – come in, switch off your brain, everything done for you – to then having to take that responsibility on.

Nurses interviewed were extremely supportive of the benefits for patients in

receiving home therapies; each of them readily championed the advantages

of patients receiving home dialysis. Nurse interviewees welcomed the

opportunity to emphasise the increased flexibility for patients (for family life,

working and for hobbies), loss of travelling time and transport issues, physical

benefits (“Some patients just feel physically better”) which was associated

with opportunity for more frequent dialysis, the benefit of patients taking more

responsibility for their condition and patients retaining greater physical fitness

2 Buttonholing; a specific approach to self-cannulation which aims to reduce tissue damage and pain

thus improving duration of the access site and patient independence. A patient perspective and

training video is available via Greg Collette’s patient blog

http://bigdandme.wordpress.com/2010/09/24/dialysis-and-the-ins-and-outs-of-buttonholing/

48

in readiness for transplant. The advantages for patients were well articulated

by all nurses interviewed.

All also had testimonies which they shared about their home patients. Nurses

described the breadth of age ranges (from their 30s to late 80s), the fact that

many were in employment (e.g. one Centre commented that “four out of the

seven [at home] are working and the two I‟m training at the moment also

work”. Indeed, many „success‟ stories were supplied, for example, individuals

who had been particularly resistant to change, anxious patients, patients who

were now able to work but previously hadn‟t been, patients who had

successfully become lone dialysers, patients going home on necklines,

patients with multiple morbidities, patients on the transplant list, and so forth.

Most of these concluded with the nurse stating that patients do not choose to

go back to in-Centre dialysis once established at home:

My first patient, he‟s a 65 year old gentleman; he‟s been on dialysis for seven years and at home now for over two years and he wouldn‟t go back to the Centre”.

b) Effective staff communication was an important factor highlighted by

interviews in encouraging home therapies. One Centre highlighted the need

to:

reinforce occasionally [the message with staff]… to get us all singing from the same song sheet.

This was mainly attributed to the busyness of the Centres and that there can

sometimes not be the time to promote self-care:

It‟s easier to do it for people than it is to teach somebody. It‟s quicker than to teach somebody to do it for themselves.

In this particular Centre, the establishment of link nurses from each satellite

Centre had helped in channelling communication through staff teams. Others

talked of staff „getting the hang of it‟ and that they now tell the nurse about

particular patients interested in home therapy, commenting:

She‟s seen your stickers‟ or „She‟s seen your posters on the wall‟, can you go and have a word with her?

49

Such statements support the value in displaying posters and patient

information – in raising awareness for both patients and staff. However, the

challenge of changing staff views was really only emphasised by two of the

interviewees. For one, the importance of drawing patients‟ attention to PD in

the first instance required a change in attitudes within the system – the ideal

being that each therapy has equal weighting. Another noted that achieving

the target required a “change in our practice” to push everybody towards

home dialysis and self-care to start with.

c) Training facilities and resource constraints. In respect of each Centre‟s

capacity to reach the CQUIN target, training room facilities and staff resource

to train patients for dialysing at home was an important issue for several

interviewees. With the exception of two Centres, where the nurses

interviewed were pleased with the progress that satellite Centres had made

with preparing patients for home therapy (i.e. from self-care towards

preparation for home), most were concerned about insufficient facilities. For

example, one HHD nurse expressed her view that their training room with

machines to train two patients at a time was restrictive, especially with only

herself able to train, although this limitation had been recently eased by the

appointment of an additional member of staff. This respondent commented:

I think there are sufficient patients out there but it‟s just the resources to carry that through. Now that we‟re increasing our staffing, we‟ve got the potential of training more at a time

In contrast, at another Centre, the nurse was positive that there was now

space to train two patients at a time and staff can train at any time. This has

meant that 4 to 6 patients are trained each day.

Another nurse spoke about her disappointment with only having space to train

within the existing Centre facilities i.e. there was no separate training room.

She noted the limitation that the HHD training space (and the minimal care

service) was provided only during the twilight session. Her ideal would be to

have a separate training room and provide training at different times during

the day (“It‟s an issue with the resources”).

50

Indeed, the limitation of insufficient numbers of staff to support the expansion

of home therapies was an issue which several interviewees highlighted,

particularly those working specifically in HHD provision. Although they

acknowledged the need for greater numbers of staff working in the PD service

given the significantly larger patient cohort, all three believed they could

develop HHD further with an expansion in the numbers of staff.

5.2.7 Driving Home Therapies forward

Most interviewees were explicit that there was a plan for moving forward with

the home therapies agenda in their Renal Centre, but most cautioned again

that achieving the plan depended on “resources and communication a lot of

the time – it‟s just getting the message out there”. One nurse specifically

highlighted that their Centre‟s Renal Strategy for 2010-2014 helped to tell

them „where we should be going… [and] who should be taking a lead of what

areas‟. However, responses were summed up by one comment:

[we have] a clear vision but haven‟t worked out all the details yet!.

Notably, there was a strong sense from many of the nurses interviewed that

they had personally taken a clear leadership responsibility for achieving the

home therapies agenda. When asked „who is the driving force to take the

home therapies forward?‟ one articulated:

If you‟re looking at CAPD, it‟s the CAPD staff, if you‟re looking at home haemo, it‟s me. It has to come from a bottom, middle ground person.

Managing the achievement of increasing home therapies was principally

articulated in terms of monthly multi-disciplinary team meetings – typically

these involved consultants responsible for home therapy patients, clinical

directors for renal services, business managers, representatives from satellite

Centres (e.g. link nurses), nurses and managers responsible for home

therapies, managers from the haemodialysis unit, and sometimes technicians,

estates, dieticians and secretaries. In some Centres these meetings were

specifically „home therapies meetings‟ or even „home haemodialysis

meetings‟, and they were clear that “It‟s a big objective to get the 35% home

and we have monthly meetings to discuss things”. In other Centres, the

meetings were more generic „renal forum meetings‟ where home therapies

51

was an important part of a wider agenda. For the most part, all meetings had

evolved over the last year and entailed minutes and action plans. The

importance of team-working was evident from the membership of such

meetings. It was also a way of sharing innovation, e.g. a new „tracking system‟

developed by one Centre as a way of monitoring patients‟ progress towards

home, which is discussed at these meetings.

Finally, interviewees were asked to outline some of the key activities and

„successes‟ that they had been achieved in the last year or so. These are

summarised below:

5.2.8 Strategies planned and successes to date:

a) Education for patients. The importance of reaching patients at pre-

dialysis (including the „unplanned starters‟) was emphasised by nurses

interviewed; this was seen as the optimal time to recruit patients to home

therapies. It varied whether interviewees were directly involved in this pre-

dialysis counselling or whether they received referrals from other staff

undertaking this role. Information days for patients and carers were also

mentioned with great success.

b) Patient educational tools. These included poster campaigns (“posters

up in each unit”), information leaflets and teaching packages. For

example, several had developed patient DVDs showing patients‟

experiences in using PD/HHD/in-Centre dialysis, patients‟ sharing their

views and why they chose home therapy.

c) Minimal care facilities. Several Centres highlighted that a positive

development for their Centre had been the establishment of a minimal

care facility. The purpose of this was described by one nurse as “for

patients who are perhaps unsure about going home but would like to…. I

think that once they realise they can do this, they can do that, and they

start thinking „It‟s not that difficult is it really: I could do this at home”. It

was mentioned that some patients need to move to a „step down‟ area

where they can be in a „controlled environment before they‟re ultimately

sent home‟. One nurse added that minimal care facilities enable patients

52

not to feel the immediate pressure to leave for home before they are

ready; in her view this prevents patients from losing confidence and

wanting to return from home therapy back to in-Centre dialysis. One nurse

noted that they were currently trying to secure funding for the extra staffing

required for a minimal care facility at one of the satellite Centres.

d) Dedicated patient training rooms. Some Centres already had

separate training rooms, others did not. However, at least one of those

that had a separate room for training purposes expressed disappointment

that they could train very few patients at a time. One Centre nurse

commented that “Ideally we‟d have a nice unit like in Manchester where

we could train four-six patients at a time”.

e) Nocturnal dialysis. This is a service development, to which two Centre

nurses drew attention. They had secured between one and two patients

on nocturnal dialysis and were delighted to have set this up.

f) Respite care. As noted above, at one Centre, the nurse specifically

mentioned that she had organised temporary in-Centre care for a home

patient, so that he could return home when ready. There was an interest

in developing respite provision more formally, perhaps offering assisted

HHD, rather than in-Centre respite.

g) Flexibility in patient criteria for home therapies. There were many

examples of instances in which nurses had pushed for more flexible

criteria for accepting patients for home therapy. For example, patients on

the transplant list, lone dialysers, patients with co-morbidities, with

necklines.

h) Staff training. Several highlighted staff training events that they had

been involved in delivering. For example, a training day on home

therapies for district nurses, „renal study days‟ (with different members of

the team talking about different aspects of the service, e.g. anaemia, bone

phosphates, home therapies) and training for link nurses.

53

i) Conference attendance. Several mentioned that they would be

attending a home haemodialysis conference in Manchester in September

which they hoped would provide „more information about home dialysis‟.

j) Appointed link nurses. In a couple of Centres, the nomination of „link

nurses‟ who work in each satellite Centre and represent a point of referral

and communication about home therapies was strongly praised. This was

seen to work well in terms of their attendance at home therapy meetings,

cascade of information to satellite teams, and a point of contact for the

home therapy team. At one Centre, their main function was to forward

referrals onto the home therapy team, so that they, in turn, can follow-up

the patient themselves. At another Centre, link nurses at one of the

satellite Centres were training patients, and the HHD lead hoped that they

could be encouraged to start taking patients home too.

k) Equipment and practical resources. Notably, only one Centre nurse

expressed concern that patients can face delays with going home due to

insufficient machines, and technical issues, particularly towards the end of

the financial year. However, many interviewees‟ only comments about

equipment were about the benefits of portable machines (e.g. NxStage).

These were seen to provide increased flexibility for patients, helpful to

patients in no fixed abode, those without adequate space for a

conventional dialysis machine, or those wanting to go on holiday. Two

Centres mentioned that they were looking into the NxStage equipment

amongst other options: “so we‟re looking for anything out there that is a bit

more user-friendly which will then reduce the training time”, although its

high cost was highlighted by one Centre as a constraint. Most of the other

Centres talked about already using NxStage, and highlighted the value of

the staff training that they had already accessed from the NxStage

company. One nurse mentioned that they may consider NxStage for

nocturnal dialysis. Other equipment developments were also highlighted to

have brought success. For example, the tray system of equipment led by

a technician at one of the Centres has helped to reduce risks of HHD.

Button-holing is also a strategy which has been introduced with success to

help with patient cannulation.

54

5.2.9 Conclusions from follow-up interviews with Nurse leads

In conclusion, feedback from a sample of nurses currently working at Renal

Centres in the West Midlands in a home therapy role has provided an

extremely positive impression. Their high level of enthusiasm and

commitment to increase the numbers of patients receiving dialysis at home

was clearly evident. The nurses were also delighted to take part in the HIEC

work and were generous in sharing their views and details about their activity

to date.

Although job roles differed amongst the group, and some were solely

responsible for HHD, whereas others had a joint PD/HHD role, there was

significant unanimity in terms of their key responsibilities. A principal focus

was recruitment of patients for home therapy; this was driven largely by two

factors: their sense of benefit for patients to receive home therapy rather than

in-Centre dialysis; and the urgency imposed by the CQUIN target. Without

doubt, the target setting culture engendered by the CQUIN had permeated the

Renal Centres, the agendas of their monthly multi-disciplinary team meetings,

and it was a strong influence on the priorities of the nurses interviewed. All

interviewees were actively engaged in a range of ways to recruit patients for

home therapy: attending outpatient clinics, talking to the in-Centre dialysis

patients, making DVDs, displaying posters, attending and organising staff

training events/meetings, and so forth. The importance of continued staff

communication and education was emphasised for the recruitment of patients

to home therapies. Resistant staff attitudes was mentioned by two

interviewees, thus it can be concluded from these interviews that for the

nurses interviewed, staff resistance per se was not a significant barrier to

patient recruitment.

The nurses interviewed expressed broadly positive views towards achieving

the CQUIN target. Their confidence to reach the target was relatively high; all

considered that their patient recruitment figures were progressing well, but

that the key constraint in terms of patient throughput to home therapies was

their Centre‟s training room and staffing capacity. Many concrete examples of

achievements and developments were provided.

55

Overall, the analyses of these interviews provide a nurse perspective of the

evolving home therapy provision in Renal Centres in the West Midlands.

They each expressed a powerful voice of the benefits of home therapy for

patients, some notably acknowledged the importance of choice for patients,

and all were mindful of the practical and psychological constraints of

equipping patients with the confidence for home therapy, in particular, to

cannulate themselves in readiness for HHD. There was evidence provided

from all of them that different patients require different levels of support and

training duration before feeling confident to receive home therapies. There

was consensus that minimal care provision was an important component in

supporting the transition towards self-management.

All nurse interviewees had ideas about how their Centre‟s home therapies

service should be expanded and improved for the future. Exploration of

different dialysis equipment (for example, uptake or expanded use of

NxStage) was mentioned by several of them. So too was further

consideration of nocturnal dialysis, and innovative ways to overcome potential

barriers patients face (e.g. lone dialysers, not in owner-occupied permanent

accommodation, residential care, council tenant, insufficient space for

dialysis machines, more dedicated training provision). It was evident that all

were involved in regular team meetings to try and address these challenges in

light of resource constraints and were trying to be ever more flexible in

meeting patients‟ needs. Finally, although all interviewees were experienced

renal nurses, given that many had only been in their current post for a year or

two, there was a definite sense of momentum and pride in their initial

achievements. Their determination to progress home therapies even further

for the future was completely evident.

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5.7 Follow-up Interviews with Renal Technicians

Six semi-structured telephone interviews were conducted between 16th

August and 31st August 2011 with renal technicians from six of the seven

renal Centres in the West Midlands. Information on equipment used by the

remaining Centre was obtained by informal communications.

5.7.1 Summary

All technician interviewees were enthusiastic in providing information. The

questions covered the models of dialysis equipment used in Centres and by

patients at home, and the reasons for choice. Also discussed was the

possible impact of central commissioning, the influence of „portable‟ dialysis

equipment such as the NxStage on home adaption/modification costs, and

any simple technical modifications which could improve home haemodialysis

equipment. The collated responses from technicians are provided in

Appendix 6.

The interviews showed that the dialysis equipment used differed from Centre

to Centre. No one manufacturer or model entirely dominated, although the

Fresenius 4008S, a model now out of production, was widely used particularly

at home by patients. How this knowledge is influencing future procurement

planning by the Specialist Commissioners was not explored. Many, but not all

Centres used, the same model of equipment for home haemodialysis as used

in the Centre. Dialysis machines used by patients at home included:

Fresenius 4008S, Fresenius 4008H, Fresenius 5008S

Braun Advanced and Braun +

Gambro AK 96

NxStage

A few patients were using the NxStage. It appeared Centres may be prepared

to try patients on this „portable‟ equipment but not all were totally convinced of

advantages and were concerned with costs of disposables. Details of systems

57

commercially available can be found in the CEP buyers guide

www.cep.dh.gov.uk/CEPProducts .

Instrumentation used in home haemodialysis was often chosen, to coincide

with that used in Centres. This provided uniformity, advantages in experience

of use, familiarity, servicing, and recognition of performance.

In general it appeared that the renal technicians did not perceive major

problems with existing equipment either in terms of size, simplicity, ease of

use, reliability, performance, convenience or training. Possible improvements

and limitations were recognised but on the whole it did not appear technology

was the main reason for constraint of expansion of home haemodialysis.

Although recognised as an issue, most technicians thought current equipment

could be situated in a home environment with „minor‟ structural modifications

including providing a specific space, often using a tray system, and providing

appropriate water, drainage and electricity points. Costs quoted were in the

region of £1,500 to £2,500 but as external contractors may be used, several

thought it may be possible to reduce this. It was thought that central

commissioning may be able to reduce costs of equipment, disposables and

installations but there was concern that there should be no decrease in choice

available.

Centres were aware of the „portable‟ NxStage home haemodialysis equipment

and the system appeared to be being used by a few patients. Although the

system was smaller than other equipment and could be used without a

reverse osmosis unit, several technicians questioned the overall advantages

of the system. Issues included overall cost implications, the exact manner the

system could be used and logistic issues surrounding use and storage of

disposables. An in depth independent review of the systems features, and

comparison of these and healthcare economic aspects against equipment

currently available was mentioned and could prove valuable.

Centres outlined several minor features which could improve existing

equipment. These included integrating the dialysis system and the reverse

osmosis unit to save space, and making the systems a bit smaller and to look

58

a little less clinical. Several features available for use with existing machines

such as devices and alarms for detecting needle dislodgement and leaks, and

a mechanism for automatically transferring the patients treatment records to

the unit exist but would be improved if available at a lower cost.

It appears that „technology‟ and the equipment currently available is not the

major barrier to increased uptake of home haemodialysis. Increased uptake

is already achieved in certain areas with existing systems.

Although vascular access and self cannulation remain important issues, as

with other home based therapies, service delivery, philosophy, education and

culture change remain key areas to be addressed if increased uptake is to be

achieved. Once these are addressed, relatively simple advances in, or

applications of, technology would be able to further facilitate uptake. Home

haemodialysis equipment must provide the treatment prescribed, be simple to

use and it must be reliable retaining the confidence of patients and healthcare

staff. „Portable‟ equipment such as the NxStage is attracting interest,

however while different equipment systems are available and in use, an

impartial „evaluation‟ or summary dealing simply with their key features,

practical issues, advantages/limitations and economic consequences would

prove a useful tool in helping determine how technology can best help

facilitate uptake in home haemodialysis care.

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5.8 Follow-up interviews with clinicians responsible for

patient flow data

As identified in Section 4, information was gathered from a number of sources

Six semi-structured telephone interviews were conducted between 11th

August and 7th September 2011; these lasted between 11 and 39 minutes.

The interviewees were from five of the seven Renal Centres in the West

Midlands. One was a senior nurse with responsibility for monitoring patient

flow data, the other five interviewees were consultants with lead roles in home

dialysis.

All interviewees were in favour of increasing the percentage of patients on

home therapies, for example:

There‟s no doubt that it‟s good to be moving more patients onto home

therapy

Reasons given included:

The health benefits of more frequent haemodialysis

That home therapy is cheaper and equally effective

A means of empowering people to look after themselves.

5.8.1 Impact of the CQUIN

Two interviewees described negative initial reactions to the introduction of the

CQUIN : „It‟s not fair‟ and „ Oh, I can‟t do that „

However, both were positive about the resultant change generated. The

graduated implementation, whereby half the CQUIN is received for being half-

way towards the target, was felt to be good.

When asked about the positive and negative effects of the 35% CQUIN target,

respondents agreed that a target is helpful:

focussed everybody‟s minds

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across the region, the introduction of this CQUIN has boosted the home therapies in a big way

One respondent said that the CQUIN enabled clinicians to gain more money

and flexibility for doing what they wanted to do. Another commented that

because of the CQUIN, there was less resistance within the team.

The target was thought by one respondent to have stimulated a region-wide

increase in home therapy by reducing „physician bias‟

A variety of Centre-specific approaches to reaching the target were described:

“„carry on as we are‟, we‟ve enthusiastic staff, but it‟s a long slow

process”

Three units were focussing on PD and felt their PD programmes were

very successful.

Another unit had introduced assisted APD for unplanned starts

Similarly a Centre is developing a pathway for unplanned starters to

give them rapid counselling and show them the benefits of home

therapies i.e. rapid pre-dialysis education.

Revisiting patients who were having hospital HD was proving useful:

“we‟re finding more people who would like to do home therapies.”

Possible introduction of a minimal care process

The use of the NxStage was mentioned in relation to three Centres.

One interviewee said:

it‟s good as you don‟t need home conversion and is being promoted by

patient advocates.

This Centre has just completed a successful two month trial to check logistics

and the machines. Their aim is for 25 to 30 patients by the end of the year.

It is an expensive treatment ... getting the CQUIN money as well allows you to do it” but they expect costs to fall. It‟s seen as particularly useful for those who are likely to receive a transplant due to the minimal capital investment.

We are very fortunate that the trust has done extremely well to fund the NxStage. We already have 4 patients on it, and 2 more are going on.

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My view is that there‟s a whole barrage of things that‟s going to sort it out

Some interviewees expressed concern that at local Trust level, CQUIN

payments may not always be ring fenced for use by the service which had

earned the incentive. Others were anxious about the possibility that future

tariff changes or policy changes regarding incentives may impact adversely

on sustainability of service developments.

There were real concerns that the CQUIN and similar incentives may lead to

tacit or coercive pressure to reach targets even if this was not the best clinical

decision or in patients best interests

A number of barriers to reaching the 35% target were mentioned:

Patient reluctance to have haemodialysis at home due to lack of space,

worry and fear of needling: “home haemo is the hardest to crack”

Patients may be positive about attending the renal unit due to social

contact, especially for those who live alone and have low travel

distances which mean that “there‟s no real advantage dialysing at

home if you‟re very close to the unit”

Existing satellite facilities, particularly those that are privately run, may

not want “to sell home therapies to patients as they[ would be] doing

themselves out of a job”

Changing demographics. It is clear that the number of younger, fitter

patients is stable as most have congenital kidney diseases but the

number of older, frailer patients is increasing

The sheer number of patients who would need to choose home

therapy: “For one in three on home therapy, you actually need 2 out of

3 [entering dialysis ]”

Finally clinicians “may be giving different or incorrect messages”

5.8.2 Reaching the CQUIN target

In response to enquiry about their confidence to reach the 35% CQUIN target,

five out of the six interviewees scored their confidence at 7 or greater.

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we‟ve been told we‟re the fastest growing PD unit in the region

Interviewees felt that barriers are surmountable as the culture changes.

Despite these optimistic predictions, several then proceeded to cite difficulties:

it‟s been difficult to facilitate patients to manage the machine and manage their needling;

we need “continued support from the trust and commissioners;“

we don‟t monitor this minute by minute.

Three said the CQUIN “conflicts with transplant rates” as there was a

temptation not to want to „lose‟ a home therapy patient.

However, another interviewee said:

I think those other factors are different issues and will just complicate matters...everyone knows that having a transplant is better than dialysis and not having renal failure at all is better still and that the tariff rewards transplants

5.8.3 Optimal incentives

Although respondents were generally happy with the CQUIN target some

were unsure that 35% was the correct level. One respondent felt “30% is

probably more realistic”.

The remaining respondent felt the overall idea was right:

I‟m not so sure about the target, but certainly believe that measuring those patients who are on the [home] therapies is worth doing as a percentage

Concerns related to lower targets elsewhere in the country, difficult

demographics and that currently a “selected group” with low risk factors

undertake home therapies. Concern was expressed that as people with

greater difficulties and co-morbidities undertake home therapies, the costs

and complications are expected to rise and also that there is limited evidence

as yet to help understand the cost: benefits equation:

there‟s no evidence that they‟ll continue to do better as you push the boundaries.

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One interviewee explained:

I don‟t think any unit in the country has gone through this to its logical conclusion... 35% was plucked out of the air, but ... it‟s a reasonable target to go for? We‟re really pushing home therapies at the moment, if we get to the position when we have everything really good... and still got penalised, then you‟d lose the confidence of the clinicians, it would become a purely financial target; the whole agreement based on patient choice would fall down. If you get penalised because you haven‟t hit an arbitrary number and you think you‟ve got your process right and no one can demonstrate you‟ve got your process wrong it will have a reverse effect on motivation and potentially on patients

The split between PD (25%) and home HD (10%) was rarely mentioned, but

one interviewee thought that 27% and 8% should be equally acceptable. Two

interviewees felt “there‟s no incentivising to transplant quicker”.

Given the substantial investment of time and effort required to start a patient

on home HD, two interviewees felt that some credit should given for the

percentage of people who go home for dialysis as well as the percentage at

home at any one time. This is because there may be higher turnover of those

on home therapies as patients receive a transplant and for some home based

therapies, life expectancy is low:

Assisted APD patients tend to be those with low life expectancy, so the turnover is high.

The half life of home haemo is 1.7 years, so you need an awful lot going on and off to get your percentage large.

It was felt that specialist regional commissions should talk more with the

individual units, particularly in terms of facilitating the funding to increase

home therapies and building liaison with local commissioners. Some

interviewees welcomed the independent nature of the WMC-HIEC.

Several interviewees suggested that the commissioners should consider

process as well as outcome. This would allow identification of best practice,

but more importantly, a Centre may have done everything possible yet a

patient still has the right to choose to dialyse in Centre.. or may feel home

therapy is not a feasible option for their circumstances:

in East London, homes were so small, they couldn‟t do home therapy.

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Two others expressed concern about the possibility of coercing patients, with

one saying:

If the unit has done everything... and still can‟t get to 35%, then you might get a bit of coercion.

[There is] mixed language from the commissioners. We are asked to give unbiased information but also promote home therapies. What happens when we get to the point when we‟ve genuinely offered it to all people and they just don‟t want it?

However, this respondent acknowledged the possibility that staff may think

they have done everything that is reasonable but had not done so effectively.

Another interviewee did not think coercion was a problem as “we know the

benefits of home therapies”.

In contrast, one interviewee felt:

everyone has a different set of problems, and those are marginal: these problems are often an excuse for not thinking about processes in a scientific, technical way.

Another commented that all Centres face challenges:

rural patients may be older, but inner city areas have smaller houses so overall it‟s about equally difficult for all Centres.

When asked about ways of overcoming these challenges, one interviewee

commented on the inevitable time lapse between decision and results:

To change from the previous hub and spoke model is like turning round an oil tanker.

Nevertheless there are possibilities:

I think the way forward is peer support group, it‟s sharing... I‟ve got more from listening to how other units do things” there‟s a very, very positive atmosphere about home therapies throughout the unit... We‟ve turned people around; they are selling it to the patients.

These identified barriers and concerns are discussed in Section 6.

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5.8.4 Monitoring data for clinical purposes

As expected, all Centres monitor the percentage of patients on each type of

renal replacement therapy and see the value in having “regular time series

data about your performance against your own practices and ideally some

measures of your key process steps.” However, one interviewee said they

don‟t have the monitoring “as slickly organised as I would like” so are creating

a new, more systematic database. Respondents mentioned measuring other

information such as the numbers with fistula and central line access. Two

Centres mentioned monthly meeting to look at these figures. One described

the value of knowing which patients had chosen which modality:

Recently, only 25% had chosen PD; as only 70% of those who choose PD will end up on PD, we need to increase this to at least 35 to 40%.

One interviewee explained how they were trying to make the system easier:

we have all the information in different bits; for example, we don‟t automatically have on the renal system, the date referred by the GP. At the moment, we‟re covering what I want and we can pull out the data needed quickly

5.8.5 Value of the Renal Registry returns

Three interviewees were very positive about the Renal Registry data as “The

registry is phenomenally powerful” for example “we get comparators like on

mortality, haemoglobin”. This is “even though the reports when published are

one or two years out of date”. In contrast, another thought it was “not nearly

as useful as it could be” as it‟s always out of date, there‟s “lingering doubt as

to the comparability of returns from different units” and the results “tend not to

be of fundamental merit to the patient pathway.”

Regarding the link between their own databases and the information sent to

the renal registry, one said it was the same data “so not duplicating work”, a

second interviewee said this was largely the case; two others said their

system “doesn‟t link into the renal registry return” and a fifth said “it‟s

extracted remotely without us knowing about it”

One respondent explained that every time someone dialyses, the specialist

commissioners are informed and that there is exception reporting e.g. to

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explain when patients do not dialyse 3 times a week perhaps because they

refuse or they need less with their palliative care. Another said this modality

and access data sent to the commissioners should be used creatively as

“open reporting of how Centres are doing would feed into clinicians‟

competitive instinct‟‟.

5.8.6 Understanding Flow through the clinical pathway

The WMC-HIEC team adapted a flow diagram contributed by the Specialist

Commissioners. This is shown in Figure 5.1

Figure 5.2: Basic pathways for CKD Stages 4 and 5

Contrasting views were expressed about the quality of the monitoring of

patient flow data and the degree to which this was integrated with returns to

the renal registry and specialist commissioners. For efficiency, Centres would

value a single set of returns for all monitoring purposes.

One Centre reports recording data relating to all aspects of preparation for

RRT. In this Centre, CKD nurses actively use the computer system to

manage the patients; this is particularly important when seeing patients in

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different hospitals to check all the pre-dialysis education has been

undertaken. Because it is an electronic system, the number of patients at

each point on the pathway can be extracted. This has allowed the Centre to

demonstrate that counselling patients with a GFR =22, enables them to live

longer than counselling those with lower GFRs as “they stabilise their renal

function for longer”.

This Centre is planning to use their database to research how well their

patients are psychologically adapted to their condition.

One clinician interviewee said that all patients attending CKD clinics were

exposed to the same education programme so that modality decision is

essentially patient choice. A third said the data were not sufficiently large or

robust enough reliably to find anything new while a fourth felt the data has

been well worked out so there is little point seeking more information.

The majority view appeared to be summarised by the following opinion:

I‟m sure all the trusts in the region know the barriers and limitations and

are working towards it. I don‟t think investigating the metrics would add

anything more.

However it is possible some of these views are perceptions that are not

supported by research evidence; for example, Jones (2009) and NHS Kidney

Care (2010c) suggest that the factors relating to ethnicity are poorly

understood.

5.8.7 Patient flow as a process

One interviewee stated that the main priority is: “to get people to measure the

right things about their processes‟‟

This suggests a belief that the CQUIN target is achievable whatever the case

mix in different Centres:

we have a lot of Asian patients on PD but it is much better to look at cultural differences in terms of family network than ethnicity

Again, some of these points are further discussed in Section 6.

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In summary, the findings from the consultation with Renal Centres suggest

there was confidence and enthusiasm to achieve the CQUIN target, and a

range of activity was demonstrated. However, some organisational, and

human behaviour factors were identified, which, if overcome, could support

the Centres in furthering their endeavour towards increasing home therapies.

Some of the factors which may be most amenable to change are discussed in

the next section.

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Section 6. Analytic commentary

A variety of data sources have been synthesised to distil this analytic

commentary. These data include the information presented in Section 5,

from initial Renal Centre visits: follow-up interviews with selected NHS staff;

information gathered at the WMC-HIEC-CKD stakeholder seminar on 6th

September. Also integrated here are research literature and policy documents

(summarised in Section 3) and information from a range of websites for both

professionals and patients (for example, Kidney Patients Association, UK

Kidney Federation, Kidney Research UK, The Renal Registry).

Inevitably, this commentary on the WMC-HIEC-CKD work to date is tentative,

for several reasons: the consultation by the WMC-HIEC team cannot achieve

a comprehensive understanding of the context in this limited time- frame; the

follow-up interviews excluded staff not directly involved in home therapies

programmes; patients and carers were not consulted on this occasion and

workforce skills mix was not explored in detail. Some of these factors are

identified in the suggestions for further work in Section 7.

Identified below in Figure 6.1 are the main organisational and human

behaviour factors and technology issues related to increasing the uptake of

home therapies which emerged from this WMC-HIEC consultation with

Renal Centres. There were differences between the initial visits and the

follow-up interviews in respect of factors identified and their proportionate

importance. This may be explained by the wider cross section of staff

contributing to the discussion at the initial visits and the broader focus of the

questions. The initial visits explored barriers as well as enablers. In contrast,

the follow-up interviews focused more towards exploring staff views about

achieving the CQUIN. The follow-up interviews were specifically with staff

involved in increasing the uptake of home therapies, eliciting more positive

views, experiences of enabling initiatives and conveying greater confidence

about achieving the CQUIN.

The following figure summarises the factors that have emerged from the work

conducted to date. These factors are elaborated below in Sections 6.1, 6.2

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and 6.3. Individually and collectively each of these factors impact on

successfully increasing the uptake of home therapies. Finally, Section 6.4

integrates these factors and synthesises them into a macro-level summary

using an adapted version of Porter‟s Five Forces model (1980).

Figure 6.1: Summary of factors related to increasing home therapies in Renal Centres in the West Midlands

6.1 Organisational factors

Availability of training resources

Patient involvement in training and education

Patient flow as a process

Flexible delivery models of RRT

Collaboration, competition and commissioning

Working effectively with commissioners

The impact of the CQUIN 6.2 Factors related to Human Behaviour

Psychological impact of moving dialysis closer to home

Culture, including staff commitment

Staff and patient education and training

Role of simulation in cost effective education and training

Sharing and dissemination of best practice 6.3 The Potential of Technology to support and catalyse uptake

6.1 Organisational factors

6.1.1 Availability of Training Resources

A number of respondents felt the uptake of home therapies in their Centre

would be expedited by provision of dedicated training space and sufficient

staff capacity to make effective use of these facilities. It was suggested that

the visibility of a training space would itself stimulate interest from patients. In

turn this would be likely to increase the influence of peer role models, as well

as stimulate the need for developing patient champions and peer mentors.

Peer influence and support is a powerful factor in patient choice (Hughes

2009, Agraharkar et al 2003) and was signalled as an area of potential

interest for further development from some of the Centres.

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6.1.2 Patient Involvement in Training and Education

There may be real potential in developing a role for patient champions and

peer mentors to stimulate interest and to help deliver education, training and

support. This would also have the dual benefit of facilitating stronger patient

and carer voice in the design and delivery of services. Greater involvement is

a DoH policy imperative but has also been shown to improve both quality and

patient choice (e.g. Agraharkar et al 2003, Hughes 2009, Winterbottom et al

2011).

Despite clear government rhetoric, it is unclear how much these policy drivers

are stimulating greater patient involvement. Education programmes such as

the Expert Patients‟ Programme have had mixed success and have

experienced difficulties in recruitment and retention of participants, particularly

from disadvantaged groups (Coulter and Ellins 2006). Blagg (2008) noted

that the Expert Patients‟ initiative did not appear to have been extended to

patients on dialysis. A review of NHS patient surveys in England from 2002 to

2007 concluded that information needs are not always met, that many

patients want more involvement in decisions, shared decision-making is not

widely practised and some patients do not receive enough help with self-care

(Richards and Coulter, 2007).

A number of Renal Centres are already developing peer role models and

involving patients in pre-dialysis education. Clinicians who took part in this

consultation were most anxious to achieve best practice in these aspects of

care, so there is both the intention and the political will. It was evident,

particularly from the nurse interviewees, that if resources allowed Centres

already have an abundance of excellent and evidence based ideas for further

development of patient involvement.

Partnerships such as the WMC-HIEC may also be a cost effective way of

facilitating new models of service delivery, education and involvement. The

continuing work between Renal Centres and the WMC-HIEC team will help

explore service improvement and achieve several small pilot projects to test

out ideas for increasing the uptake of home therapies. These pilot projects at

demonstrator sites will focus on aspects of education and training, eg self

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needling, the potential of simulation learning. They will also explore patient

experience in more depth; this is a very important dimension and largely

absent from this consultation; both because of time constraints and because

the brief focused on staff perspective.

There appears to be good liaison and relationships with local branches of the

Kidney Patients Association (KPA) in some Centres. However this is variable

across the region and we did not gain a sense that the KPA was influencing

service delivery or modality options to any great extent. In Renal Centres, the

opportunity for developing greater involvement and influence by patients and

carers may best evolve though the development of patient and carer

champions. Such models of peer support and education have been shown to

be powerful and cost effective, but they do need organisation and reliable,

consistent, efficient administration and support. The time and resource

needed to develop effective patient and carer involvement is frequently

underestimated (Gutteridge and Dobbins 2010)

6.1.3 Patient flow as a process

In the light of comments from interviewees, Figure 5.2 was modified to Figure

6.2 below. The patient flow diagram from a Renal Centre included specific

staff such as the „access coordinator‟ and trigger points e.g. at GFR = 15

create fistula if haemodialysis has been chosen. For simplicity, these

important points have been left out of our diagram as they do not alter the

„flow‟.

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Figure 6.2: Suggested patient flow diagram

1) Known patient

6) Permanent access (fistula

or PD)

7) Peritoneal dialysis• CAPD• APD• Assisted PD

3) Transplant

4) Conservative

care

Reassess treatment options (can

go to 3), 4), 5), 7), 8), 9) or 10)

2) Unknown patient

5) Emergency access

(Line or PD) 9)Unit based HD: Self-care

End of Life Care Death (paths from everywhere)

8) Unit-based haemodialysis: conventional

10) Home haemodialysis• Conventional• Enhanced frequency• Nocturnal

Ideally, patients are known (1) to the renal Centre for more than 90 days

before dialysis commences; therapy options are discussed with them (green

line from 1 to 6), permanent access is established for either PD or

haemodialysis before dialysis commences. The other green line, from 2 to 6

was mentioned by one Centre, whereby unknown patients (2) are given rapid

pre-dialysis education. The „unplanned‟ starts are indicated by the black lines,

so although therapy options may have been discussed, dialysis needs to start

before a permanent access has been established.

The following are of great relevance to the care of patients but are not directly

related to the CQUIN target:

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The time patients are known (1). One Centre is proud that their pre-

dialysis education arrests the fall in GFR of many patients

The proportion of patients who receive a transplant (3)

The proportion of patients who opt for conservative care (4)

These data are not currently included in the 35% CQUIN although there is

some concern about the tension between meeting the CQUIN and desirability

of transplants. This illustrates the potential for tensions to arise between the

desire to achieve the CQUIN target by making clinical decisions which may

not take full account of patient choice or best interests. The CQUIN relates to

the proportion of dialysis patients on PD (7), home haemodialysis (10) and

unit based self care (9).

As outside observers, it was surprising how little self-care and minimal care

there was within hospital centres. In contrast, great emphasis was placed on

maximising the proportion of patients who are known (1) and who never need

emergency access i.e. go on the green line from 1) to 6). This is regarded as

one of the best ways to encourage home dialysis, and generally is being

monitored carefully. Those who are given emergency central catheters (lines)

are most likely to remain on haemodialysis in hospital; therefore reducing the

number of patients on the black lines (1 to 5 and 2 to 5) is important. One

Centre is using emergency assisted PD to encourage these unplanned

patients to undertake home dialysis.

For efficiency, Centres would value a single set of returns for all monitoring purposes. One physician interviewee commented that understanding patient flow as a

process would be helpful:

moves away from this idea that it‟ s all the patient‟s fault

This related to the tendency for health professionals to see each patient as an

individual special case at the expense of creating patient pathways that work

for the majority To this end, dissemination of best practice regarding data

collection methods and use of patient tracking would be beneficial.

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6.1.4 Flexible delivery models of RRT

There appears to be real potential to promote home therapies by

incorporating and expanding information about flexible models of dialysis into

pre-dialysis education. More staff education may be indicated to build

knowledge and confidence in the feasibility and risk management of these

models. Shorter, more frequent daytime sessions and nocturnal dialysis are

identified advantages of home therapies but if there were more training

spaces and minimal care facilities in Centres, some staff spoke about the

possibilities of using more flexible delivery models in Centre based dialysis to

encourage and facilitate the transition to home therapies. Moreover, some

Centres were interested in the possibilities arising from introducing a wider

range of assisted and minimal care dialysis. Although Assisted dialysis

seems at present to be largely linked to PD and minimal care to HD, it is

possible that any of the modalities of RRT could be delivered with assistance

or minimal care in both home and Centre based locations.

As external observers, it was interesting to note the enthusiasm with which

these ideas were received in Centres who had not considered them. This

illustrates how tradition and culture may occasionally hinder innovation and

highlights the benefits of cross centre sharing and collaboration. Once the

idea was shared, during initial visits, there was consensus that encouraging

all patients to undertake self-care would facilitate the transition to home and,

perhaps more importantly, facilitate greater patient involvement in their care,

stimulating a culture change from „care‟ to „training‟.

6.1.5 Collaboration, Competition and Commissioning

Concerns were expressed both that resources allocated nationally, regionally

and locally to individual Centres would be insufficient to support the desired

developments in Renal Services, and that allocation of resources may not be

equitable between Centres.

The West Midlands commissioning climate, relationships with the SCT and

function of the WRMRN may be illustrated by perceptions of the

commissioning specification and CQUIN (see below).

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However, if collaboration was the norm, it may be possible to take a region

wide strategic view, designating individual Centres of Excellence with a

responsibility for sharing their expertise to support other Centres in identified

aspects of service development.

Sharing and pooling of resources may also be encouraged though increased

collaboration between Centres; this may help make more effective and

efficient use of limited resources, as well as contributing to current local NHS

Trust Cost Improvement Programmes (CIP) Quality Innovation, Productivity

and Prevention (QUIPP) and integration agenda.

6.1.6 Working Effectively with Commissioners

Concerns expressed during initial visits appeared to be uncertainty

(amounting in some staff to real unease) about the way the commissioning

specification is being negotiated and developed and some loss of confidence

in the WMRN as a neutral body. However much they may be based on

perception, these concerns have a negative impact on the way resources are

allocated and the overall strategy for situating and supporting Centres

Inarguably the SCT and WMRN have made strenuous efforts to consult.

Equally inarguable, this consultation is not universally perceived as sufficient,

appropriate or adequately responsive. Additionally, aims of the commissioning

specification and the terms of the CQUIN appear not to be perceived or

understood in the same way by everyone.

It is possible that greater ownership and engagement may be achieved if the

following suggestions are considered:

Ensure the commissioning specification is not perceived as a set of

clinical guidelines but is accepted as the basis for a contract that drives

quality assurance and enhancement

Engage Renal Centre staff in devising the quality and contract

monitoring measures in the commissioning specification

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Incorporate into the commissioning specification some of the service

developments to help Renal Centre staff construct their local business

cases. For example, there was consensus that Centres employing a

specialist social worker and counselling or clinical psychologist as part

of the interdisciplinary team offered a better service to patients, carers

and support to staff. There was felt to be greater efficiency,

effectiveness and better outcomes which made the investment in these

staff very worthwhile

Clarify any conflicts of interest inherent in the WMRN dual function as

advisory to the commissioners and monitoring quality

Offer a programme of support, mentorship and staff development

training to Renal Centre staff who need or wish to develop business

related skills. For example a number of staff identified a need to feel

more confident about their abilities to write effective business cases to

assist negotiation for resources nationally, regionally and locally

6.1.7 The impact of the CQUIN

The seven Renal Centres across the West Midlands are actively focussed on

increasing the percentage of dialysis patients undertaking it at home. This fact

(and the increases in the actual percentages on home therapies) suggest that

the CQUIN is having the desired effect and there was general optimism about

reaching this target.

The commitment of the Renal Centres to achieving the CQUIN target was

evident. However, there are risks arising from the following factors:

Although the current uptake, particularly of home haemodialysis

remains low, judgements based on current figures may underplay the

potential for Renal Centres to continue organising themselves for

greater uptake of home therapies in the next few years

Given the short time patients may stay on home dialysis, more patients

need to be recruited just to maintain the same percentage as the

numbers increase

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Much of the increase in home therapies seems to be due to huge (even

heroic) effort by staff. This does not seem to be sustainable, and more

efficient process and systems (and greater dedicated resources) may

need to be established

Modification of the CQUIN target may not be appropriate at this stage.

However, there are a number of actions that could be considered by Renal

Centres and/ or the Specialist Commissioners:

Undertake more frequent discussion between individual Centres and

the commissioners so that there is greater shared understanding of the

issues and potential solutions

Patient flow data: disseminate best practice from those Centres with

well established systems. This relates to what data are collected, how

they are collected and how they are used

All Centres report data to the Specialist Commissioners regarding type

of access and dialysis modality. These figures could be published

regularly to promote „friendly competition‟ and cross-centre discussion

Region-wide consideration of the effectiveness of the initiatives

undertaken in the Centres

Clarify any lack of understanding about whether PD is included in the

CQUIN target

Consider how Centres with successful transplant programmes may be

rewarded. Centres may not achieve their CQUIN target because their

very successful transplant programmes mean that fewer numbers ever

need dialysis. At present there are concerns that the CQUIN target

does not support this type of good practice, instead, tending to lead

towards clinical decisions that may not be in the best interests of the

patient

Similarly, consider how Centres who are effective in achieving lifestyle

and behaviour change may be rewarded. Successful patient

education, conservative management and excellent liaison with

Primary Care may result in fewer patients requiring RRT

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Promote a shift to home therapies as the default position by working

collaboratively to devise a protocol or checklist to justify why home

therapies are not being offered

6.2 Factors Related to Human Behaviour

Mitra (2011) identified behaviour change in both patients and in staff as one of

the primary challenges in moving towards a position where home therapies

are the norm. He suggests that supporting behaviour change in staff is both

the most influential shift and the most difficult to achieve. The human factors

identified from the initial visits and follow-up interviews are discussed in more

detail in Section 7. Mindful that clinicians tend overwhelmingly to be

dedicated, committed and highly expert practitioners, it is imperative to

approach suggestions that behaviour might be a barrier with great care and

sensitivity and in a way that feels developmental rather than punitive or

destructively critical. All the clinicians encountered during this work were

experienced by the WMC-HIEC team as utterly committed and routinely

„going the extra mile‟ every day in their efforts continuously to deliver and

develop care of the highest quality.

6.2.1 Psychological impact of moving dialysis closer to home

There is clearly a psychological impact and a range of factors influencing

successful transition to home therapies were discussed in Section 3.

However, the experiences of staff participating in this consultation suggest

this transition may be no greater than that encountered with a diagnosis of

CKD or recognition of the need for RRT. Any point of transition is stressful;

human beings tend not to like change, individual resources (knowledge,

confidence) tend to be lowest and the need for support is consequently

greater. More work will be needed to explore patient and carer views about

the psychological impact of transition to home therapies. This will be

achieved through one of the Demonstrator site projects which involve a

number of patient focus groups and will particularly explore the experiences of

South Asian people. As identified in Section 3, factors related to ethnicity are

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not well understood and South Asian people appear to be under-represented

in Renal Services in the West Midlands.

It is difficult to separate out human behaviour and organisational factors or

systems as these are inter-subjectively linked in their impact on the uptake of

home therapies. The interrelationship between organisations as social

systems may be more usefully considered at their dynamic interface; the

underlying culture.

6.2.2 Culture

From the initial visits and in the interviews staff identified that it was

desirable to move the culture to a position where home therapies are the

default modality of choice with alternatives considered only where there are

compelling clinical, social or psychological factors, or when an individual

patient exercises informed choice. It was perceived to be necessary to „get

everyone singing from the same song sheet „, i.e. share common values and

adopt consistent behaviours about (for example) pre-dialysis education.

There was a perception that such a shift would increase consistency of

communication about modality choice, improve lifestyle management of CKD

and achieve a higher level of quality in pre-dialysis education through

integrated approaches and consistent messages by all staff. This may help

stimulate an increasing flow of patients interested in home therapies.

Defining „culture‟ is extremely problematic. According to a longstanding but

still valid definition:

Culture has been defined in a number of ways, but most simply, as the learned and shared behavior of a community of interacting human beings (Useem and Useem 1963:169 ).

For the purposes of this report (adapted from Lederach 1995:9) culture is

defined as: the attitudes, beliefs, symbolic representations and learning which

influence perception and behaviour in individuals, organisations and whole

social systems. The crucial points about culture are:

Culture is expressed in individual behaviour

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Every aspect of social and self identity influences every aspect of

individual behaviour

Every individual has a unique mix of encultured learning which explains

their unique take on the world

Every individual is part of a multi-layered social system with particular

traditions, norms and biases

Such individual differences can be helpful if they lead to constructive and

robust debate. They are only problematic if they begin to hinder aspects of

quality or service development. Barriers arising from individual differences

were not explored in depth for this report. However, if Centre teams are

aware of patients, carers or clinicians exhibiting unusual or inexplicable

resistance, reluctance, poor adherence or dissonant efforts to dismiss

evidence or „ the facts‟ cultural issues may be a factor. Accepting and being

curious about exploring these issues can help explain and resolve differences

which might otherwise result in conflict or hinder collaboration and co-

operation between clinician and patient, or between inter-professional groups.

Achieving such acceptance can be more difficult because this can challenge

sincerely held beliefs and well- motivated behaviours.

There is already a clear focus and intention to increase the uptake of home

therapies, particularly amongst the lead staff who took part in this

consultation. The commitment and motivation from nurses, doctors and

technicians closely involved in home therapies was impressive. Indeed,

although not explicitly stated by Centres, the number of initiatives and pace of

change in some Centres could risk „burnout‟ from some of the staff leading the

home therapy change process. Changes need to be sustainable and

embedded. In addition, a culture shift requires behaviour change at all levels

of the system, including changes in clinician, patient and organisational

perception and behaviour. Fully embedded and integrated cultural change

may also require changes in commissioning behaviour and DoH policy. Some

aspects of culture have already been discussed above but it is important to

consider how factors are inter-subjectively connected so that change in one

area may dynamically influence other aspects of the overall culture.

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The macro-level of this dynamic inter-relationship is considered, below, using

Porter‟s Five Forces model (Figure 6.3). Some suggestions for addressing

the individual micro and meso- level factors are discussed in Section 7, where

some ideas for possible staff development and education are presented.

Shared staff development can act as a vehicle for knowledge exchange and

stimulating culture change either at local level, or through greater sharing and

collaboration and more effective inter-professional working within and

between Centres. This itself may constitute a cultural shift towards

collaboration rather than competition, as well as illustrating the multiple layers

of‟ culture‟.

6.2.3 Staff and patient education and training Mitra (2011) argues that loss of patient confidence is the single most

influential factor in the failure of a home therapies programme. As

highlighted in Section 5, several of the nurses highlighted their anxiety about

ensuring patients feel confident about home therapies before going home,

else risk attrition back to in-centre dialysis. Concerns expressed about

insufficient training space and staffing to support the required amount of

patient education and training were apparent in the consultation, particularly in

the interviews with the lead nurses. Similarly, from interviews with renal

technicians, the reliability of the technology to retain the confidence of patients

was highlighted. Felt to be of over-riding importance is the requirement for a

home delivery system to be highly reliable and any problems need to be

sorted out speedily. Mitra (2011) says that patient confidence in the entire

system is paramount; not merely the kit and technical aspects but patients

need to have confidence in the psychological support and education available,

prompt response to queries and problems, and a sound working alliance with

the staff at their Centre. Again, this affirms both the literature in Section 3, the

views of the staff consulted and highlights the potential value of patient

champions and peer mentors. Nurses and technicians described working

long hours to realise their commitment to ensuring a prompt response to

queries and problems in patients undertaking home therapy. However staff

will always have a limited capacity to be available or to respond. As numbers

grow, it may not be cost effective for staff always to deliver pre-dialysis

education and training. Patients, carers and their representative

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organisations could potentially support this evolutionary process to good

effect.

6.2.4 Role of Simulation in cost effective education and training

As a tool for education of staff, patients and carers, simulation has

considerable potential which could be further exploited. Although simulation

was not discussed with NHS staff in the course of this consultation, it

nonetheless has significant potential to be developed in the context of CKD in

the West Midlands (Beavan 2011).

Simulation has been used for many years in medical education, in the form of

simulated patients and mannequins. In recent years, virtual reality (eg

Second Life and haptics3 ) have also been used and together with more

traditional methods, provide a bridge between pure theory and practice on

consenting patients. This is as important for the experienced clinician

preparing to perform a new and complex procedure as it is for the medical

student, carer or patient learning to carry out a basic clinical task (Beavan

2011).

A summary review of the literature by Davison (2011) suggested that the use

of simulation in CKD is limited at present. There was evidence of use in

teaching clinical procedures such as central venous catheterisation (CVC)

and staff education using online materials. Procedural skills were mainly

concerned with physical and virtual reality simulators, but some used online

videos, games or other materials. There was one example of online

mentoring. Finally, in some instances simulation technology was used to

analyse patient flow, provide alerts to potential medication errors and for

remote monitoring.

Incorporated in the discussion below are some hyperlinks to a range of

examples showing how simulation has been used to enhance safety, quality

3 Haptics is a branch of simulation technology which harnesses the sense of touch. Haptic suits or

gloves linked to computer technology are sued to give the learner feedback about their motor skills

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or cost effectiveness. These ideas are eminently transferable to CKD

services and Home Therapies programmes (Beavan 2011).

Simulated patients, either as e-patient stories (eg

http://www.healthtalkonline.org/) or trained lay actors are used in practically all

undergraduate courses for the health professions. The Interactive Studies

Unit at the University of Birmingham uses role players with medical and dental

students, doctors in difficulty and a range of post-registration health

professionals (www.isu.bham.ac.uk). However, simulation can also be

extremely helpful in learning the softer or more human focused skills such as

communication.

There are examples of simulated patients being used to train health

professionals to communicate effectively with patients with long term

conditions such as heart failure and cancer for which there are intensive

3-day courses for senior cancer clinicians (http://www.connected.nhs.uk).

Practitioners are encouraged to bring challenging scenarios from their own

experience and work through them with a professional actor who will follow

the brief for a patient or relative.

Second Life has been used successfully in a number of ways in health care

education. A bereavement course for nurses has been developed in

Birmingham by Maggie Griffiths and Dawn Chaplin at the Queen Elizabeth

Hospital Birmingham, using virtual reality and avatars to introduce clinicians to

what might be a new and potentially worrying communication transaction.

Many other examples of Second Life for health care can be found on the

Internet, including a programme that teaches medical students to recognise

heart arrhythmias (http://scienceroll.com/2007/06/17/top-10-virtual-medical-

sites-in-second-life/).

Keele University has developed a “virtual ward” and ways of importing data

from a real patient into a virtual patient so that surgical teams can plan

operations. (http://www.bbc.co.uk/news/uk-england-stoke-staffordshire-

14392477) Again this is a concept that can be developed for patients with

85

long term conditions, such as those on renal dialysis, who need to become

familiar with medical equipment and procedures.

For simple information giving, there are some examples of simulation used for

patient education in CKD. See for example

http://www.kidneypatientguide.org.uk/site/HD.php

According to Kneebone and Agarwal (2009) simulation should be viewed as:

a parallel universe which mirrors and augments actual practice; it should

place the learner at the Centre of the process while ensuring patients do not

experience avoidable harm. Mapping the dynamic association between the

virtual reality Centre, the simulated operating suite, and the real environment

should become a priority for researchers and healthcare professionals

6.2.5 Sharing and dissemination of best practice

The WMC-HIEC-CKD stakeholder seminar on 6th September was well

received by NHS staff participating and further opportunities for Renal Centres

to come together in a learning environment should be encouraged. Moreover,

there was huge enthusiasm from the nurses interviewed to attend the home

therapies conference in Manchester in September 2011. This provides

evidence that home therapies staff could be facilitated to further share

knowledge and increase communication. The following topics may all act as

useful vehicles to promote discussion:

Best practice education for patients, carers and staff

Flexible delivery models

Ideas to catalyse and integrate speedy service development and

efficient use of resources

Models of service user engagement and involvement

Workforce planning and the optimal skills mix for delivery of home

therapies.

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The workforce skills mix which may be optimal for promoting and sustaining

the growth of home therapies was not explored during the consultation for

this report and has been identified as an area for further work by the WMC-

HIEC team.

In addition, interdisciplinary sharing within and between Centres can assist

reflexivity and shift in individual beliefs or behaviours which may sustain

unhelpful dissonance arising from cultural differences.

6.3 The Potential of Technology to support and catalyse

uptake of home therapies

Advances in technology will aid the uptake of home haemodialysis. These

must however act as an adjunct to changes in service delivery and culture,

only then will the full potential advantages offered by technology be fully

realised.

Moreover, from the renal technicians interviewed, it was emphasised that

haemodialysis equipment for CKD would merit from an independent review,

so that a thorough fair assessment of the healthcare and economic aspects of

different systems could be compared. Clearly, the new portable equipment

(such as NxStage) attracts interest but critical, comparative and independent

review would be valued by those in the workplace.

The NHS has been described as a „late and slow adopter of new technology‟

although the role of innovative medical devices and health technologies in

improving healthcare is recognised. The uptake and adoption of medical

devices in the NHS is affected by several issues including: commissioning,

procurement, reimbursement, regulatory issues, political issues, innovation

awareness, the evidence-base; the patients‟, manufacturers‟ and healthcare

professionals‟ perspectives, training, funding and final adoption. Often the

actual „technology‟ is not the most significant barrier and uptake is

complicated by issues such as inertia, lack of; commitment, correct and timely

education, investment, or that there are no appropriate tariffs in place.

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Patient-centred design is already an important part of medical device design,

although often primarily centred around very large markets such the USA,

Europe and Japan as the UK is a rather small, often difficult market for

medical devices to penetrate. This should not however prevent healthcare

professionals, patients or carers interacting with manufacturers in attempts to

become more fully involved in the design of new technology to support care at

home. Dialogue can occur directly with manufacturers or via organisations

such as NHS Innovation Hubs or HIECs.

Horizon scanning reveals that miniaturisation of both haemodialysis and

peritoneal dialysis equipment is an important area of industry research and

development. This can involve portable instruments a little smaller than

conventional current haemodialysis equipment, and much smaller systems

sometimes referred to as „wearable artificial kidneys‟. Such systems are likely

to have moderate financial and moderate process impacts.

Companies reported to be developing compact, portable dialysis systems that

patients could wear include;

AWAK Technologies Pte Ltd (http://www.awak.com/wearable_dialysis.htm) ,

Xcorporeal Inc, Nanodialysis BV (http://www.nanodialysis.nl) , Renal Solutions

Inc and Innovative Biotherapies

Interestingly several of these have now become wholly owned subsidiaries of

Fresenius Medical Care a major international company, currently a market

leader in supplying conventional unit- and home-based haemodialysis

instrumentation.

Innovations more likely to have an immediate impact on current home

haemodialysis are portable systems, which are smaller than conventional

equipment and already commercially available. These include the NxStage

system (http://www.nxstage.com) available from Kimal, and the Selfcare+

system (http://quantafs.com) from Quanta. Both manufactures have

interacted with patients, healthcare professionals and organisations such as

Devices for Dignity to finalise design specifications. Indeed, some of this

valued activity was picked up in the interviews with nurses as part of the

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follow-up interviews. As the companies are based in Bromsgrove/Droitwich

and Alcester respectively, this offers an exciting potential opportunity for

interaction with the WMC- HIEC and Renal Centres in the West Midlands

region. Discussions could cover technological, logistic, economic and service

delivery research.

Although acknowledging that technology is secondary to changes needed in

culture and service delivery, and just one aspect of overcoming barriers,

healthcare professionals from units with a large percentage of patients on

home haemodialysis have provided characteristics home haemodialysis

equipment should ideally possess.

These include the following features or abilities:

The machine should do all the work, eg sanitise itself by heat

Interact in teaching the user

The dialyser and blood tubing set should be part of the machine

Improved reliability to increase patient confidence

Supply water of ultrapure quality

Require no systematic anticoagulation

Incorporate a „rescue‟ feature and allow interaction with a rapid

intravenous fluid system

Offer a flexible menu of treatment options, short, daily, nocturnal, high

volume etc

Such features provide a basis for discussions with manufacturers regarding

current and future equipment. However it must still be borne in mind that

home haemodialysis may fail due to vein access problems or if the patient

can‟t handle self needling issues. This was outlined as a potential patient

barrier in the interviews with NHS staff, and subsequently, this is the focus of

a stream of work with the Demonstrator Sites which is ongoing with HIEC

staff.

In common with other long term, home based conditions; the adoption or

adaptation of new or existing technologies can play a very important role in

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supporting the uptake and effective delivery of home therapies. Existing

technologies for remote monitoring, reminders, mobile phones, smart devices

etc all may play a role in facilitating the uptake of home haemodialysis and

flexibly fitting it into the patient‟s lifestyle.

6.4. A Macro-Perspective on Delivering an Increased Uptake

of Home Therapies

At the macro level of the delivery system, the Regional Commissioner has

opportunities to drive service development by agreeing a coherent, integrated

regional strategy and implementation plan that all Centres work collectively

towards.

From this perspective, there is evidence that the CQUIN is acting as a catalyst

to stimulate service change and a greater focus on home therapies.

Nevertheless, individual perceptions lead to this being interpreted very

differently: ranging from a welcome force for change, through to

inappropriate involvement in clinical decision making .

Given the different views and perceptions of each Renal Centre and the

complexity of the issues surrounding an intention to increase the uptake of

home therapies, Porter‟s Five Forces of Position model (1980, 1985) is used

to identify areas where the WMRN, SCT and Renal Centres might work

fruitfully together to achieve their shared objectives.

Porter‟s model (1980) assists analysis of complex and interacting factors

which may influence a market, in order to make a strategic assessment of the

competing forces in a given market context. Adapted for a commissioning

culture, the five forces that Porter‟s model suggests drive competition and

service development are:

1. Competitive rivalry between Renal Centres

2. New entrants to uptake of Home Therapies

3. Power of Providers

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4. Power of Commissioners

5. Impact of technology change

An adapted Porter‟s model is used to provide a framework for the main

factors affecting the take up of home therapies. The arrows and square

blocks summarise the relationships and factors already influencing service

provision; coloured rounded blocks indicate potential opportunities for further

collaborations for speedier or more cost effective service development.

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Figure 6.3: Porter’s Five Forces model applied to the systemic factors influencing take up of home therapies.

Competitive rivalry between Centres

resources available

number and size

clinical strategy variations

product/service variations

workforce variables eg

attitudes, practices

collaboration versus competition

Commissioner Power

choice of provider

cost / volume

price

nature of contract

quality and contract monitoring indicators

benchmarking

providing resources

Technology

Technology development

Kit alternatives price/quality

market distribution changes

fashion and trends legislative effects

Provider Power

reputation

geographical coverage

product/service quality

relationships with stakeholders

bidding capabilities

resources obtained

New Home therapies Entrants

entry ease/barriers

geographical factors

lifestyle factors

symptoms control

resistance to change

individual preference

availability of choice

Partnerships for

quality, innovation

productivity &

prevention (QUIPP)

Integrated

education &

workforce

planning

Stronger Service

User: Voice and

Involvement

Shared resource

development

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The advantage of a dynamic model is that it reinforces the notion that

changing any one factor has potential to impact on all other factors.

Viewing the inter-subjective forces as a whole system also makes it easier to

conceptualise the potential for a new or innovative initiative to impact on

individual parts or the whole system and to improve productivity, efficiency or

to reduce costs in the system. Current NHS cost improvement targets (CIP)

and the Quality, Innovation, Productivity and Prevention (QUIPP) agenda are

likely to make this type of systemic ,integrated planning higher priority,

particularly given the clustering arrangements for commissioning.

In Figure 6.3, the coloured ovals indicate potential opportunities for new

collaborations for speedier service development

Exemplified by the work of the WMC-HIEC with Renal Centres, the following

changes could individually or cumulatively impact on the whole system:

More effective shared working between Centres

Closer liaison with Clinical Science and Technology development

Development of a stronger patient voice and patient involvement in

education and service design

a more coherent approach to staff training and education especially:

a. integration between undergraduate and CPD curricula

b. integration between inter-professional curricula

c. evaluation of workplace initiatives to determine „what works‟ in

terms of staff development for home therapy teams

Closer working with research, academia and industry to develop

resources (kit, training and education) to evaluate the impact of new

resources and innovations and to help embed these speedily in

practice.

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6.5 Conclusion

Section 6 has presented an analytic commentary from the consultation with

Renal Centres. A number of opportunities for increasing the uptake of home

therapies have been discussed. As a potential barrier, availability of

resources appears to be the main concern of staff. In the next Section, this

commentary is drawn together with some concluding suggestions for future

work.

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Section 7. Conclusions and recommendations for

further work

7.1 Introduction

According to Mitra (2011) the health benefits of home dialysis are inarguable,

partly because home treatments support consistently optimal treatment times

and flexible dialysis. Lower morbidity and mortality, better symptom control,

shorter recovery times, increased energy and more effective function in all

bodily systems have been demonstrated. Meanwhile, feeling better and

functioning more fully tends to enhance psychological and social health and

wellbeing. Other research supports the benefit to health of more frequent

delivery (e.g. Kjellestrand et al 2008, Bayliss and Danziger 2009, Pauly et al

2009, Rutkowski and Rychlik 2011). However, Rutkowski and Rychlik (2011)

identify that more frequent dialysis can increase kin- caregiver burden and

home based dialysis, especially if more frequent, may impact on family life,

intimate relationships and citizenship for some patients. Nevertheless, while

it seems to be agreed that transplantation is the treatment of choice, there is

substantial evidence that long nocturnal dialysis and more frequent night time

or day time dialysis lead to better health outcomes than Centre based thrice

weekly traditional delivery models.

For these reasons, using the commissioning specification and CQUIN to drive

service development towards home therapies appears a sound rationale and

all Centres demonstrated that they are signed up to the importance of this

agenda. However the actual target of 35% over 5 years appears arbitrary.

Although the health benefits are inarguable the economic case is less clear.

Mitra (2011) points out that at present the numbers of patients using home

haemodialysis is insufficient to know where the tipping point will occur where

economic and health benefits may no longer justify the investment in home

therapy for an individual. More longitudinal and cohort studies are needed to

establish the optimal balance of access, quality and cost. Mitra (2011)

suggests there are likely to be substantial numbers of individuals where the

complexity, intensity, instability or nature of their ESRD and other co-existing

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conditions will render home treatment uneconomic or socially and

psychologically too risky. Some patients will also exercise their choice to

select a modality that is not clinically indicated or ideal. However, until more

patients are undertaking home haemodialysis or the various forms of PD, and

there is more experience e of assisted models of care, or peer supported

dialysis, these questions cannot be debated effectively. More work is needed

by the Renal Community of Practice to explore the health, social and

economic aspects of investing in home therapies, appropriate ways to

incentivise and embed best practice. More understanding is needed about the

dynamic relationships between factors identified in Figure 6.3 and there is a

need for more robust and comprehensive evidence to underpin these

debates.

7.2 Home environments Technology and home environment were not perceived as major barriers.

However, patient feedback at the WMC-HIEC CKD Stakeholder seminar

indicated that gaining permission for necessary adaptations in the home,

however minor, may be an almost insuperable barrier for patients living in

rented accommodation or communal settings. More work would be required

to understand the experiences underlying this comment.

7.3 Patient and carer: experience and involvement Patient experience and patient involvement have both been identified as

needing further work.

More exploration of patient and carer experiences and views about the

psychological impact of transition to home therapies is needed to gather a full

picture of the challenges and opportunities of increasing the uptake of home

therapies. Patient experience will be explored through one of the

Demonstrator site projects. This involves a number of patient focus groups

and will particularly explore the experiences of South Asian people. The

Service Improvement workstream of the WMC-HIEC will also involve

observation of processes and interaction at CKD clinics. This is expected to

increase understanding of aspects such as the impact of culture and

communication variables in decision making.

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Although not a Demonstrator site project, this report identifies the potential

role of peer mentors and patient champions in promoting the uptake of home

therapies. This has been discussed in Sections 5 and 6. The WMC-HIEC

CKD team have identified models of patient involvement as an area for further

exploration in the next phase of their work if resources allow.

7.4 Workforce skills mix

The workforce skills mix which may be optimal for promoting and sustaining

the growth of home therapies was not explored during the consultation for

this report and has been identified as an area for further work by the WMC-

HIEC team.

7.5 Communication for sharing and dissemination of best practice

The aim of shared learning and collaborative service development is to

increase access quality and safety and to decrease price across the entire

system; preferably to influence all three inter-subjective factors so that the

collective impact is greater than any single factor individually could achieve.

A number of ideas have been considered in the discussion in Section 6. An

area for further development appears to be the potential for interdisciplinary

sharing and learning. In particular, it has already been emphasised that

individual team members of the home therapy service in each Centre

demonstrated huge commitment and effort towards generating new initiatives

to expand the service. Recognising these individual skills and activities is

important, and it is our view that the many successes should be celebrated

and disseminated (for example, low infection rates, patient education,

effective patient tracking, and many other initiatives). This sharing could

usefully be done within Centres as well as across Centres.

Although the WMRN and WMRN Nurses Forum already presented some

opportunities for information and ideas sharing, none of the existing groups

had an interdisciplinary focus, nor included patients. Promoting

interdisciplinary discussion is a primary aim for the remaining WMC-HIEC

CKD seminars, to follow the event on 6th September 2011. These seminars

seek the involvement of patients, carers and representatives from the West

Midlands branches of the Kidney Patients Association, as well as academics,

97

researchers, clinicians, industry representatives and renal technologists. A

programme and summary evaluation of the successful first meeting held on

6th September 2011 are included in Appendices 7 and 8. The SCT/WMRN

may wish to consider the value of continuing this type of knowledge exchange

forum.

7.6 Staff development and patient education as vehicles for culture

change

The challenges of culture change have been discussed in Section 6.

Although not a primary barrier identified from this consultation, there were

indications some clinicians would like more confidence that these factors are

not creating unintentional barriers, as suggested by research (e.g. DoH

2004a, Villarba and Warr 2004, Zhang et al 2010, Mitra 2011).

At a micro-level, where individual behaviours may present a barrier to change,

directly challenging these individual beliefs may be more likely to generate

greater resistance and reluctance rather than the desired behaviour change.

Such resistance may arise from a number of sources e.g. fear of change,

tradition, inertia or genuine concern about the quality of the evidence. Work

Based learning could present opportunities to challenge individual behaviours

in developmental and non-critical ways. For example, as there were

suggestions in this consultation project that some other staff (who were not

interviewed) may not be as positive about the shift towards home therapies,

all renal staff should have some exposure to the home therapies programme

to dispel myths and experience the service.

More formal staff development opportunities can be particularly helpful if they

are interdisciplinary events including patients and carers as equal participants.

Most individuals are well-intentioned and capable of reflexivity if they feel safe

and valued.

As discussed in Section 6, cultural context impacts on an individual‟s unique

view of the world and how their individual life story is constructed (Hedges

2005) and this is a principle that can be applied to shared decision making.

The GRRAACCEES (Burnham 1992, 1993, 2008) is an acronym devised by

Roper Hall (1993, 1998, 2008), encouraging health professionals to consider

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the impact of individual differences and to become more reflexive about their

own beliefs. This acronym highlights that gender, race, religion, age, ability,

class, cultural traditions, ethnicity, education, employment, sexuality and

spirituality are all variables exerting influence at micro-, meso- and macro-

levels of human interaction. Burnham et al (2008) describe how explicit

attention to these differences can enrich and enhance therapeutic

relationships and assist helpers to achieve better outcomes.

7.6.1 Culture and shared decision making

There is a large and long standing literature about shared decision making (eg

Charles et al 1997, Charles et al 2006, Loh et al 2007, Legare et al 2008,

Street et al 2008, Chewning et al 2010, Stacey et al 2010, Scholl et al 2011,

Van den Brink-Muinen et al 2011), but despite tools, models and research,

there remains no perfect prescription.

From the initial visits, shared decision making appeared to be an area where

some staff felt somewhat unconfident that excellence is consistently achieved

by all involved. Research has identified that medically trained clinicians may

not always feel as knowledgeable about the sociological and psychological

theories which underpin effective communication for shared decision making

(eg Street al 2009, Uitterhoeve et al 2008, Sandberg and Sandberg 2009,

Sandhu et al 2009)

However, this is a difficult balance to manage. Current policy and practice

emphasises client-centred choice and decision making yet this can leave a

clinician uncertain how to contribute their expertise without leading or overly

influencing the process. In any transaction, there will be individual differences

of interpretation and experience which can be challenging and disruptive even

in individuals from the same social or racial community. Cronen (1990) and

Cronen and Pearce (1991) explain how the meaning and impact of a word or

phrase depends on the context in which it occurs and how individually

constructed meaning is woven into inter-personal communications at every

level. Rather than seeking to determine right and wrong, it can be helpful to

consider these tensions as encultured differences and to focus instead on

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adapting the communication approach so it matches the purpose of the

transaction (Hedges 2005).

7.6.2 Tasks in the shared decision making discussion

Edelmann (2000) says that instrumental and socio emotional tasks are the

two primary tasks in any therapeutic communication. Attention to both is

necessary for a successful consultation. However, the balance of each varies

both within the consultation and depending on the unique combination of

clinician and patient characteristics and status at any particular moment in

time. Some (especially cultural) factors will remain unconscious and

unspoken but exert a powerful influence. For example, research has shown

that hierarchies, balance of power and learned behaviours about stigmatised

illness behaviours may all exert hidden influence on communication. Such

influences may preclude open discussion about disruptive symptoms even

where this would be helpful to choice of modality (Hedges 2005, Hertlein et al

2009 Newton 2010a,b).

7.6.3 The complexities of decision making in the moment

Coget (2010) talks about the Critical Decision Vortex, articulating a model to

explain how rational decision making, intuitive decision making and emotion

influence each other in the moment by moment shifts of a consultation. Coget

argues that in order to be effective, clinicians need to be equally attentive to

their analytical conclusions, the intuitive hunches that come with experience

and to remain open and attentive to their emotions.

Therefore much remains dependent on the skills of the clinician in adapting

their communication to meet the needs of the patient at any one moment in

time. This is an extremely challenging enterprise, but one which is explicit in

many professional ethical codes of conduct. Many of the communication

skills and expertise will be present in abundance in the staff and patients. It

may be helpful to consider interdisciplinary learning as opportunities to

support each other to build confidence that everyone is using the principles of

adaptable, flexible and culturally competent communication.

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7.6.4 Building confidence and adaptability in shared decision making

Information giving involves transmission of new information and correcting

misinformation (Lobb et al 2004). Information giving is one type of

communication skill and the quality of communication is an important

determination of the impact of any healing intervention (Street et al 2009).

When communication skills are used effectively, problems are identified more

accurately, clients are more likely to adhere to treatment, to follow advice

about behavioural change and satisfaction is greater for both client and

practitioner and overall treatment outcomes are better. (Maguire and

Pitceathly 2002, Lobb et al 2004). However, part of building confidence in

patients intending to receive home therapy requires that a suitable training

environment and sufficient staff resource is available. A key finding of this

consultation was that in some Centres there was dissatisfaction with the

physical environment and resource capacity required to support a speedier

increase in home therapies. It is important that these concerns are taken

seriously, so that staff can feel confident that they will be able to prepare

patients effectively and meet their needs.

Some ideas for CPD and training events are proposed in the following

section. These could be used as the basis for inter-professional learning

events within Centres and for shared CPD across Centres to build

consistency of practice Psychological theory is particularly useful when

considering human transactions and the nuances of social relationships. The

brief summary of a small number of relevant theories below is used to

exemplify the type of knowledge that would routinely be available to Renal

Centres with a psychologist or counsellor in their multidisciplinary team. This

expertise could be harnessed towards staff development and patient

education and there are other contributions that a psychologist could make;

for example in breaking bad news, building coping skills or managing conflict

as well as the more traditional function of, supporting psychological wellbeing

in staff, patients and carers.

101

7.6.5 Models of helping

MacLean and Gold (1988) argue that the quality of the relationship between

clients and helper is the single most important success factor in a therapeutic

relationship. Clinical consultations provide continuing opportunities to

demonstrate empathy, respect, cultural sensitivity, genuineness and

commitment to the patient. All these are identified as important aspects of

successful therapeutic encounters and client satisfaction in a variety of

stressful health care interventions (eg Aspergren 1999, Back et al 2003, Davis

2005, Uitterhoeve et al 2008, Sandberg and Sandberg 2009, Sandhu et al

2009, Kenny et al 2010). Street et al (2009) suggest healing is most active

when the practitioner adapts their communication to build trust, mutual

understanding, adherence, social support and self-efficacy. All are important

dimensions of RRT which aims to equip the clients with the knowledge and

skills necessary to manage their own difficulties in the sustainable future.

Cottrell (2001:27) describes this point as „take off to autonomy‟

to be effective, helping has to be a purposeful and informed activity which is primarily aimed at helping the person being helped to help himself (MacLean and Gould 1988:9) Indeed, at a practical level, it is desirable for nurses in dialysis centres to shift

their role from that of „carer‟ to „trainer‟ so that minimal care and self-care

become the default treatment modality. This would considerably help home

therapies become embedded and sustainable.

It can be helpful to consider forms of helping as a matrix, where

communication style is selected according to the purpose of the interaction:

How the balance of power and control focus may purposefully alter during the

communication. The clinician is most in control and invests greater expertise

during instruction whereas counselling is more patient-led and outcome

focused.

102

Figure 7.1: Matrix to show different forms of helping which influence approach to communication

Client excluded from control of change process

Focus on Problem

Instruction

Diagnosis & prescription

Focus on Solution

Advising

Counselling

Client included in control of change process

The aim of any communication around choice of modality is to help the patient

select the modality that will fit most easily with their lifestyle and most

effectively manage their condition. Selecting the most appropriate

communication style for each individual is challenging but may make the

difference between „take off to autonomy‟ and continuing dependence.

7.6.6 Motivation and self efficacy

Self- efficacy and motivation in clients is important in facilitating sustained

behaviour change (Edelmann 2000). These may be especially important in

RRT, because it is a challenging process of learning new ways of thinking,

behaving and interacting. Expectancy theory (Vroom 1964) suggests that in

order to be motivated, individuals need not only to value the outcome but also

to feel confident they have the necessary skills, support and resources

successfully to achieve the task, i.e., have sound self efficacy (Bandura

1989). During the consultation for this report, there were many examples

where clear, accessible and relevant information is used to underpin the

process of education about home therapies. Staff were very aware how

much the skill of the clinician in conveying information helps build motivation

and self efficacy; these will also determine management of any difficulties

encountered when away from the security of the Centre.

It may be helpful also to identify which patients refer to look to their own

resources to problem solve (internal locus of control) compared to those who

103

prefer to lean on and derive confidence from others (external locus of control).

This type of knowledge can help identify individuals who will need less

support so that training and mentorship can be invested where it will have the

greatest effect.

Davis (2005) argues that clients may frequently resolve their own difficulties if

given permission to be autonomous. Information giving is one way of

conveying permission and modelling an open, accepting approach. Davis

(2005) says that clients may feel inhibited from asking questions or disclosing

their ignorance because they feel vulnerable, shy and awkward. If the

clinician is proactive, the topic and any concerns are normalised so Davis

(2005) emphasises the responsibility of the practitioner to initiate discussion:

lack of enquiry should not be equated to lack of concern.

However it is inarguable that the client influences the transaction. For

example, Sandberg and Sandberg (2009) found that assertive patients elicited

more and better quality of information from practitioners.

Other aspects of culture influence which may provide fruitful opportunities for

staff and patient education and interdisciplinary discussion are identified

below.

7.7 Practical approaches to culture change

Achieving the optimum communication style has led to the development of

different approaches to questioning. Two of the most accessible and easily

applied by practitioners trained in the medical model are Interventive

Interviewing and Solution Focused Brief Interventions. These are

summarised below

7.7.1 Interventive Interviewing

Described by Tomm (1987, 1988, 1998), Interventive interviewing is a well

established approach to questioning and exploration. Interventive

interviewing argues that communication is never aimless, so it is essential to

acknowledge this by making every transaction intentional and purposeful. .

Therefore, based on this premise it is impossible for the clinician to avoid

104

intervention, so the key responsibility is to use the intervention to maximum

effect for the patient best interests.

According to Tomm, questioning serves two purposes

Orienting: to find out information: what‟s going on?

Influencing : to bring about change

Orienting questions tend to be needed more at the start of the transaction,

(whether one or many discussions) while influencing questions may be more

helpful when beginning to explore the preferred future and possible solutions.

At all times, the questioning remains neutral and curious, to minimise the risk

of eliciting resistance

7.7.2 Solution focused brief interventions

Solution focused communication can be seen as a way of working that

focuses exclusively or predominantly on two things. 1) Support to explore the

preferred future. 2) Exploring when, where, with whom and how pieces of that

preferred future are already happening. The approach is practical and can be

achieved with no specific theoretical framework beyond the intention to focus

on these two core questions.

SFT focuses on what patients want to achieve rather than on the problems.

The approach does not focus on the past, but instead, focuses on the present

and future. The clinician uses respectful curiosity to invite the client to

envision their preferred future and identify the incremental changes needed.

Questions are asked about the client‟s story, strengths and resources, and

about exceptions, or times when the problems (eg symptoms) are less

intrusive so these resources and coping skills can be developed.

Although these communication models form the basis for models of

counselling they are also easily adaptable and transferable. The principles

are easily learned in workshops or short CPD programmes. They are

communication approaches that are equally useful for staff in negotiation with

each other, as well as for planning and problem solving with patients and

carers. The process of acquiring such skills can also act as a useful vehicle

105

for interdisciplinary learning, which facilitates knowledge exchange. It may

therefore be useful for Renal Centres to consider using these models of

communication to review their CPD training and development programmes

and for the WMRN to consider whether these type of CPD may act as neutral

opportunities for interdisciplinary and inter-Centre sharing to resolve cultural

barriers and improve communication for shared decisions about increasing

the uptake of home therapies.

7.8 Conclusion

From the consultation with Renal Centre staff, this report identifies a number

of inter-dependent factors which may present both barriers and opportunities

to increase the uptake of home therapies in the West Midlands. This Section

has suggested a number of ideas which may help support an increasing

uptake of home therapies.

The CQUIN to improve the take up of home therapies appears to be acting as

a stimulus to service development and a number of suggestions for further

work have been discussed in Sections 6 and 7. These include suggestions to:

Devise ways of strengthening patient and carer voice and involvement

Stimulate clinician behaviour change to HHD as default modality

Enhance Assisted and Minimal care dialysis programmes as both

transitions towards home therapy and models in themselves

Enhance collaboration and shared learning for most efficient use of

resources and speedy service development

Consider hidden influences such as culture and communication style

Develop more integrated approaches to professional education

programmes

Porter‟s five forces model in Section 6: Figure 6.2 suggests that some of the

barriers and opportunities identified might influence the whole system. This

may assist prioritisation of changes and investment most likely to effect

positive change.

106

Some of the opportunities for more integrated partnership working are being

explored through the partnership between the WMC-HIEC teams and the

Renal Centres. The consultation undertaken for this report has also informed

the design of the Demonstrator site project currently being designed, while the

Service Evaluation aspect of WMC-HIEC work will explore possible ways to

catalyse, embed and evaluate service improvement for sustainable change.

Meanwhile, knowledge and understanding of patient experience and ways of

supporting pre-dialysis education will be supplemented through the project

work being undertaken with the Demonstrator Sites. Additional to the

Demonstrator site projects and Service Evaluation workstream, the WMC-

HIEC CKD team have identified a need to explore workforce skills mix and

possible models of patient and carer involvement that will facilitate and

promote the uptake of home therapies.

7.8.1 The consultation aimed:

1) To explore NHS staff views about the uptake of home dialysis services

by patients with CKD in each participating Renal Centre

2) To explore NHS staff views towards the CQUIN target to increase the

uptake of home dialysis and identify how each participating Renal

Centre is working towards this goal

3) To investigate the haemodialysis equipment, explore the technical

capacity and limitations of each Renal Centre and any technology

impact in terms of increasing the uptake of home dialysis

4) To identify and better understand the flow of CKD patients taking up

dialysis at each Renal Centre

5) To understand the provision of education and support to staff, patients

and carers

6) To enquire about the numbers of CKD patients and the proportion

taking up home dialysis at each Renal Centre.

107

These objectives have been achieved and in presenting this report, the

following issues are addressed, or the need for further work identified:

Understand the barriers to expanding home therapy services:

Psychological impact of shifting care into patient homes:

Shared Decision Making & Choice:

Education for staff, patient and carer

Developing a meaningful set of metrics

Sharing learning and horizon scanning

A number of opportunities have been identified which have potential to

address some of the identified barriers to the uptake of home therapies and to

improve knowledge exchange and speedy integration of good practice. The

availability of resources to develop home therapies which are personalised,

sustainable and highly reliable is a substantial concern to Renal Centre staff.

However, it is worth highlighting that the experience of the WMC-HIEC CKD

team during this consultation strongly suggests that the most powerful

resource of all is already in place in Renal Centres; a committed, determined

and expert staff with the vision and capability to achieve their goals if they are

provided with the necessary resources and support.

108

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Appendices

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Appendix 1: Initial visits: information gathering proforma

Staff & contact details

Overall capacity by type of therapy & current caseload

In unit

Satellite

Home therapies:

HHD

CAPD

Assisted

Patient flow / journey, education and support

Unit perceived strengths and challenges

If you could only do one thing to improve uptake of home therapies, what would that be ?

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Appendix 2: Information sheet for participants

Investigating the Uptake of Home Therapy for Patients with Chronic Kidney Disease: What are the views of NHS staff at renal centres in the West Midlands?

Participant Information Sheet Purpose For patients with kidney failure, NHS policy has stressed the importance of informed patient choice about treatment options. There is also research evidence that home dialysis results in increased life expectancy, a better quality of life, and cost savings compared with dialysis provided in satellite or hospital settings. In this context, the funders of kidney services in the West Midlands (the West Midlands Specialised Commissioning Team) have developed a plan to increase the uptake of home dialysis to 35% by 2015. This study, commissioned by the Department of Health, is part of the research and development work being undertaken by the WMC HIEC (the West Midlands Central Health Innovation and Education Cluster). Its purpose is to inform the West Midlands Specialised Commissioning work with renal centres in the West Midlands to investigate ways to increase the uptake of home dialysis for patients with chronic kidney disease. The specific aim of the study is to ask NHS staff working at the renal centres in the West Midlands: what can we learn from your ideas, experiences and views in working towards this target? Method Using semi-structured telephone interviews of approximately 20-30 minutes duration, the study will gather the perspectives of three key groups of NHS staff working in the renal centres:

1. Lead home haemodialysis nurses: short telephone interviews asking for views and experiences about increasing uptake of home dialysis;

2. Technicians: short telephone interviews (or visits) to gather information and views about the dialysis machines and whether any technical adaptations could help improve the uptake of home dialysis;

3. Clinical (medical) leads: short telephone interviews asking about the flow and numbers of patients with chronic kidney disease (CKD) in their centre. The feasibility of obtaining anonymised data on the numbers of CKD patients in their centre will also be explored.

Other data may include: o Quantitative anonymised data on patient numbers receiving CKD services at each centre over

the last 5 years (as available). Administrative/statistical staff may be involved in accessing this data, as determined by the clinical (medical) leads.

The study is an evaluation of a service and not an assessment of staff conduct. All work will be undertaken between July and December 2011. Consent to record telephone interviews will be sought, or handwritten notes will be made. All data will be confidential to the research team and no individual will be identified in any report or publication. Interview data will be reported thematically, to ensure individual respondents will not be identifiable. Data will be stored and retained securely for ten years in compliance with University regulations. Participation in the study is entirely voluntary and NHS staff invited to take part can withdraw at any time until 31 December 2011 – before, during or after being interviewed. To withdraw, please email r.gutteridge@bham.ac.uk. Benefits As a result of this study, information will be provided that will be used to share good practice about ways to increase the uptake of home dialysis for patients with chronic kidney disease. Contacts

Dr Robin Gutteridge Dr Ian Davison

r.gutteridge@bham.ac.uk/robin.gutteridge@wlv.ac.uk i.w.davison@bham.ac.uk

Tel: 0121 414 3315 0121 414 4808

Dr Vickie Firmstone Dr Gary Thorpe

firmstvr@bham.ac.uk g.h.thorpe@bham.ac.uk

Tel: 0121 414 4404 0121 414 7710

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Appendix 3: Interview schedule: Lead nurses

Investigating the uptake of home therapy for patients with chronic kidney disease (CKD):

What are the views of NHS staff at renal centres in the West Midlands?

Interview Schedule for Home Haemodialysis Nurses

Thanks for contact to date and for email consent to this interview. Explain need to revisit consent

Explain that this is a research interview to feed into a report to the West Midlands Specialised

Commissioning Team about improving uptake of home dialysis for CKD patients. However, it is

important to emphasise that we are independent of the commissioners; we work for the University of

Birmingham. HIEC is about research, sharing good practice and supporting innovation, not about

monitoring or auditing renal services.

Should take about 20-30 minutes. Explain purpose of the interview is to seek their views and

experiences; there is no right or wrong answer. Ask for permission to record the interview. Clarify

that this record will be securely stored at the university and kept for ten years. Discuss that the HHD

nurse comments’ will not be attributable to the interviewee in the report; no individual will be

identifiable. However, it will be noted in the report that HHD nurses were interviewed. It is important

to discuss this issue and explain that a copy of the notes from the interview can be sent for his/her

review. Check whether they would like to see a copy of the notes made. Remind about the voluntary

nature of their contribution to the work. Reassure that they can skip any of the questions, or

withdraw at any time – before, during or after the interview until 31.12.11.

Researcher to confirm: Consent procedure completed YES/NO Verbal consent confirmed

YES/NO

Background Details

There are three main sections to this interview, each taking between 5 and 10 minutes. By

way of background to the interview, the first section aims to find out a bit more about you

and your role.

Can you briefly tell me about your role in relation to home haemodialysis team in the renal centre?

o Title o Length worked o Key responsibilities/location o Where your role fits within the service

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Increasing Home Therapy Provision in each Renal Centre

This second section is aiming to find out your views about increasing the number of patients

receiving home therapy. I understand that there is a CQUIN target of 35% patients receiving

home therapy by 2015.

As a key player in patients moving towards home therapy in the centre, what do you see as the positive and negative effects of having this target?

o Is it important? And needed? Why? Or why not?

Where do you feel the centre is at the moment in terms of reaching this target? o What proportion would you personally say are receiving home therapy? We are

not looking for accurate figures here, just your impression.

On a scale of 1 to 10 where 1 is ‘not confident at all’, and 10 is ‘extremely confident’, how confident are you that the centre will reach this 35% target by 2015?

o Why the response?

Organising for Increasing Home Haemodialysis

The third section is focussed on what is going on in your centre in terms of working towards

reaching this target.

In your Trust or centre, do you feel there is a strategy or plan for achieving the CQUIN target?

o Who is driving the strategy? If anyone? o Since when has this been in place? Is it formal, written down or discussed in

team meetings?

What is the strategy or plan for reaching the goal? How is the service being organised to reach the goal?

o Any comments?

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What would you say, if anything, that the centre is doing differently in terms of working towards this target compared with the past?

o Staffing changes o Staff Training o Finances o Organisation of wards/ areas o Equipment o Patient education o Other/different ways of working o Any particular challenges?

Is there anything particular that you are personally doing differently?

What about the future, are there any further changes planned?

Finally, do you have any other comments about the issues raised today?

Many thanks for your time. Can I remind you that if you have any further thoughts or concerns about anything you’ve said today, my contact details are on the Information Sheet. Comments can be easily withdrawn until 31.12.2011 by

emailing r.gutteridge@bham.ac.uk Would you like to check the notes I make from the interview? YES/NO

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Appendix 4: Interview schedule: Renal Technicians

Investigating the uptake of home therapy for patients with chronic kidney disease (CKD):

What are the views of NHS staff at renal centres in the West Midlands?

Interview Schedule for Technical Staff

Thanks for contact to date and for email consent to this interview Explain need to revisit consent.

Explain that this is a research interview to feed into a report to the West Midlands Specialised

Commissioning Team about improving uptake of home dialysis for CKD patients. However, it is

important to emphasise that we are independent of the commissioners; we work for the University of

Birmingham. HIEC is about research, sharing good practice and supporting innovation, not about

monitoring or auditing renal services. Should take about 20-30 minutes. Explain that purpose of the

interview is to seek their views and experiences; there is no right or wrong answer. It is important to

check and confirm that the interviewee freely consents to take part. Clarify that notes from this

meeting will be securely stored at the university and kept for ten years. Discuss that the technician’s

comments’ will not be attributable to them in the report; no individual will be identifiable. However,

as s/he is the only technician in the centre, it will be noted in the report that the person in their role

was interviewed. It is important to discuss this issue and explain that a copy of the notes from the

interview can be sent for his/her approval. Check whether they would like to see a copy of the notes

made. Remind about the voluntary nature of their contribution to the work. Reassure that they can

skip any of the questions, or withdraw at any time – before, during or after the interview until

31.12.11.

Researcher circle to confirm: consent procedure completed: YES/NO Verbal consent confirmed:

YES/NO

1) What models/manufactures haemodialysis equipment do you currently use for; a. in centre / satellite units? b. patients on home haemodialysis?

2) What were the main factors involved in your choice of equipment for home haemodialysis?

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3) What do you envisage as being the advantages and limitations of central commissioning/procurement if it were to be available for home haemodialysis equipment and consumables?

4) Do you believe the availability of recently introduced portable home haemodialysis equipment (such as the nxSTAGE) will significantly reduce the costs of modifying patient’s houses to allow use of dialysis equipment?

5) Are there any simple technical features you feel could improve current home haemodialysis equipment?

6) Are there any other comments you would like to make about the issues we have discussed today?

Many thanks for your time. Can I remind you that if you have any further thoughts or concerns about anything you’ve said today, my contact details are on the

Information Sheet. Comments can be easily withdrawn until 31.12.11 by emailing r.gutteridge@bham.ac.uk

Would you like to check the notes I make from the interview? YES/NO

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Appendix 5: Interview schedule: clinicians responsible for patient flow

data

Investigating the uptake of home therapy for patients with chronic kidney disease (CKD):

What are the views of NHS staff at renal centres in the West Midlands?

Interview Schedule for Clinical (Medical) Leads

Thank for willingness to be interviewed. Explain that this is a research interview to feed into a report to the

Figure 1: Basic Pathways for CKD Stages 4 and 5 (sent ahead by email to participants)

1. What data do you currently use for monitoring?

Thanks for contact to date and for email consent to this interview. Explain need to revisit consent .

Explain that this is a research interview to feed into a report to the West Midlands Specialised Commissioning

Team about improving uptake of home dialysis for CKD patients. However, it is important to emphasise that we

are independent of the commissioners; we work for the University of Birmingham. HIEC is about research, sharing

good practice and supporting innovation, not about monitoring or auditing renal services. Should take about 20-

30 minutes. Explain that purpose of the interview is to seek their views and experiences; there is no right or

wrong answer. This telephone interview will consider the use of aggregate patient data to inform clinical practice

and commissioning. It is important to check and confirm that the interviewee freely consents to take part. Ask

for permission to record the interview. Clarify that this record will be securely stored at the university and

retained for ten years. Discuss that the medical lead comments’ will not be attributable to the interviewee in the

report; no individual will be identifiable. However, it will be noted in the report that clinical leads were

interviewed. It is important to discuss this issue and explain that a copy of the notes from the interview can be

sent for his/her review. Check whether they would like to see a copy of the notes made. Remind about the

voluntary nature of their contribution to the work. Reassure that they can skip any of the questions, or withdraw

at any time – before, during or after the interview until 31.12.11. Figure 1 was sent with invitations to interview.

Check this has been received and they have it to hand.

Researcher: circle to confirm : consent procedure completed YES/NO verbal consent obtained YES/NO

128

a. What analyses do you do? How often?

b. Can I ask about your UK Renal Registry data?

i. Does it perform a useful function?

ii. Do you use it?

2. For commissioning purposes, is the flow diagram in Figure 1 suitable for

monitoring of Stage 4 and 5 CKD patients?

3. What are the positive and negative effects of the 35% CQUIN target?

a. On a scale of 1 to 10 where 1 is „not confident at all‟, and 10 is

„extremely confident‟, how confident are you that the centre will reach

this 35% target by 2015?

b. Where are you now and what‟s required to hit this target by 2015?

4. What indicators/metrics should the commissioners use?

a. Are there tensions between targets/ tariffs and optimum care?

b. Should the metrics depend on the types of patient e.g. age and

comorbidities?

5. We are interested in analysing anonymised patient-level data to investigate

differences in percentages on home therapies, by known/ unknown, age,

ethnicity, comorbidities etc.

a. Do you think this would be worthwhile?

b. Can I have access to your Trust data to do this?

c. Are you able to send me your current analyses?

6. Is there anything further that you would like to add?

Many thanks for your time. Can I remind you that if you have any further thoughts or concerns about anything you’ve said today, my

contact details are on the Information Sheet. Comments can be easily withdrawn until 31 December 2011 by emailing

r.gutteridge@bham.ac.uk. Would you like to check the notes I make from the interview? YES/NO

129

Appendix 6: Collated raw data: renal technician responses

Investigating the uptake of home therapy for patients with chronic kidney disease (CKD):

What are the views of NHS staff at renal centres in the West Midlands?

Responses - Interview Schedule for Technical Staff 1) What models/manufactures haemodialysis equipment do you currently use for;

i.in centre / satellite units? A range of dialysis machines are used in the regions renal and satellite centres. Systems and models used included: Fresenius 4008S Fresenius 4008H, Fresenius 5008 (in 6 units) Nikisso DBB-05 (in 2 units) Braun Dialog +, Braun Advanced and Braun + (in 2 units) Five units appeared to exclusively use models from one manufacturer Four units appeared to exclusively use Fresenius models, one unit used Braun exclusively, and two a combination of equipment from two manufacturers

ii. patients on home haemodialysis? Dialysis machines use by patients at home included: Fresenius 4008S, Fresenius 4008H, Fresenius 5008S Braun Advanced and Braun + Gambro AK 96 NxStage Fresenius 4008S appeared the most commonly used machine and was used by patients, from six centres. Patients from one centre used Braun and one centre used instruments from Gambro. The newer, smaller NxStage appeared to be being used in a small number of patients possibly on a trial basis.

2) What were the main factors involved in your choice of equipment for home haemodialysis?

The instruments are generally chosen to coincide with that used in the unit. There is experience of

use and they provide the needed treatment modality and adequacy Consistent with unit equipment - uniformity advantages To use the same basic system used in the unit so there is continuity, the nurses and patients are

familiar with it, and it is possible to provide support for just one system Partially historic The machine is simple to operate by patients and nurses It is cheap to service The equipment is small and compact

The Fresenius 4008S is simple and has been proved over many years. Other manufacturers’

machines are known from contacts to have very poor breakdown records

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The Fresenius 4008S hardly ever goes wrong and keeps going. The nurses (and patients) are familiar with it. The Fresenius S satisfies the needs of a machine for home haemodialysis as it provides the basic

requirements of dialysis and does “what it says on the can.” The system is simple, not over complex to use, and easy to train users

It is recognised that the Fresenius 4008S is not now in production. Spares will be available for several years but patients will eventually be required to move to replacement machines

The unit is trying the NxStage to see how they get on and establish pros and cons

The modality of nocturnal dialysis is a relatively easy stage to progress to using the Fresenius 4008S system. The single path make up of fresh dialysis fluid means that 8 to 10 hours of continuous therapy can be achieved if there are no interruptions or alarm activations.

3) What do you envisage as being the advantages and limitations of central commissioning/procurement if it were to be available for home haemodialysis equipment and consumables?

Potential advantages could include decreased price and a quicker availability if a central pool was

available. May have some cost advantage Possible advantages of scale for consumables, and commissioning of installations An advantage if it allowed simple choice from a range of readily available equipment at a good

price. this would provide a degree of competition Central commissioning may enable a degree of ‘picking and choosing’ certain equipment to meet

patient preferences (eg aesthetics) but care is needed not to burden a unit with to many different types of machines, and training needs

A limitation could be possible availability of less choice It should not limit choice Who would train/support technical and nursing Without appropriate technical input/knowledge, different machines could be thought of or

described as being similar, missing appropriate important characteristics. Decisions would then be made and equipment provided on a cost basis and not the features users want.

Savings on costs would be minimal as current agreements are unlikely to be significantly improved on.

4) Do you believe the availability of recently introduced portable home haemodialysis equipment (such as the NxSTAGE) will significantly reduce the costs of modifying patient’s houses to allow use of dialysis equipment?

The NxStage may allow less money to be needed for conversion of patient’s homes to allow use of

equipment. Absolutely! But possibly not cheaper in the long term, running costs for example.

Not really, due to the way we set up existing equipment. You will still need to set up a water

supply, electricity supply and drainage. The current policy is to provide patients with a ‘tray system’ which can be situated somewhere in the patients house. The unit has moved away from a procedure of supplying costly extensions or cabins due to the cost/economic implications, particularly if a patient comes off home dialysis such as successfully receiving a transplant, or if they pass away.

The unit has not provided ‘log cabin’ type modifications of patient’s home since before 1993. The process of modifying patient’s homes to accept home haemodialysis equipment has evolved so that the conversions have become relevant and less expensive. Conversion costs previously occasionally used to be £8,000 to £12,000 but are now about £2,500. A ‘tray’ system is used in which simple 15mm copper pipe for water supply is fitted, together with draining and appropriate adequate electrical outputs to deal with the in room equipment and servicing . The converted area is made as ‘clinical’ as

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possible by taking up carpet and putting down lino. Sinks used to also be fitted but this is not longer done or thought necessary.

Home modification costs to cater for a Fresenius 4008S amount to about £1,800, a tray costs £100 and the equipment is leased.

Most patients considered for home haemodialysis, if committed, can find the 6ft by 6ft space needed. A modified rectangular tray can also be used if the space available is not square. The reverse osmosis unit also takes up space, but the chair which is needed by all home haemodialysis equipment including the NxSatge also takes up significant space.

The Fresenius system can still be made to fit neatly in a corner without detrimental looks. Modification costs currently are about £1,500 but could be cheaper as an external contractor is used for the straightforward plumbing. The cost also includes supply of a range of safety features such as flood stoppers for cutting off water supply if leaks are detected eg for the reverse osmosis unit or via the tray system the equipment sits on.

The conversion or adaptation of patient’s houses to accept home haemodialysis equipment is undertaken by an external company. This can be quite expensive and it would be useful if costs were lower.

We have generally gone down the route of providing a clinical area for our home patients but this is now proving uneconomical and time consuming. We have not favoured (and nor I believe our home patients) the tray systems so the NxStage which could be described as a cross between CAPD and haemo. seems to be the answer particularly as we are using bags only

Although this may need checking the NxStage, which uses bags of fluid, may not a single batch process and as changes have to be made, interruptions to continuity occur and the process may become less efficient eg for application in nocturnal dialysis

If cost were to be taken out of the equation, the NxStage has some advantages and is relatively simple. Cost of consumables is problematic and the application in ‘nocturnal mode’ may not be acceptable.

The NxStage system is regarded as ‘transportable’. it is not agreed with it being classified as ‘portable’. The availability of the NxStage does however provide an additional treatment tool for home haemodialysis in the in the units armoury

The actual footprint of the NxStage and the Fresenius 4008S are similar. . Systems such as the Fresenius 4008S may be bigger but when the NxStage is used with

plumbing, rather than bags of fluids, the plumbing requirements are similar although the pipes may be of smaller diameter.

Although the NxStage eliminates the use of a reverse osmosis unit, further information is needed on its use to clarify the water connections and liquid storage and emptying needed. Any water storage needed may also impose disinfectant costs. A simple summary of the NxStage’s exact connection/storage needs would be needed to determine the possible modification costs necessary for patients’ houses.

The cost of use requires further clarification as consumables are more expensive. If treatment costs including consumables and rental using the NxStage equate to £80 per treatment, treatment at home for about 3-5 treatments a week for a year will cost about £20,000. This needs comparison with the cost of buying a Fresenius machine (approx £14,000) and a water purification unit (£5,000) outright and paying about £20 per treatment for consumables. This option may allow ‘accommodation alteration’ and equipment capital costs to be recouped relatively quickly.

The use of machines such as the NxStage would reduce house modification costs but what else do such systems provide and the costs involved in using bags of fluid may be an issue. If such a machine goes wrong a 24 hour replacement service may be available and the downside of this is that there is subsequently lost input and expertise from hospital renal technicians

It is acknowledged that patients benefit from home haemodialysis but it would be useful to see research, based on UK and not USA data which may not apply, which show the financial/cost benefit of home haemodialysis. Such research should factor in the full technical and educational costs needed.

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5) Are there any simple technical features you feel could improve current home haemodialysis equipment?

Not really. The machines are made pretty foolproof

The equipment could perhaps be made a bit smaller, and made to look a little less clinical. A

clinical look can constantly remind patients or carers of the patient’s illness and condition. Manufactures should make instruments simpler, user friendly and with simple guidelines. The design of the new Nikkiso range for example minimises ‘cracks and crevices’.

Manufacturers could integrate water treatment units with dialysis equipment or make them so they fit together or under one another to keep space down and reduce the overall footprint. Manufacturers should consider integrating the dialysis machine and the reverse osmosis water supply into one unit rather than the 2 separate units currently needed. When fluids are supplied in a concentrated form, requiring dilution with water for use, manufactures could possibly consider supplying these in perhaps a more concentrated form so they would take up less room if space is limited

Renal units need to have details of the ‘treatments’ patients undertake at home. Currently patients may need to write down details and technical information of the sessions and supply these. Fresenius have a system for collecting patient information but it would be very useful if there was a data system common to all manufacturers/machines allowing information to be collected and bound together

Simple, inexpensive safety procedures for equipment to facilitate treatment of use and help avoid loss of blood such as by needle dislodgement would be useful. This is relatively straightforward for single needle systems but detection of pressure loss problems with double needle systems remains a problem. Existing solutions such as the Fresenius Diacare blood detection alarm (5083391) cost £1,379 with replacement cuffs costing £274

Systems to detect needle dislodgment, and blood or liquid leaks are available but costs are prohibitive and quite high.

Many technical features to facilitate home haemodialysis by detection of blood leaks or devices to secure lines during nocturnal dialysis are already available and should be covered by best practice. There are already devices available, such as sleeves or alarms, to help patients undertake home haemodialysis and avoid issues such as needle dislodgement.

Equipment remote controls are available and allow home haemodialysis machines to be ‘tweaked’ by the patients. They are considered useful but the patients do not use them. Work on slow continuous haemodialysis in ITU units may provide useful information for home haemodialysis or nocturnal sessions

Equipment could benefit from a modified tray system. This prevents water damage and consists of a robust plastic tray with a low lip so that the home haemodialysis machine can be easily manoeuvred on and off. It has a sophisticated bespoke leak detector and if water is detected shuts down the supply of water to the room. The detector works on diffraction, rather than conductivity, which helps with ‘pure’ water detection and is not affected by dust or dirt.

More training, better training facilities, or improved learning materials are needed. These would facilitate training in or for a home environment and cover issues such as equipment ‘lining and priming’ or needling aids.

6) Are there any other comments you would like to make about the issues we have discussed today?

It would be useful to examine the issue of patients paying for the utility bills associated with home

haemodialysis. The level of allowance needs examination. Variations in positioning of equipment in homes can lead to different costs such as heating costs if positioned in a cold conservatory. Designated accommodation such as portacabins may also be used for other purposes.

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Would creation of ‘minimal care’ centres provide an additional effective tool for home care. These could be classified as home therapies for targets. They would allow possible better use of equipment, maintenance, decreased staff costs, and delivery at a central point. There would also be no loss of space within a patient’s home, less reminder of illness at home and less pressure on partners. Local availability of minimal care centres would provide an alternative for patients to consider when balancing factors such as travel and treatment times etc.

An appropriate proper budget is needed to provide haemodialysis away from conventional renal units and nearer patient’s homes. The possibility of a company providing facilities etc ‘lock stock and barrel’ could provide an additional effective tool in the treatment options available.

In some units, patients may be instructed to undertake home haemodialysis sessions during hospital renal unit working hours. Although this helps ensure technical help is readily available it may act as a barrier to patients undertaking sessions, including nocturnal dialysis which may be more convenient/beneficial to them. Nursing support is available for problems out of hours but significant ‘buy in’ would be needed to provide the necessary support if significant numbers of patients undertook home dialysis at such times.

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Appendix 7: Programme WMC-HIEC CKD Stakeholder Seminar 06.09.2011

Agenda 09.30 - 10.00: Registration and Networking 10.00 - 10.10: Welcome and Introductions Event chair: Robin Gutteridge (WMC HIEC CKD Theme Lead) 10.10 - 10.40: Dr Sandip Mitra

Consultant Nephrologist at Manchester Royal Infirmary. Winner of the British Renal Medicine Awards 2010.

10.40 - 11.00: Questions & Discussion 11.00 - 11.15: Coffee Break 11.15 - 13.00: Increasing the uptake of Home Therapies

World Café rotational discussion with a WMC HIEC facilitator for each table:

What are the most successful ways of improving support for

patients and carers to dialysis at home? Vickie Firmstone

How might technology overcome resistance to self-needling? Gary

Thorpe

What difficulties have been encountered in promoting the uptake of

home therapies, with any useful solutions? Ian Davison

What are the most effective ways of enabling informed patient

choice about home therapies? Jackie Beavan

13.00 - 14.00: Lunch and Networking

This event is open to all staff working in renal units, including

patients and carers

Places are limited and will be allocated on a first come first serve basis. To

register a place, please contact Yulander Charles y.charles@bham.ac.uk or 0121

“Bringing Home Therapies Home” Chronic Kidney Disease Theme Meeting Tuesday 6th September

The Studio, Cannon Street, Central Birmingham

West Midlands Central Health Education & Innovation Cluster (WMC HIEC)

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Appendix 8: Summary evaluation from WMC-HIEC CKD Stakeholder Seminar 06.09.2011

“Bringing Home Therapies Home” 6th September 2011

Evaluation summary

.Attended: 37. Physicians n =3: Nurses n =21: Commissioner n =1: WMC-HIEC n= 11: Service user n=1 Completed Evaluation forms; n = 24 Excellent Good Fairly Good Poor Very Poor

Overall rating of the event 16 8

(please tick)

Responses may total more than 23 ; some respondents made >1 point

What did you wish to get out of this event?

Ideas/hear from others /exchange/ share ideas with others about promoting uptake of

Home therapies = 15

Hear how/ gain understanding how other Centres are approaching/ thinking about home

therapies =4

Insight into other Centres’ practices and procedures =2

Understand the issues/ barriers/ options available/ possible solutions more thoroughly =4

Ways to improve patient education/ self care =3

Hear the keynote speaker = 2

How to start a HHD programme =1

Update on current direction =1

In general did the event accomplish this?

Yes and more =3 Yes = 17 Yes to some extent =3

What were the most interesting/useful aspects of the session?

WEST MIDLANDS CENTRAL HEALTH INNOVATION AND EDUCATION

CLUSTER (WMC HIEC)

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World Café as a means of sharing ideas/ generating discussion = 7

Interaction with others/ hearing the views of others =4

Looking at barriers AND solutions/ ways of tackling difficulties encountered =4

Keynote address =7

Gaining lots of ideas =3

The interdisciplinary audience; hearing from people I wouldn’t normally network with =3

Service user input was enlightening =2

Covering a wide range of issues in a short space of time in an interesting way =2

Challenging traditional beliefs re suitable/ unsuitable patient

General background knowledge

Sharing best practice

Acknowledging variability

Understanding that many units share the same issues

Building on others ideas to create your own

Self management options

Patient health outcomes possible from HHD

One take home idea to consider for own Centre :

Use of Skype for communicating with and supporting patients more effectively

Culture/ philosophy change; need to change staff and patient attitude

Home is the Hub. Need to justify why this patient is on anything other than home HD

Ways to continue motivating myself to teach self care

Confidence that this is do-able

Automatic use of a buddy system, rather than on request

Solo HHD

Use of aAPD for unplanned starts

Possibility of assisted HD with expectation of transition to HHD

‘Choice of modality’ showroom

Plan to put on an ‘ in centre’ study day to promote home therapies to hospital HD staff

Please suggest any ways in which the session could be improved/ what would

you like to see discussed at our next regional event?

Involve more patients & carers in meeting =2

More time for group discussion =2

More opportunities for networking with others

Include a GP viewpoint

Nurses to speak

An overview of other options available, not just things that others have tried

More discussion/ a Q&A session after the keynote

encourage the delegates to feedback after the World Café( less controlled by the

facilitators)

More time to reflect everyone’s views after the World Café

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Include a rep from Housing to inform them about HHD

Invite Commissioners/ Senior Execs

Explore ways of achieving culture change in a structured and hierarchical

organisation

How are people using Nocturnal dialysis/ flexible dialysis.. and ways to educate staff

and patients about these options

Was slightly slanted to HD. Need more input re PD

The people attending were the converted. Centres should send the staff who need

to change their mindsets/ who are resisting the culture change

Build on this session

Circulate the speaker slides please

Presentations about current innovations to share the great work everyone is doing ..

a little more sharing ( note to HIEC: possible focus for March meeting? )

An introduction to know who everyone was and where they were from (note to

HIEC, we could have provided a delegate list?)

Venue/ facilities excellent = 6

Small venue was a little cramped

Format was good =3