National Audit of Services for People with Multiple Sclerosis ...

National Audit of Services for

People with Multiple Sclerosis 2008

NATIONAL REPORT

June 2008

National Audit of Services for People with Multiple Sclerosis 2008: Full report

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Copyright

All rights reserved. No part of this publication may be reproduced in any form (including photocopying or storing it in any medium by electronic means and whether or not transiently or incidentally to some other use of this publication) without the written permission of the copyright owner. Applications for the copyright owner’s written permission to reproduce any part of this publication should be addressed to the publisher.

Copyright © 2008 Royal College of Physicians

ISBN 978-1-86016-338-8


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Commissioning organisations The Royal College of Physicians, London and the Multiple Sclerosis Trust, Letchworth

Report produced by Derick Wade Clinical Lead/Director Katharine Young Project Manager

Derek Lowe Statistician Approved by: The Multiple Sclerosis Audit Steering Group

Date: 28 May 2008 Audit correspondence

[email protected]

Acknowledgements We acknowledge the time and effort given by all of the people who completed the survey for

people with multiple sclerosis and for the NHS staff who undertook the organisational audit. We would also like to thank:

members of the Steering Group including Bernie Porter, Christine Singleton, Graham Venables and the Royal London Hospital for their input into the audit process

the following for their help in the pilot stage: Dr Ian Redmond; Dr Ljuba Stirzaker;

Dr Maggie Barker; Jacky Gruhn; Julia Hookway; Dr John H Coakley; Elizabeth Lowe; Lisa Cummins; Chris Walker; Jean Schofield

Professor Carolyn Young and her colleagues at the Walton Centre for their support,

and especially for facilitating separate presentation of their data all those who supported us through giving advice, ideas and other support.

mailto:[email protected]


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CONTENTS

Acknowledgements 3

LIST OF TABLES 5

GLOSSARY 7

PREFACE 8

Executive summary 9

Introduction 11

Method 13

RESULTS - SURVEY OF PEOPLE WITH MULTIPLE SCLEROSIS 18

Background about respondents 18

General experience of services for problems related to MS 21

Key recommendation one: specialised services 23

Key recommendation two: rapid diagnosis 24

Key recommendation three: seamless services 25

Key recommendation four: involvement in clinical decisions 26

Key recommendation five: sensitive but thorough assessment 27

Key recommendation six: self referral 27

Sentinel marker: skin pressure ulcers 28

Optional information 28

RESULTS – ORGANISATIONAL AUDIT OF NHS ORGANISATIONS 32

Acute Trust services 36

Key recommendation one: specialised services 39

Key recommendation two: rapid diagnosis 45

Key recommendation three: seamless services 47

Key recommendation four: a responsive service 51

Key recommendation five: sensitive but thorough problem assessment 54

Key recommendation six: self-referral after discharge 57

Sentinel marker: pressure ulcers 60

DISCUSSION 63

Main conclusions and recommendations 71

Appendix 1: NICE guideline key recommendations and sentinel marker 74

Appendix 2: MS audit Steering Group 78

Appendix 3: Participating organisations 79


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LIST OF TABLES SURVEY OF PEOPLE WITH MULTIPLE SCLEROSIS

Table 1: Geographical Coverage 19

Table 2: Duration with MS since diagnosis 20

Table 3: Specialist Services 21

Table 4: Overall satisfaction with services 22

Table 5: Dissatisfaction 22

Table 6: How your MS affects you 22

Table 7: Specialist neurology service 23

Table 8: Specialist neurological rehabilitation service 23

Table 9: Referral to specialist service 25

Table 10: Time to diagnosis 25

Table 11: Information about MS 25

Table 12: Information regarding transfer 26

Table 13: Involvement in decisions 26

Table 14: Sensitive but thorough assessment 27

Table 15: Self-referral 28

Table 16: Skin pressure ulcers 28

Table 17: Fatigue 29

Table 18: Mobility 29

Table 19: Bladder 29

Table 20: Pain 30

Table 21: Most major concern 30

Table 22: Most major concern – NHS success 31

ORGANISATIONAL AUDIT OF NHS ORGANISATIONS

Table 23: Participating sites 32

Table 24: Cross-tabulations MS & NSF responsibilities in Trusts 33

Table 25: Managerial responsibilities within Trusts 33

Table 26: Clinical time devoted to multiple sclerosis 34

Table 27: Formal needs assessment 35

Table 28: Plans to use formal needs assessment next year 35

Table 29: Patient involvement 36

Table 30: Specialist services available/provided 37

Table 31: Specialist beds and clinics 37

Table 32: Specialised clinical time devoted to multiple sclerosis 38

Table 33: Commissioning & provision 40

Table 34: Adequacy of service 40


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Table 35: Plans to improve services in the next year 41

Table 36: Monitoring the performance of providers (PCT / LHB only) 41

Table 37: Commissioning and provision of neurological rehabilitation services 42

Table 38: Adequacy of service 43

Table 39: Plans to improve services in the next year 44

Table 40: Monitoring the performance of providers (PCT / LHB only) 44

Table 41: Rapid access 45

Table 42: Plans for increasing rapid access in next year 46

Table 43: Team guidance for rapid referral 46

Table 44: Co-ordinated care pathways across organisational boundaries 48

Table 45: Development of care pathways over the next year 49

Table 46: Specialist services needed by people with MS 52

Table 47: Adequacy of services needed by people with MS 52

Table 48: Plans to improve range / availability of services, if deficient 53

Table 49: Patient involvement in clinical decisions 53

Table 50: Formal mechanisms to involve people with MS in planned service developments 54

Table 51: Use of structured assessment protocols 55

Table 52: Performance of structured assessment protocols 56

Table 53: Plans to increase use of structured assessments in next year 57

Table 54: Documented plans for self-referral – Providers 58

Table 55: Documented plans for self-referral – Commissioners 58

Table 56: Self-referral back to specialist services 59

Table 57: Monitoring performance in responding to patient referral 59

Table 58: Plans to allow self-referral in next year 60

Table 59: Incidence of skin pressure ulceration 61

Table 60: Response to changes in incidence of skin pressure ulcers 61

Table 61: Plans to monitor and reduce incidence of skin pressure ulcers 62


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GLOSSARY

MS Multiple sclerosis NSF LTC National Service Framework for Long-term Conditions

PCT Primary Care Trust RO Regional Office SHA Strategic Health Authority

Trust Acute care Trusts (hospitals) LHB Local Health Boards DoH Department of Health


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PREFACE

People with multiple sclerosis face many challenges – often a prolonged period of symptoms but no diagnosis, an uncertain prognosis which can encompass anything from a relatively normal life to severe disability for years, loss of social roles such as work and parenting, loss of independence, and many unpleasant symptoms. The NHS should help people face and minimise these challenges; unfortunately it is not always successful at this. The National Institute for Health and Clinical and Excellence (NICE) recognised the need for improved NHS services and produced national guidance on the management of multiple sclerosis in 2003. The six key recommendations and one sentinel marker of service quality could also be used as seven standards that the NHS should achieve. An initial audit by the Royal College of Physicians and the MS Trust in 2005/6 showed that standards were rarely met in full and there was a high level of dissatisfaction amongst people with multiple sclerosis. The two organisations joined forces again in 2007/08 to repeat the exercise on a national scale (England and Wales). Here we present the results of the first full national audit that measures the quality of NHS services for people with multiple sclerosis against the seven standards derived from the NICE national clinical guideline. The results and subsequent recommendations are relevant to all NHS organisations – hospitals and other service providers, commissioners, and those who are responsible for monitoring the quality and adequacy of services to the whole population. The results should help to improve their performance in delivering high quality services to people with multiple sclerosis. Moreover they should also be relevant to the implementation of the National Service Framework for Long-Term Neurological Conditions across the UK. People with multiple sclerosis, and people with other longterm neurological conditions should also find the report helpful. It provides data to support local initiatives for service development. We believe it is imperative that the NICE national clinical guideline is fully implemented, to improve the health of people with multiple sclerosis and to ensure that they have equal access to healthcare. We hope that this audit will assist all those who commission or provide care for people with multiple sclerosis, identifying where improvements in services and/or commissioning are required. This will require significant national investment in neurological rehabilitation services, and a great increase in the attention paid to the monitoring and prevention of skin pressure ulcers.

Derick Wade Clinical Lead, MS Audit

Katharine Young Project Manager, MS Audit

Chris Jones Chief Executive, MS Trust

Jonathan Potter Clinical Director,

Clinical Effectiveness & Evaluation Unit, RCP

Graham Venables President, Association of

British Neurologists


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EXECUTIVE SUMMARY “Some 10 million people in the UK are living with a neurological condition which has a significant impact on their lives, and they make up 19% of hospital admissions.” (Neurological

Alliance, 2003). This document reports upon an audit of NHS services for people with multiple sclerosis (MS), and identifies four areas in which the NHS can take action to improve the standard of care. People with MS have a wide variety of clinical problems and a varied and

unpredictable disease course, which makes an audit of these services a useful marker of service quality for many other neurological conditions.

Moreover, with an estimated mean direct medical cost of £6,810 per person per year, MS is an expensive condition, with much of that expense being avoidable with good management1. A grade 4 pressure ulcer, for example, which is always avoidable, costs the NHS an estimated £10,551, with total costs in the UK estimated as being £1.4–£2.1 billion - or around 4% of the total NHS expenditure2.

Background In November 2003 NICE made six key recommendations concerning the management of

people with MS, and identified one sentinel marker for service quality. In 2005/6 an initial audit identified major failures in NHS services. In 2007/8 a full national (England and Wales) audit was undertaken collaboratively by the Royal College of Physicians (RCP) and the MS

Trust. A multi-professional working party oversaw the audit which used the key recommendations and sentinel marker identified in the NICE guideline as seven standards by which to measure the quality of services offered.

Methodology Data were collected from four sources: 1300 people with MS (as service users); 127/157 NHS

Trusts (as service providers); 140/172 service commissioning organisations, and 7/13 organisations responsible for performance management. The available data suggest that the sample was representative of its population.

Results

Key Results

Access to neurological rehabilitation is unacceptably low, with very limited

commissioning and only slightly less limited actual provision

Access to specialist neurological services is generally good

Time between initial referral and final diagnosis remains long

Patient involvement both in the planning of individual personal care and in service provision and development is very poor

Assessments are perceived by people with MS generally to be carried out in a sensitive and thorough manner

Integration of care between health and social services is felt to be poor

1 G Kobelt, J Berg, P Lindgren, N Russell, R Nixon Costs and quality of life of multiple sclerosis in the United Kingdom 2006 in European Journal of Health Economics S96-S104 2 National Institute for Health and Clinical Evidence Pressure ulcer management - cost analysis of the new recommendations in the prevention and treatment of pressure ulcers quick reference guide Implementing NICE Clinical Guideline no. 29 London:NICE;September 2005; Bennett G, Dealey C, Posnett J The cost of pressure ulcers in the UK Age & Ageing 2004;33(3):230-235; Allman RM, Goode PS, Burst N, Bartolucci AA, Thomas DR. Pressure ulcers, hospital complications, and disease severity: impact on hospital costs and length of stay Adv Wound Care. 1999;12(1):22-30


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The major deficit in care provision is the access to specialist neurological rehabilitation. This is

particularly important for people with a chronic disabling condition which is characterised by periods of relapse and by a wide range of neurological losses (e.g. weakness, loss of sensation, bladder function, fatigue).

Some service improvements have been made since the NICE guideline was published. However the level of commissioning and monitoring of services for people with MS is low;

improvement probably resulted from the commitment of local clinical champions.

The audit identified the lack of any „ownership‟ for ensuring that the NHS as a whole provides adequate services across the whole range of services necessary to meet the needs of people with MS. Though informal networks and local clinical arrangements clearly exist, and work well

in places, there is no identified person, role or organisation with responsibility for ensuring adequacy of services. The audit also highlights ambiguity both about the nature of and the responsibility for „specialist services‟, and about long-term conditions; the emphasis should be

on long-term neurological conditions.

The main recommendations that follow from this audit are:

All NHS Organisations

should have one specific person or role responsible for services for people with long-term neurological conditions including

multiple sclerosis (MS)

should involve people with MS in setting standards, in service development and in commissioning

should have one specific person or role responsible for monitoring and reducing the rate of skin pressure ulceration

Commissioning Organisations

should commission specialist neurological rehabilitation services to enable every person with MS to have ready and rapid access to these services

Acute Trusts/ Provider Units

should ensure that any person with MS in their care for whatever reason has timely access to an expert neurology

service and an expert neurological rehabilitation service

should ensure that health professionals engage people with multiple sclerosis fully in all clinical decisions

should give people with multiple sclerosis information about relevant local non-statutory services as well as national services

Department of Health

should review the organisational framework of the NHS so that one organisation becomes responsible for ensuring that the population of people with MS in a defined area has access to

services that can meet all of their clinical needs in a timely way, across the whole range of problems they face, managed in a coordinated way, and with staff who have appropriate expertise


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INTRODUCTION

Neurological disease is an important cause of significant disability in people aged under 65

years, but data on the management by health services of people with long-term neurological conditions are largely absent. The resource implications of neurological disability are not accurately known, but are considerable both directly (i.e. money paid to provide care) and

indirectly (i.e. loss of productive activity). There are no data to indicate whether the health resources used by people with neurological

disability are either effective or efficiently distributed. Indeed it is not clear whether the total resource available is even sufficient for the needs.

In this situation it is important to gather data. Current NHS information systems are incapable of collecting data in relation to disability (as opposed to disease) and are incapable of collecting data across groups of disease (such as neurological disease).

One way to investigate the management of people with long-term neurological conditions by the Health Service is to focus on a specific disease or disorder that may indicate the overall

standard of care. Multiple sclerosis is a useful marker condition for investigating the management of other

disabling neurological disorders. It is relatively common (1 in 700 of the population), and it manifests in a wide variety of ways covering most of the situations faced by people with other neurological diseases.

Furthermore several national documents have made recommendations about services for people with multiple sclerosis, most notably the National Clinical Guideline on the Management

of Multiple Sclerosis in Primary and Secondary Care published by the National Institute for Health and Clinical Excellence (NICE) in November 2003 and the National Service Framework for Long-Term Conditions (NSF LTC) [2005].

Between October 2005 and March 2006 the Royal College of Physicians and the MS Trust undertook an initial audit of the provision of services for people with multiple sclerosis, judging

the service against seven standards derived from the six key recommendations and one sentinel marker proposed within the NICE guideline:

The provision of specialised services

Rapid initial diagnosis

Provision of seamless services across all boundaries

Involvement in clinical decisions

Sensitive but thorough assessment

Self-referral

Registration and investigation of each new skin pressure ulcer

The 2005/6 audit investigated services within six of the 28 Strategic Health Authority areas then existing in England (North West London; Greater Manchester; Dorset/Somerset; Kent;

Birmingham and County Durham). Wales, Scotland and Northern Ireland were not included. The conclusions of the 2005/6 audit were published in July 2006 and were summarised as

follows:


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“The main finding of this audit is that the standards set by the seven key recommendations made in the NICE National Guideline for the Management of Multiple

Sclerosis are not being met in that:

Service providers are not using them to guide service delivery;

Service commissioners are not using them either to commission services or to monitor service delivery;

Service performance managers are not using them to monitor that the health care needs of their population are being met.

A few organisations adhere partially to one or two, but most do not adhere to any.

Furthermore, most organisations are not specifically planning to implement any of the recommendations.”

The results of this first audit undertaken in 2005/6 were published3 and were notified to all strategic health authorities, primary care trusts and acute hospital trusts (not simply those that

took part). Following the 2005/6 report, a full national audit in England and Wales was undertaken in 2008

to assess the implementation of the NICE guideline and the NSF for Long Term Conditions, and this document reports upon it.

This audit retained the focus on multiple sclerosis both as an important single disease causing long-term disability, and as a marker condition indicative of the more general standard of services for people with long-term neurological disorders.

Aim and objectives of the audit The overall aim was to improve services for people affected by multiple sclerosis

The objectives were:

1 To quantify the differences between recommendations made in the NICE National Clinical Guidelines and actual service provision and to identify variations across England and Wales, through comparing data obtained from:

i) people responsible for governance of health service provision (SHAs and ROs) ii) health care commissioners (PCTs/LHBs) iii) service providers (Acute Trusts)

iv) people with MS needing and using services

2 To measure progress in the implementation of the National Clinical Guideline for Multiple Sclerosis.

3 To compare performance against relevant parts of the National Service Framework for

Long Term Conditions where possible.

4 To develop further strategies to facilitate improvement of service delivery to people with multiple sclerosis in England & Wales.

5 To increase awareness in the organisational level of the NHS of the NICE National Clinical Guideline for MS.

3 Wade, Derick NHS services for people with multiple sclerosis: a national survey. An audit of commissioning, provision, and

experience of services used by people with multiple sclerosis in 2005–6, against recommendations from Nice Clinical Guideline 8 2006: Royal College of Physicians and the Multiple Sclerosis Trust


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Method

The audit was carried out by the the Clinical Evaluation and Effectiveness Unit of the Royal College of Physicians (London) in collaboration with the MS Trust. It covered England and Wales, and collected data concerning service provision from four different points of view to

ensure that a comprehensive set of information was generated. Methodological changes from 2005/6 audit

There are three major alterations from the 2005/6 audit. First, on this occasion we audited services in the whole of England and Wales and not just from

selected strategic health authority areas. Second, to collect data we used a web-based system rather than a paper-based system. The

only exception was that people with multiple sclerosis could use paper if they wished; the data were then entered by volunteers.

Third we adapted and changed the questions in the light of our experience. Many people made very helpful comments when completing the first audit questionnaire, and our data also made it clear that some questions were not useful or needed major change.

General outline The audit used a 360 approach, collecting data from all four parties involved in the services:

People with multiple sclerosis - service users

Acute NHS hospital Trusts - service providers

Primary care trusts (PCTs) and Local Health Boards (LHBs) - service commissioners

Strategic Health Authorities (SHAs) and Regional Offices (ROs) - service performance

managers The audit collected data from service providers, service commissioners and organisations

responsible for monitoring service provision that referred to the situation in January and February 2008 and their plans for the next 12 months. For people with multiple sclerosis the data related to experiences over the preceding 12 months (i.e. 2007).

The organisational data were collected from senior people within the various organisations. No direct or prospective data were collected; the data concerned service organisation and delivery

rather than actual clinical practice with individual patients. The population and services studied

Data were collected concerning NHS services delivered to the whole population of England and Wales. Scotland and Northern Ireland were not included as their health service arrangements are different, and because the NICE recommendations only applied to England and Wales. The

audit did not include Social Services because NICE recommendations are specific to health organisations.

In all cases the data concerned delivery of NHS health services to people with multiple sclerosis. Specifically the audit was not restricted to services designated as multiple sclerosis services. This was because people with multiple sclerosis frequently (and

appropriately) use a wide variety of services such as urological services, pain services and general medical services to manage problems that nonetheless arise from their multiple sclerosis. Moreover the NICE recommendations applied to all services, and did not specifically

refer to designated multiple sclerosis services.


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Collecting data from relevant organisations Data on the monitoring of service commissioning (performance management) were collected

from SHAs in England and ROs in Wales. Data on service commissioning were collected from PCTs in England, and LHBs in Wales. In

Wales the Health Commission Wales commissions designated specialist services and it stated that it considered multiple sclerosis services to fall within its remit; LHBs commission general services. Consequently Health Commission Wales was also approached for data on service

commissioning (but they did not provide any information).

Data of service provision were collected from Acute Trusts (i.e. hospitals) because it was assumed that the great majority of health service provision to people with multiple sclerosis for problems associated with their multiple sclerosis would be delivered by acute sector trusts and

hospitals. Non-neurological specialist trusts, mental health trusts, ambulance trusts and learning disability trusts were not approached.

Within an organisation it was not easy to know who would both know the answers and have the time to respond. Therefore we approached a variety of people within each organisation (different organisations used different titles):

Chief Executive

Medical Director

Lead for long-term conditions

Managers for clinical governance, effectiveness or audit

Public health directors

Head of commissioning

In addition neurologists, MS specialist nurses and others were asked if they could identify and, if possible, contact named individuals working in their local organisations who might be able to

help.

Standards Standards were derived from the National Clinical Guideline for Multiple Sclerosis4. The audit was focused on the six key recommendations and one sentinel marker. These are shown in

detail in Appendix 1. In summary the seven aspects audited were the commissioning and provision of:

specialised services (neurological and neurological rehabilitation)

a rapid initial diagnosis of the disease

seamless services

responsive services (i.e. patient-centred, responding to individual circumstances)

sensitive but thorough assessments

self-referral back to specialised services

monitoring of frequency and management of skin pressure ulcers (sentinel marker)

4 National Collaborating Centre for Chronic Conditions. Multiple Sclerosis: National clinical guideline for diagnosis and

management in primary and secondary care (NICE Clinical Guideline 8) London: Royal College of Physicians, 2003 (www.rcplondon.ac.uk/pubs/books/MS/index.asp)


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Organisations: data collection Questionnaires were developed to collect audit data related to the standards derived from the

recommendations made by NICE. The questions collected data that measured the extent to which an organisation used the recommendations (see appendix 1) when considering services that were or should be used by people with MS.

In addition, for each organisation, some initial contextual information was gathered. This concerned who took responsibility for the questionnaire and the perceived involvement of the

organisation within overall services for people with MS. Hospitals in particular are often part of a network, with some services being provided directly, some being provided by visiting staff,

and some services being provided in other organisations. The questions developed and the answer options were identical for each organisation as far as

this was practical, so that direct comparisons could be made. The answer options were hierarchical, with one extreme indicating specific use of the NICE

guideline recommendation and the other indicating that nothing was done. In between we specifically included an option on using the National Service Framework for Long-Term Conditions (NSF LTC) because many organisations had used this to guide their work in 2005.

Thus the audit asked for the greatest level of specificity employed when performance managing, commissioning or providing services. The following options were available:

specifically for people with MS

in line with the National Service Framework for Long Term Conditions

for neurology as a whole

at a broader level (i.e. within General Medical Services)*

no

not known

*The qualifier for the broader level option – “i.e. within General Medical services” - was offered

to acute trusts only. The questionnaires and other aspects of the audit (e.g. web-based data entry system) were

piloted by various people (see acknowledgements), modified in the light of feedback and then used.

The questionnaire was placed on the MS Audit website. For each question, the respondent could add additional explanatory information (or make any other comments). The person or people within an organisation were given the URL link to the system and a unique username

and password, and could enter data at any time during the data collection period. Organisations completed data entry between 4th February 2008 and 31st March 2008.

The final questionnaires used are available on the audit website: http://msaudit.rcplondon.ac.uk/.

People with MS: sample selection and data collection People with MS from England and Wales were recruited in several ways. The intention was to ensure a sample that covered the whole geographic area, people diagnosed within the last 12

months and the full range of disabilities seen. The sample was obtained via a variety of avenues. The audit was displayed prominently on the

website of the MS Trust, and all supporters were notified via newsletter. MS Society branches

http://msaudit.rcplondon.ac.uk/


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and MS Therapy Centres were also notified, and notices were posted on all websites, fora and discussion groups known to be used by people with MS, including Jooly‟s Joint and the MS

Resource Centre. Invitation cards were also distributed via MS specialist neurologists, nurses and therapists. Letters were sent to the editors of regional and local newspapers advertising the audit.

People with MS were asked to provide data in one of two ways. The preferred option was to complete a form electronically on the internet. The RCP website hosted the questionnaire.

Anyone could register online.

An alternative option was available. People could contact the MS Trust and ask for a paper form. Allowance was made for up to 500 paper forms to be completed, this limit being imposed because each form would need entry into the computer data-base. Paper forms were

sent out and a stamped and addressed return envelope provided. In fact all requests for paper copies (about 200) were met without limit.

The survey stressed that the respondent should fulfil the following criteria:

Have multiple sclerosis. The person with multiple sclerosis could ask someone else to

complete the form, provided the information came from and related to the person with MS. No check on diagnosis was made.

Have used or wanted to use an NHS service (including primary care) over the preceding 12 months in relation to their MS. No independent check was made.

Within the data collection process any person could make additional comments on the services they had received.

The questions fell into three major groups:

1) The first group focused on the seven recommendations from the NICE guideline. It was obviously not possible or appropriate to match the organisational questions and answers. Instead the questions asked about the person‟s experience as set against

each recommendation.

2) The second group were contextual, giving information about the person with MS. This enabled some estimate to be made about how representative the sample was. In

addition it would enable some cross-validation of answers.

3) The third small group asked about satisfaction with NHS services. The first audit showed a marked discrepancy between stated satisfaction and qualitative comments which implied marked dissatisfaction. Consequently this audit included an additional question

on dis-satisfaction because this seems to be a different construct (i.e. satisfaction and dissatisfaction are not simply opposite ends of the same spectrum).

In addition each person was asked what they considered their most important problem was, and whether it had been satisfactorily handled by the NHS. The survey used is available on the audit website: http://msaudit.rcplondon.ac.uk/.

Data handling All data were collected, directly or indirectly, using a custom-built web-based questionnaire

straight into an initial data-base and they were then imported into SPSS version 15 and analysed. The primary analysis was descriptive.

The data are presented in the order they were obtained by the questionnaires.

For the organisations, the data for each question are set out for the three organisational levels (i.e. provider, commissioner, monitor) to allow direct comparison. Within each set of

http://msaudit.rcplondon.ac.uk/


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questions, the data from England are presented first, followed by the data for Wales allowing the two countries to be compared.

The data are presented separately for England and Wales for two reasons:

1) The NHS in Wales is a separate organisation, and has some different policies and priorities.

2) The evidence from the national stroke audit suggests that service quality might be appreciably different in Wales.

As in the 2005/06 audit, there were a small number of organisations who registered and participated, but who stated that their role was undertaken by a neighbouring organisation on

their behalf. In total 13 provider Trusts stated that 3 additional other Trusts provided their services for them. This was largely accounted for by one Neurological Centre, the Walton Centre in Liverpool. Twelve Trusts (three in Wales) stated that their services were provided by

the Walton Centre. For the two single Trusts stating that two other Trusts provided their service, we populated the

forms of the secondary Trusts with data provided by the primary Trust (i.e. the data were replicated). This allowed us to acknowledge that services were provided.

However one particular Trust, the Walton Neurological Centre also accounted for twelve other Trusts. It seemed unreasonable to duplicate one set of data so many times and so we have presented data from the Walton Centre separately, with their consent. It should be noted that

two of the 12 Trusts additionally completed questionnaires while stating that services were delivered by the Walton Centre. These data were not used.

Presentation of results Data from people with multiple sclerosis are presented first so that the reader can set the organisational results in the context of reported experience.

Organisational data has been presented question by question, contrasting data from those responsible for monitoring, service commissioning and service provision. Each part is preceded

by the key points identified. In the key points the percentages given are specific to England. In the tables relating to each question we have also contrasted the replies from England with the replies from Wales.

Categorical data are summarised as percentages with numerator and denominator shown. Numerical results are summarised by the median and inter-quartile range (IQR). Denominators

will vary according to how much missing data there is.


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RESULTS - SURVEY OF PEOPLE WITH MULTIPLE SCLEROSIS

Key messages:

The data analysed came from 1300 people with MS (1220 in England, 80 in Wales)

Data represents 2.5% of the whole population of people with MS

The web tool was accessed by 1631 persons. Of these 7 were excluded as they were not persons with MS. They did not progress beyond question 1.1.

Also excluded from analysis were 260 persons with registration data only; 18 of these had made occasional comments against specific questions and another 13 made very sporadic

answers to questions and commented. It may be that some of these persons entered their data and their data were not saved and only their comments were saved, or it may be that they chose only to answer and comment in relation to certain questions. In any event there

was no indication from any of these persons that they had been in contact with the NHS about a problem related to their MS over the last 12 months.

Of the remaining 1364 persons there were 38 who in response to question 1.1 said they had not been in contact with the NHS about a problem related to their MS over the last 12 months. The other 1326 persons said they had been in contact with the NHS during this time but of

these there were 19 who then gave no further information to the survey. Six responses were from people living in Scotland and one person‟s area of residence was unknown. Approximately one-third of people with multiple sclerosis added freetext comments alongside their answers.

Therefore the detailed results that follow are for 1300 persons with multiple sclerosis, 1220 living in England and 80 in Wales. Given a population in the two countries of 54 million and a

prevalence of 1/1000, one can estimate an approximate 54,000 people with MS in the population, making the sample approximately 2.5% of the whole population of people with MS.

Background about respondents

Key messages:

The geographical spread of the sample of people with MS was reasonable

The median age was 51 years at the time of survey. The median age at diagnosis was 39 years, suggesting a sample diagnosed at a slightly older age of onset than usual.

The median duration of disease was 9 years, less than might be expected

Two thirds (73%) were women, as would be expected

One hundred and twenty three people (9%) had been diagnosed within the last 12 months, a higher proportion than expected (4%) reflecting the emphasis on obtaining information about the process of diagnosis

Most people felt that MS had a major (48%) or moderate (37%) effect on their life with only 1% saying there was no effect; this level of impact would be expected

given the requirement that the person should have used the NHS within the last year


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Geographical coverage

Table 1: Geographical Coverage

Audit sample Proportion/number of national population aged 15 and over

% N % 000,s

SHA (England):

East of England 9.1 118 10.4 4601.8

East Midlands 5.4 70 8.2 3604.1

London 7.8 102 13.9 6152.3

North East 4.2 54 4.8 2120.6

North West 9.8 128 12.7 5626.9

South Central 11.7 152 7.4 3271.4

South East Coast 8.8 114 7.9 3494.3

South West 13.2 172 9.7 4268.5

West Midlands 11.2 146 9.9 4383.8

Yorkshire and the Humber 12.6 164 9.6 4232.7

Wales 6.2 80 5.5 2445

Total 100.0 1300 100 44201.5

* Mid 2006 estimates of resident population aged 15 and over*

* (SHA) http://www.statistics.gov.uk/STATBASE/ssdataset.asp?vlnk=9739&More=Y *(Wales)http://www.statistics.gov.uk/statbase/ssdataset.asp?vlnk=9661&More=Y

Age of responders The age of responders was calculated as number of years to 2008 from the year of birth, and

was known for 1290 (1213 England, 77 Wales). England

The median age was 51 years, interquartile range 43 to 59 years, 80th centile range 36 to 65 years, range 18 to 88.

Wales The median age was 53 years, interquartile range 43 to 62 years, range 28 to 81.

Age at diagnosis The age at diagnosis with MS was calculated from the year of birth and the year of diagnosis,

and was known for 1284 (1208 England, 76 Wales). England

The median age at diagnosis was 39 years, interquartile range 31 to 46 years, 80th centile range 26 to 53 years.

Wales The median age at diagnosis was 41 years, interquartile range 21 to 49 years.

Duration with MS since diagnosis Duration with MS since diagnosis was calculated as number of years to 2008 from year of diagnosis, and was known for 1293 (1214 England, 79 Wales).

England The median time since diagnosis was 9 years, interquartile range 4 to 17 years, 80th centile

range 2 to 26 years.

http://www.statistics.gov.uk/STATBASE/ssdataset.asp?vlnk=9739&More=Y

http://www.statistics.gov.uk/statbase/ssdataset.asp?vlnk=9661&More=Y


20

Wales The median time since diagnosis was 9 years, interquartile range 5 to 14 years.

Females comprised 73% (891) and males 27% (326) of the English responders (unknown for 3). The breakdown for Wales was 76% (61) and 24% (19) respectively.

Table 2: Duration with MS since diagnosis

ENGLAND Female Male

Age Median 50 54

Inter-quartile range 42-58 45-61

N of persons 885 326

Age at diagnosis Median 38 39



Years with MS Median 8 11



WALES Female Male

Age Median 48 58


N of persons 58 19

Age at diagnosis Median 39 50


N of persons 57 19

Years with MS Median 9 9


N of persons 60 19


21

General experience of services for problems related to MS

Key messages:

78% of people with multiple sclerosis thought that specialist neurological services were available but only 41% thought that they had access to specialist neurological

rehabilitation services

Most people (82%) had access to specialist MS nurses and 58% to specialist MS

physiotherapists

When asked about satisfaction with NHS services, 10% were not at all satisfied and

23% were very satisfied; when asked about dissatisfaction, 7% were very dissatisfied and 40% were not at all dissatisfied

Rates of satisfaction and dissatisfaction were similar in England and Wales

When asked how the NHS had helped with their self-defined greatest problem,

10% thought that the NHS had done well but 16% were very unsatisfied, agreeing that the NHS “had not really tried”

These questions aimed to obtain general information about the use of NHS services by people

with MS in the sample; they are not related to the NICE guidance and simply help establish a context. They relate to the perception of the respondent.

Table 3: Specialist Services As far as you know, are there specialist services for people with MS in your area:

ENGLAND % Yes Yes No NK

Specialist MS neurological services?* 78 954 77 189

Specialist neurological rehabilitation services?** 41 496 113 611

Specialist MS nursing? 82 1002 71 147

Specialist MS physiotherapy? 58 705 138 377

WALES % Yes Yes No NK

Specialist MS neurological services?* 69 55 16 9

Specialist neurological rehabilitation services?** 29 23 15 42

Specialist MS nursing? 83 66 6 8

Specialist MS physiotherapy? 63 50 11 19

*specialist neurology service: services for diagnosis of MS and subsequent symptoms, and provision of specific drug treatments, especially disease modifying drugs **specialist neurological rehabilitation service: services providing an integrated rehabilitation programme through a multidisciplinary team when there are complex problems, aiming to help the person live independently


22

Overall satisfaction with standard of service received from the NHS Table 4: Overall satisfaction with services Over the last year, how satisfied were you in general with the standard of service received from the NHS (mark one)*:

ENGLAND % Yes N

Not at all satisfied 10 119

Somewhat satisfied; the NHS could do better 30 364

Moderately satisfied; the NHS did as well as I expected 37 452

Very satisfied; the NHS did better than I expected 23 277

WALES % Yes N

Not at all satisfied 11 9

Somewhat satisfied; the NHS could do better 28 22

Moderately satisfied; the NHS did as well as I expected 39 31

Very satisfied; the NHS did better than I expected 22 17

* 9 persons did not give an answer

Dissatisfaction

Table 5: Dissatisfaction Next, considering all your experiences over the last 12 months, how dissatisfied were you with the services

received from the NHS?

ENGLAND % Yes N

Not at all dissatisfied; no complaints 40 481

A little dissatisfied; there were some things that could have been done better

39 471

Dissatisfied; many things could have been better, but some were OK 14 173

Very dissatisfied; nothing much was helpful or useful 7 80

WALES % Yes N

Not at all dissatisfied; no complaints 42 33

A little dissatisfied; there were some things that could have been done better

34 27

Dissatisfied; many things could have been better, but some were OK 18 14

Very dissatisfied; nothing much was helpful or useful 6 5

* 11 persons did not give an answer

How your MS affects you

Table 6: How your MS affects you Overall, how much impact does MS have upon your life now? (N=1278 RESPONSES)

ENGLAND % Yes N

None 1 8

Slight 14 170

Moderate 37 450

Major 48 573

WALES % Yes N

None 1 1

Slight 18 14

Moderate 26 20

Major 55 42


23

Key recommendation one: specialised services

"Specialised neurological and neurological rehabilitation services should be available to every person with MS when they need them usually when they develop any new symptom, sign, limitation on their activities or other problem, or when their circumstances change."

Key messages:

About three quarters of people with MS (73% England; 76% Wales) thought that

they could be seen by a specialist neurologist if needed

Only one third of people with MS (36% in England, 31% in Wales) thought that

they could be seen by a specialist neurological rehabilitation service if needed

Perceptions were similar in England and Wales

These questions concerned the first NICE recommendation: the NHS should enable people with

MS to be seen in a specialist service (neurology or neurological rehabilitation) whenever they need it. The questions focused on the beliefs and expectations of respondents, expecting these to be derived from some experience directly or through other people with MS locally.

Table 7: Specialist neurology service If you or your GP thought you needed to be seen in a specialist neurology service (Services for diagnosis of MS and subsequent symptoms, and provision of specific drug treatments, especially disease modifying drugs):


Could you be referred to a specialist neurology service? 73 888 43 289


Could you be referred to a specialist neurology service? 76 61 5 14

Table 8: Specialist neurological rehabilitation service

If you or your GP thought you needed to be seen in a specialist neurological rehabilitation service (Services providing an integrated rehabilitation programme through a multidisciplinary team when there are complex problems, aiming to help the person live independently):

ENGLAND % Yes Yes No NK Could you be referred to a specialist rehabilitation service? 36 445 66 709

WALES % Yes Yes No NK Could you be referred to a specialist rehabilitation service? 31 25 4 51


24

Key recommendation two: rapid diagnosis

”An individual who is suspected of having MS should be referred to a specialist neurology service and seen rapidly within an audited time. The individual should be seen again after all investigations necessary to confirm or refute the diagnosis have been completed (also rapidly

within an audited time).”

Key messages:

Over half (60%) of all newly diagnosed patients were seen by a neurologist within 6 weeks, and nearly half had all tests completed within six weeks of first seeing a neurologist

The median (IQR) time between initial referral and final diagnosis was 20 (7-39)

weeks; this implies that half of all people took more than 20 weeks in total to

achieve final diagnosis (against a NICE standard of 12 weeks)

Just over half of people were given written information about the disease and were

given information about national support organisations after diagnosis, and 60%-67% were given contact details about a specialist neurologist or specialist nurse

Only 16% were given information on specialist therapists or an opportunity to attend an educational course and only 38% were given information about local support groups

These questions concern the second key recommendation about the process of diagnosis. Consequently the questions only applied to those diagnosed in the last 12 months. There were 9% (123/1307) who had been diagnosed in the last 12 months. Four of these did not answer

the rest of the questions. Therefore the data are from 118 people.


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Table 9: Referral to specialist service


Were you seen by a neurologist within 6 weeks of referral by your GP?

60 67 35 9

After the first consultation with the neurologist, were all tests carried out within 6 weeks?

49 54 49 8

WALES % Yes Yes No NK Were you seen by a neurologist within 6 weeks of referral by your GP?

29 2 5 -

After the first consultation with the neurologist, were all tests carried out within 6 weeks?

43 3 3 1

Table 10: Time to diagnosis

ENGLAND Median Interquartile

range 80th centile

range N of

persons How many weeks passed from first seeing your GP to final confirmation of the diagnosis

20 7-39 2-68 109

WALES Median range N of

persons How many weeks passed from first seeing your GP to final confirmation of the diagnosis

16 6-40 7

Table 11: Information about MS

During or straight after diagnosis, were you given any of the following:


Written information about MS? 56 62 46 3

Contact details for a specialist neurologist? 60 67 41 3

Contact details for a specialist MS nurse? 67 74 35 2

Contact details for a specialist MS therapist? 16 18 87 6

Information on local MS support groups? 38 42 64 5

Information on national MS organisations? 49 54 54 3

An opportunity to attend an educational programme? 16 18 88 5


Written information about MS? 29 2 5 -

Contact details for a specialist neurologist? 86 6 1 -

Contact details for a specialist MS nurse? 71 5 2 -

Contact details for a specialist MS therapist? 14 1 6 -

Information on local MS support groups? 14 1 5 1

Information on national MS organisations? 29 2 5 -

An opportunity to attend an educational programme? 14 1 6 -

Key recommendation three: seamless services

”Every health commissioning organisation should ensure that all organisations in a local health area agree and publish protocols for sharing and transferring responsibility for and information about people with MS, so as to make the service seamless from the individual‟s perspective.”

Key messages:

66% of people with MS reported that the sharing of information between health

organisations made the transfer of care easy


26

59% percent of people felt that information sharing from Health to Social Services

made transfer of care difficult

These questions relate to the recommendation that the NHS should ensure 'seamless care'; i.e. referrals onto other services should be easy and should avoid repeating things. Consequently replying to this question was restricted to people who has indeed been referred between

organisations.

For England 52% (632/1220) had been referred between different health or social care organisations; for Wales this was 51% (41/80). Table 12: Information regarding transfer Did you feel that the referring person and the new organisation shared sufficient information to make the transfer easy for you:


From one hospital service to another e.g. physiotherapy to urology 66 419 132 81

From GP (or other local health professional) to hospital 73 464 94 74

From hospital or GP to Social Services 41 256 147 229

From hospital or GP to any other service 51 322 127 183


From one hospital service to another e.g. physiotherapy to urology 71 29 6 6

From GP (or other local health professional) to hospital 73 30 6 5

From hospital or GP to Social Services 54 22 5 14

From hospital or GP to any other service 63 26 5 10

Key recommendation four: involvement in clinical decisions

"All services and service personnel within the health care sector should recognise and respond to the varying and unique needs and expectations of each person with MS. The person with MS

should be actively involved in all decisions and actions."

Key messages:

Half (54%) of people felt that they had been involved in clinical decision making as much as they wanted

This question investigates whether people with MS felt that NHS staff had involved them in

clinical decisions on diagnosis and treatment.

Table 13: Involvement in decisions During your contact with NHS services, were you involved in decisions on tests, assessments, referrals, and treatments?*

ENGLAND % Yes N

Not at all / Less than I would have liked 46 563

As much as I wanted 54 649

WALES % Yes N

Not at all / Less than I would have liked 53 41

As much as I wanted 47 36

*11 persons did not give an answer


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Key recommendation five: sensitive but thorough assessment

”Health professionals in regular contact with people with MS should consider in a systematic way whether the person with MS has a „hidden‟ problem contributing to their clinical situation, such as fatigue, depression, cognitive impairment, impaired sexual function or reduced bladder

control.”

Key messages:

75% of people with MS thought that their initial assessment had been thorough, and the same proportion thought it had been carried out sensitively.

These questions aimed to establish whether health professionals undertook thorough

assessments in a sensitive manner.

Table 14: Sensitive but thorough assessment Considering when you were first seen about a problem relating to your MS:

ENGLAND % Yes Yes No NK Did the person or team do a thorough assessment, covering all the important areas?

66 810 295 115

Was the assessment carried out sensitively? 67 819 272 129

WALES % Yes Yes No NK Did the person or team do a thorough assessment, covering all the

important areas? 64 51 20 9

Was the assessment carried out sensitively? 68 54 20 6

Key recommendation six: self referral

”Every person with MS who has been seen by a specialist neurological or neurological

rehabilitation service should be informed about how to make contact with the service when he or she is no longer under regular treatment or review. The individual should be given guidance on when such contact is appropriate.”

Key messages:

Two thirds of people with MS felt able to refer themselves back to specialist

neurology services, but only one third (30%) felt that this was possible for specialist neurological rehabilitation services

These question whether people with MS who had been discharged (i.e. when no more

appointments or admissions are planned) from a specialist service could refer themselves back to the specialist MS services.


28

Table 15: Self-referral

If you need to, are you able to make contact directly with someone in the specialist service about a new problem:

ENGLAND % Yes Yes No NK Specialist neurology service 67 813 142 265

Specialist neurological rehabilitation service 30 364 183 673

WALES % Yes Yes No NK Specialist neurology service 72 58 7 15

Specialist neurological rehabilitation service 28 22 11 47

Sentinel marker: skin pressure ulcers

”The commissioning health organisation should require all health care services including community services: to report every pressure ulcer occurring in a person with MS, to

undertake and report an investigation into what could have been done to avoid its occurrence, to agree actions that should reduce the risk of the same situation leading to a pressure ulcer.”

Key messages:

69 people (6%) developed a skin pressure ulcer over the year preceding this

survey; only 37 were investigated by the NHS (as far as the person knew)

These questions related to the „sentinel marker‟ of good services, namely that the NHS should

investigate every new pressure ulcer, in order to reduce the number occurring.

Table 16: Skin pressure ulcers


Have you developed any pressure sores over the last 12 months? 6 69 1143 8

Was the cause investigated by someone from the health care team? 54 37 26 6


Have you developed any pressure sores over the last 12 months? 10 8 71 1

Was the cause investigated by someone from the health care team? 63 5 2 1

Optional information

Key messages:

Fatigue was troublesome to 92% of respondents, and affected daily activities for 1-2 hours each day in 69%

Walking difficulties were experienced by 86%; 75% used aids or support while walking

Transferring from bed to chair was possible independently in 84%

24% used wheelchairs indoors

72% of people had some bladder problems, with 56% experiencing incontinence and 13% using a catheter

67% of people had problems with pain and 72% of these had daily pain and 59% took daily analgesia (successfully in 58%)


29

The five top problems rated as the worst from the person‟s point of view were limited mobility (321), fatigue (193), pain (99), bladder problems (49) and poor balance (45); 56% felt these were well or moderately helped by the NHS

The questions in this section were aimed at obtaining more clinical information about

respondents in order to set the survey in a general context. Answering was optional but over 90% responded.

Fatigue Table 17: Fatigue

ENGLAND (N=1203 RESPONSES) % Yes N

Do you have any problems with fatigue (tiredness) from your MS? 92 1101/1203

Has fatigue affected your daily activities over the last four weeks? 88 967/1093

Has fatigue prevented you from doing things for more than 1-2 hours each day over the last four weeks?

69 755/1093

WALES (N=76 RESPONSES) % Yes N

Do you have any problems with fatigue (tiredness) from your MS? 92 70/76

Has fatigue affected your daily activities over the last four weeks? 90 62/69

Has fatigue prevented you from doing things for more than 1-2 hours

each day over the last four weeks? 74 51/69

Mobility

Table 18: Mobility

ENGLAND (N=1201 RESPONSES) % Yes N Do you have any problems with walking? 86 1033/1201 Do you use a walking aid (e.g. stick, frame) or a person or furniture and walls to help you walk on a regular basis?

75 763/1020

Do you use a wheelchair or scooter outdoors? 58 603/1031 Do you use a wheelchair indoors? 24 252/1029

Can you get out of bed into a chair on your own? 84 860/1028

Can you get about your home without help - by whatever means? 78 805/1031

WALES (N=76 RESPONSES) % Yes N Do you have any problems with walking? 84 64/76 Do you use a walking aid (e.g. stick, frame) or a person or furniture and walls to help you walk on a regular basis?

72 43/60

Do you use a wheelchair or scooter outdoors? 70 45/64 Do you use a wheelchair indoors? 32 20/63 Can you get out of bed into a chair on your own? 73 47/64 Can you get about your home without help - by whatever means? 67 43/64

Bladder

Table 19: Bladder


Do you have any problems with your bladder? 72 867/1199

Have you had any problem with incontinence (wetting yourself) over

the last four weeks? 56 481/858

Do you have a catheter in place permanently to empty your bladder? 13 109/866


Do you have any problems with your bladder? 74 56/76

Have you had any problem with incontinence (wetting yourself) over the last four weeks?

60 33/55

Do you have a catheter in place permanently to empty your bladder? 15 8/53


30

Pain

Table 20: Pain


Do you have any problems with pain from your MS? 67 802/1200

Is this pain present every day? 72 569/791

Do you take medication every day for this pain? 59 469/794

Is the pain controlled to your satisfaction? 58 458/785


Do you have any problems with pain from your MS? 68 53/78

Is this pain present every day? 71 37/52

Do you take medication every day for this pain? 58 30/52

Is the pain controlled to your satisfaction? 44 23/52

Most major concern People with MS were asked to describe (in free-text) what was the greatest problem they had with their MS – in terms of a particular symptom or difficulty. They were also asked how

successful they thought the NHS had been in helping with this problem. The table below lists the major concerns, the most frequent of which were to do with fatigue and mobility.

Table 21: Most major concern

Symptoms Persons

Fatigue 193

Mobility, walking 161

Mobility, other 160

Pain 99

Bladder & continence 49

Balance 45

Visual 39

spasticity/spasms 34

Motor control general 33

Sensory disturbance (not pain) 30

Being dependent on others 27

Motor control, leg 26

Acceptance/adjustment 19

variability/uncertainty 18

Bowel control/function 13

Work 13

Altered abilities 12

Frustration 12

“Everything” 10

Cognitive loss/function 9

Emotional problems 9

Motor control, arm 9

Health service availability 8

Speech 6

Vertigo/dizziness 6

Tremor 5

Unclassified 5

Epilepsy 2

Extended activities 2

Information lack 2

Sleep 2

Social life 2

Swallow 2

toilet use 2

Bathing 1

Breathing 1

Driving 1

Loss of confidence/esteem 1

Reduced/altered abilities 1

skin pressure ulcer 1


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Table 22: Most major concern – NHS success

How successful do you think that the NHS has been in helping you with this problem?


Very successful 10 119

Moderately; there may not be much more that can be done 46 541

Slightly; they did at least try something 29 336

Not at all; they have not really tried 15 181


Very successful 16 12

Moderately; there may not be much more that can be done 42 32

Slightly; they did at least try something 21 16

Not at all; they have not really tried 22 17


32

RESULTS – ORGANISATIONAL AUDIT OF NHS ORGANISATIONS

Key messages:

In England 82% of Trusts, 84% of PCTs, and 60% of SHAs participated

The proportions were lower in Wales

The first table shows the total number of organisations approached and the number who provided usable data. A few organisations registered but then did not complete the

questionnaire. Some of the Trusts initially approached made it obvious that they would not normally see anyone with MS (e.g. a hospital specialising in cardiac surgery), and they have not been included. The Health Commission Wales was contacted and it agreed that it was

responsible for specialist commissioning for MS services, but it did not provide any data.

Participants in organisational audit with analysable data:

Table 23: Participating sites

SHA/RO PCT / LHB Trust

ENGLAND

Approached (n=10) (n=150) (n=148)*

Analysed (n=6; 60%) (n=126; 84%) (n=122; 82%)*

WALES

Approached (n=3) (n=22) (n=9)*

Analysed (n=1; 33%) (n=14; 64%) (n=5; 55%)*

* excludes 10 from England and 3 from Wales that are served by the Walton NHS Trust (including the Walton

Centre for Neurology and Neurosurgery). The data returned from the Walton are described separately.

It is apparent that a majority of relevant organisations provided data for the audit. However a significant minority did not and the reasons for not doing so are not known. It is possible that

some Trusts did not care for anyone with multiple sclerosis, but this is unlikely as we excluded as far as we could specialist Trusts that focused only on non-neurological patients.

Four Strategic Health Authorities declined to participate; some stated that the subject matter of the audit was not within their remit; they did not acknowledge any role in monitoring the implementation of NICE guidance.

It is also apparent that a smaller proportion of organisations from Wales participated.

Managerial responsibility for services for people with MS

Key messages:

Less than half of all organisations (17% - 44%) had someone specifically responsible for services for people with MS

Nearly half (48%) of all provider Trusts did not have someone responsible for either MS services or the NSF

This question was asked to ascertain the level of interest the organisation had in MS

specifically and in long-term neurological conditions in general. This would also indicate, to a


33

minor extent, the likely validity of information provided; organisations without a specialised lead would be less likely to have readily available relevant information.

Table 24: Cross-tabulations MS & NSF responsibilities in Trusts

Long-term conditions NSF: Does your Trust / provider unit have

someone with managerial responsibility (i.e. within their job description or title) for services

No NK Yes

England minus Walton

Multiple sclerosis: Does your Trust / provider unit have someone with managerial responsibility (i.e. within their job description or title) for services

No 32 22 24

NK - 4 1

Yes 6 2 31

Wales minus Walton

Multiple sclerosis: Does your Trust / provider unit have someone with managerial responsibility (i.e. within their job description or title) for services

No - 3 -

Yes - 2 -

Table 25: Managerial responsibilities within Trusts Does your organisation have someone with managerial responsibility (i.e.

within their job description or title) for services in the following areas”

SHA / RO PCT / LHB Trust

ENGLAND % Yes N

% Yes* yes no NK

% Yes* yes no NK

Multiple sclerosis 17 1/6 44 55 59 12 32 39 78 5

Specialist neurology 17 1/6 46 58 56 12 73 89 30 3

Specialist neurological rehabilitation

17 1/6 60 75 38 13 52 63 51 8

Long-term conditions NSF 83 5/6 83 105 14 7 46 56 38 28

WALES % Yes N

% Yes* yes no NK

% Yes* yes no NK

Multiple sclerosis 0 0/1 7 1 13 - 40 2 3

Specialist neurology 0 0/1 14 2 12 80 4 1

Specialist neurological rehabilitation

0 0/1 7 1 12 1 60 3 2

Long-term conditions NSF 0 0/1 64 9 5 0 - - 5

WALTON

Multiple sclerosis: No

Spec Neurology: Yes Spec Neuro Rehab: Yes Long-term Cond NSF: Yes

* No and Not Known responses included in denominators

Specialised clinical time contracted specifically for people with multiple sclerosis

Key messages:

contracted professional time devoted to people with MS within organisations is low

providers contract more specific time than other organisations

This question was asked to gain an insight into the priority organisations gave to services specifically for people with MS.


34

Table 26: Clinical time devoted to multiple sclerosis In your organisation, how much specialised clinical time (defined in job plan or description) is devoted to

multiple sclerosis by your employed staff

PCT / LHB Trust

ENGLAND % N Median IQR % N Median IQR Doctors

(number of programmed activities)

22 26/119 2 1-5 62 72/116 2 1-4

Specialist nurses (WTE)

48 57/120 1 1-3 67 79/118 1 1-2

WALES % N Median IQR % N Values Doctors (number of

programmed activities)

0 0/13 - - 60 3/5 1, 7 and 9

Specialist

nurses (WTE) 0 0/13 - - 80 4/5 0.3, 2, 2.5 and 5.2

WALTON 14 consultant PAs, 3 WTE Nurse specialists

nurses

IQR Interquartile range PCT Primary Care Trust WTE Whole Time Equivalent

Process of performance monitoring/ commissioning services

Key messages:

Services are rarely commissioned using any data that might determine need for services by people with MS (6%) or even by people with long-term neurological conditions (15%)

Only a minority of commissioners plan to use formal needs assessments when

commissioning next year (MS, 6%; LTC, 25%)

patients are rarely involved in commissioning decisions or planning services

a significant proportion (30%-50%) of service commissioners also provide services directly to people with MS

This set of questions was asked to understand how the type of and number of services

commissioned or provided were determined by organisations. It was expected some form of independent assessment of need might be used.

It is striking that commissioning of services is not based on a formal needs assessment. Needs assessment at a broader level cannot possibly give any useful information when commissioning services for people with neurological problems in general or MS in particular. The low level of

committed plans to use formal needs assessment would suggest a low priority for commissioning services to meet actual clinical need.


35

Table 27: Formal needs assessment

SHA / RO PCT / LHB When monitoring PCTs / LHBs,

have you used a formal needs assessment for your

population?

Have you used a formal needs assessment for your population when commissioning services?

ENGLAND % Yes N % Yes N

Specifically for people with MS - 6 7

In line with the NSF-LTC 33 2 15 19

For neurology as a whole - 6 8

At a broader level 50 3 51 64

No 17 1 13 17

Not known - 9 11

WALES % Yes N % Yes N

Specifically for people with MS - -

In line with the NSF-LTC - 7 1

For neurology as a whole - -

At a broader level - 71 10

No 100 1 21 3

Not known - -

Table 28: Plans to use formal needs assessment next year

SHA / RO PCT / LHB*

Have you plans to use a formal needs assessment next year?

Have you plans to use a formal needs assessment when

commissioning services next year??

ENGLAND % Yes N % Yes N*





No 33 2 6 7

Not known - 10 12

WALES % Yes N % Yes N*





No 100 1 7 1

Not known - -

*Excludes those already using a formal needs assessment for their population when commissioning services

Only a minority of commissioning organisations involve patients with the process of commissioning even at the level of all neurological disease, let alone at the level of services for

people with MS where only 14% involve people with MS.


36

Table 29: Patient involvement

SHA / RO PCT / LHB

Do you monitor whether PCTs / LHBs involve patients in the process of commissioning

services?

Do you involve patients in the process of commissioning

services?






No 33 2 2 3

Not known - 6 7



In line with the NSF-LTC 100 1 -



No - 7 1

Not known - -

Although organisations that commission services should, in principle, be separate from those who provide services, some commissioning organisations also ran relevant provider services.

Fifty-four percent (68/126) of English PCTs and 29% (4/14) of Welsh LHBs had a unit or units providing services for people with multiple sclerosis, presumably in addition to other services provided by hospitals and acute Trusts. Four PCT provider units opted to complete the audit

and their data are included, but there is no additional information on the remaining 68 PCT provider services.

Acute Trust services

Key messages:

Only a minority (41%) of Trusts provided all necessary services from within their

own organisation

There are no specialist inpatient beds available to people with MS needing

neurology or neurological rehabilitation in over half of all acute Trusts

20% of Trusts do not provide any in- or out-patient neurological rehabilitation

services

Specialist medical and nursing time for people with MS is contractually specified in

61% and 64% of Trusts respectively, with 45% specifying physiotherapy time

The median actual amount of specialist time specifically contracted for people with

MS is 8 hours per week (doctors), this equates to two planned activities

A series of questions was asked to establish the extent to which a Trust provided services itself, and the extent to which other providers took on responsibility for service provision on behalf of or with the Trust.


37

Specialist services available/provided Service provision at the level of hospitals is actually very complex, with some Trusts providing

all services from within their own resources and others using other providers, especially for specialist neurological rehabilitation. Table 30: Specialist services available/provided

How do people attending your Trust with neurological problems receive:

Specialist neurological services

Specialist neurological rehabilitation services

ENGLAND % Yes N % Yes N Totally from within Trust provided services, in- and out-patients

39 47 41 50

Initially from within Trust services, but also transferring patients to a tertiary centre

34 42 35 43

From a visiting neurology (rehabilitation) service, with at least daily attendance

6 7 1 1

From a visiting neurology (rehabilitation) service, at least weekly attendance

14 17 2 3

By referral to another service or centre 7 9 20 25

WALES % Yes N % Yes N Totally from within Trust provided services, in- and out-patients

40 2 40 2

Initially from within Trust services, but also transferring patients to a tertiary centre

20 1 -

From a visiting neurology service, with at least

daily attendance - -

From a visiting neurology service, at least weekly attendance

40 2 60 3

By referral to another service or centre - -

WALTON

Totally from within

Trust provided services, in- and out-patients

Totally from within Trust

provided services, in- and out-patients

Designated specialist inpatient beds / outpatient clinics in Trust

Trusts had very few beds available for people with MS needing access to neurological or neurological rehabilitation services, the median being zero. For neurological rehabilitation the number of out-patient clinics was also very low (median = 0), but neurology out-patient clinics

were more available. Table 31 shows that specialist beds and clinics are rare in most hospitals.

Table 31: Specialist beds and clinics

Specialist neurological services Specialist neurological rehabilitation services

ENGLAND Median IQR N Median IQR N

In-patient beds 0 0-12 120 0 0-14 121

Out-patient clinics per week 8 3-14 121 0 0-3 119

WALES Median Range N Median Range N

In-patient beds 0 0-14 5 0 0-72 5

Out-patient clinics per week 3 2-20 5 0 0-4 5

WALTON

20 inpatient beds, 32 weekly clinics at the Walton Centre, plus 24

general clinics in English Trusts and 10 in Welsh Trusts. Also 4.25 Specialist MS clinics per week – 3

at the Walton Centre and 1 per week and 1 per month at two other

English Trusts.

16 inpatient beds, 3 clinics


38

How much specialised clinical time (defined in job plan or description) is devoted to multiple sclerosis?

Within hospitals there was a wide range of professions who have a part of their job specifically devoted to MS: occupational therapists, clinical (neuro)psychologists, orthoptists, dieticians, social workers, pain specialists, mental health nurses, continence nurses and counsellors.

However the majority of contractually specified clinical commitment applies to doctors, nurses and physiotherapists. Table 32: Specialised clinical time devoted to multiple sclerosis

Any clinical time If Yes

ENGLAND % Yes N Median IQR

Among doctors (planned activities = PAs) 61 72/118 2.0 1.0-4.0

Among nurses (PAs) 64 76/118 1.4 1.0-2.5

Among physiotherapists (PAs) 45 52/116 1.0 0.4-2.0

Among speech & language therapists (PAs) 19 22/116 0.5 0.3-1.0

Other professions* (unit = WTE) 27 32/117 1.0 0.4-2.0

WALES % Yes N Values

Among doctors (planned activities = PAs) 40 2/5 7 and 9

Among nurses (PAs) 60 3/5 0.3, 2.5 and 5.2

Among physiotherapists (PAs) 60 3/5 1.0, 1.5 and 2.0

Among speech & language therapists (PAs) 0 0/5

Other professions* (unit = WTE) 20 1/5 2.6

WALTON YES to all

except SLTs

14 doctor PAs, 3 nurses WTE, 1 physio WTE, 2.5

other WTE (OT, psychology, Orthoptist)


39

Key recommendation one: specialised services

"Specialised neurological and neurological rehabilitation services should be available to every person with MS when they need them usually when they develop any new symptom, sign, limitation on their activities or other problem, or when their circumstances change."

This recommendation has two components, the provision of services specialising in neurology (the diagnosis and treatment of the disease) and the provision of services specialising in

neurological rehabilitation (the diagnosis and management of disability and symptoms). The questions relating to neurological services are covered first.

For specialist neurological services

Key messages:

48% of service providers do provide a specialist service for people with MS, 37% provide a service for neurological problems.

Commissioning usually focuses on neurology (60%) not MS (14%)

Organisations rarely monitor whether the quantity of service provision is adequate,

and 60% of performance monitoring organisations do not even monitor the adequacy of neurology services in general

22% of Trusts in England have no plans to improve neurological services in the next year

Commissioners rarely (9%) monitor the performance of neurology service providers in relation to people with multiple sclerosis

These questions were asked to establish whether the NICE guideline was being executed

because without expert neurological services the quality of diagnosis and disease management (for example using disease modifying drugs) will be suboptimal. In principle every commissioning organisation should be commissioning a specialist MS service if only to deliver

disease modifying drugs through the Department of Health‟s „Risk sharing Scheme‟.


40

Table 33: Commissioning & provision


Do you specifically monitor whether PCTs/ LHBs commission such

services?

Do you commission specialist

neurological

services?

Do you specifically provide such services?

ENGLAND % Yes N % Yes N % Yes N Specifically for people with MS - 14 18 48 58 In line with the NSF-LTC 17 1 7 9 2 3 For neurology as a whole 17 1 60 76 37 45 At a broader level 50 3 9 11 5 6

No 17 1 4 5 7 8 Not known - 6 7 2 2

WALES % Yes N % Yes N % Yes N Specifically for people with MS - 7 1 20 1 In line with the NSF-LTC - - 20 1

For neurology as a whole - 21 3 20 1 At a broader level 100 1 14 2 20 1 No - 50 7 -

Not known - 7 1 20 1

WALTON Specifically for people

with MS

Table 34: Adequacy of service

SHA / RO* PCT / LHB* Trust*

Do you consider the adequacy of the

amount that PCTs / LHBs commission (e.g.

against needs assessment, waiting

lists etc)?

Do you monitor the adequacy of the

specialist neurological service that you commission (e.g. against needs

assessment, waiting lists etc)?

Do you monitor the adequacy of the amount that you

provide (e.g. against needs assessment,

waiting lists etc)?

ENGLAND % Yes N % Yes N % Yes N Specifically for people with MS - 11 12 32 37 In line with the NSF-LTC - 8 9 5 6

For neurology as a whole 40 2 49 56 35 40 At a broader level 60 3 25 29 4 5 No - 4 4 17 19 Not known 4 4 6 7

WALES % Yes N % Yes N % Yes N Specifically for people with MS - - 20 1

In line with the NSF-LTC - - 20 1 For neurology as a whole - 50 3 - At a broader level 100 1 33 2 - No - 17 1 20 1 Not known - - 40 2

WALTON For neurology as a

whole

*Excludes those who do not monitor, commission or provide a service and those for whom this is not known.


41

Table 35: Plans to improve services in the next year


Do you monitor whether PCTs / LHBs have specific plans to

improve the commissioning of such

services in the next year?

Do you have documented plans to

improve the

commissioning of specialist

neurological services in the next year?


improve the provision of such services in the

next year?

ENGLAND % Yes N % Yes N % Yes N Specifically for people with MS - 5 6 28 34

In line with the NSF-LTC 17 1 24 30 11 13 For neurology as a whole 33 2 27 34 29 35 At a broader level 33 2 13 17 1 1 No 17 1 18 23 22 27 Not known - 13 16 10 12

WALES % Yes N % Yes N % Yes N Specifically for people with MS - - 20 1 In line with the NSF-LTC - 7 1 -

For neurology as a whole - 7 1 - At a broader level 100 1 - - No - 79 11 40 2 Not known - 7 1 40 2

WALTON In line with the NSF-

LTC

Table 36: Monitoring the performance of providers (PCT / LHB only)

PCT / LHB*

Do you monitor the performance of providers of specialist neurological services?

ENGLAND % Yes N

Specifically for people with MS 9 10

In line with the NSF-LTC 11 13

For neurology as a whole 40 46

At a broader level 35 40

No 1 1

Not known 4 4

WALES % Yes N

Specifically for people with MS -

In line with the NSF-LTC -



No 17 1

Not known -

*Excludes those who do not commission a service and those for whom this is not known.


42

For specialist neurological rehabilitation services

Key messages:

Only 31% of providers have neurological rehabilitation services that follow NICE or

NSF-LTC standards

A minority (23%) of commissioners commission specialist neurological

rehabilitation services at the national standards (NICE/NSF)

A small minority of Trusts (13%) and commissioners (4%) check that rehabilitation

services are adequate for people with multiple sclerosis, and 80% of performance

managers do not monitor adequacy of commissioning of neurological rehabilitation even at the level of neurology as a whole.

Less than 20% of all organisations have any plans to improve rehabilitation service for people with multiple sclerosis in 2008-9 but 52% of commissioners and 36% of Trusts have some plans either to improve general neurological rehabilitation

services or to be in line with the NSF 17% of commissioners monitor service provision against the NSF; monitoring of

services at the level of people with MS is rare

The majority of the health care needed by people with multiple sclerosis over their lifetime will be for symptoms and disabilities that arise from the disease. This aspect of their care requires

a specialised neurological rehabilitation service; the needs cannot be met effectively by non-specialist rehabilitation services or by neurology services. These questions aimed to investigate the provision of this resource.

Table 37: Commissioning and provision of neurological rehabilitation services


Do you monitor whether PCTs/ LHBs

commission such services?

Do you specifically commission specialist

neurological rehabilitation

services?

Do you specifically

provide such services?

ENGLAND % Yes N % Yes N % Yes N Specifically for people with MS - 6 8 21 26 In line with the NSF-LTC 17 1 17 22 10 12 For neurology as a whole 17 1 49 62 34 42 At a broader level 50 3 13 17 11 13 No 17 1 6 7 20 25 Not known - 8 10 3 4

WALES % Yes N % Yes N % Yes N Specifically for people with MS - - 20 1 In line with the NSF-LTC - 7 1 - For neurology as a whole - 36 5 20 1

At a broader level 100 1 14 2 -

No - 36 5 20 1 Not known - 7 1 40 2


with MS


43

Table 38: Adequacy of service

SHA / RO* PCT / LHB* Trust*


amount that PCTs / LHBs commission (e.g.

against needs

assessment, waiting lists etc)?


specialist

neurological rehabilitation

services that you commission (e.g.

against needs assessment, waiting

lists etc)?

Do you monitor the

adequacy of the amount that you

provide (e.g. against needs assessment, waiting lists etc)?

ENGLAND % Yes N % Yes N % Yes N

Specifically for people with MS - 4 4 13 12

In line with the NSF-LTC 20 1 18 20 26 24

For neurology as a whole - 38 41 33 31

At a broader level 60 3 31 34 6 6

No 20 1 4 4 14 13

Not known 6 6 8 7

WALES % Yes N % Yes N % Yes N

Specifically for people with MS - - 50 1

In line with the NSF-LTC - - -

For neurology as a whole - 38 3 -


No - 13 1 50 1

Not known - - -


with MS

*Excludes those who do not monitor, commission or provide a service and those for whom this is not known


44

Table 39: Plans to improve services in the next year


Do you have monitor whether PCTs / LHBs have specific plans to

improve the commissioning of such

services in the next year?


improve the commissioning of

such services in the next year?


improve the provision of such services in the

next year?




For neurology as a whole 17 1 20 25 19 23


No 33 2 18 23 30 36

Not known - 14 18 19 23






No - 64 9 40 2

Not known - 21 3 40 2


with MS

Table 40: Monitoring the performance of providers (PCT / LHB only)

PCT / LHB*

Do you monitor the performance of providers of such services?

ENGLAND % Yes N

Specifically for people with MS 2 2

In line with the NSF-LTC 17 18



No 1 1

Not known 8 9

WALES % Yes N

Specifically for people with MS -

In line with the NSF-LTC -



No 13 1

Not known 13 1

*Excludes those who do not commission a service and those for whom this is not known.


45

Key recommendation two: rapid diagnosis

”An individual who is suspected of having MS should be referred to a specialist neurology service and seen rapidly within an audited time. The individual should be seen again after all investigations necessary to confirm or refute the diagnosis have been completed (also rapidly

within an audited time).”

Key messages:

Only 20% of Trusts and 8% of commissioners specifically consider the speed of finalizing a diagnosis of multiple sclerosis

Planning for improvement is mainly at the level of neurology in general, in 49% of providers and 18% of commissioners

In Wales one Trust is planning improvement but commissioners have no plans even for specialist neurological services

Over 60% of service providers give guidance to GPs on referrals to neurology in general, but a minority (18%) give specific guidance on referrals of people with (suspected) multiple sclerosis

These questions focus on the process of making the diagnosis. The recommendation concerns

the delays between a general practitioner or patient first suspecting that a person has multiple sclerosis and the final confirmation of the diagnosis. The new 18 week wait targets will

influence these delays, but NICE suggested that 12 weeks should be a maximum delay so the impact may be small. Table 41: Rapid access


Do you monitor whether your PCTs /

LHBs commission rapid

access (patient to be seen within 6 weeks) of

new referrals to specialist neurology

services?

Do you specifically commission rapid

access (patient to be seen within 6 weeks) of new referrals to specialist neurology

services?

Do you specifically provide rapid access

(patient to be seen within 6 weeks) of new referrals to specialist neurology services?






No 33 2 24 30 25 30

Not known - 18 22 2 3


Specifically for people with MS - - -

In line with the NSF-LTC - - 20 1

For neurology as a whole - - 20 1


No - 86 12 40 2



with MS


46

Table 42: Plans for increasing rapid access in next year

SHA / RO PCT / LHB* Trust*

Do you monitor whether your PCTs / LHBs have specific plans to increase

commissioning of rapid access to specialist

neurology services in the next year (if

patients wait more than 6 weeks)

Have documented plans to increase commissioning of

rapid access to specialist neurology services in the next year (if patients wait more than 6 weeks)

Have specific plans to increase provision of

rapid access to specialist neurology services in the next year (if patients wait

more than 6 weeks)

ENGLAND % Yes N % Yes N % Yes N Specifically for people with MS - 3 3 1 1 In line with the NSF-LTC 17 1 4 5 8 8 For neurology as a whole 17 1 18 21 49 47 At a broader level 50 3 18 21 2 2 No 17 1 33 38 29 28

Not known - 23 27 11 11

WALES % Yes N % Yes N % Yes N Specifically for people with MS - - 20 1 In line with the NSF-LTC - - - For neurology as a whole - 7 1 20 1 At a broader level 100 1 - -

No - 86 12 40 2 Not known - 7 1 20 1

WALTON Not applicable

*Those already with rapid access specifically for people with MS excluded

Team guidance for rapid referral

This question was added because general practitioners will only see a new case once or twice in their professional lifetime, and therefore need help in identifying who might have this disease and when it is appropriate to refer someone for an expert opinion, avoiding over-

referral as well as late referral. Table 43: Team guidance for rapid referral



LHBs ensure that primary care teams

have guidance on rapid referral of people to neurology services?

Ensure that primary care teams have guidance on rapid

referral of people to neurology services?

Do you ensure that primary care teams

have guidance on rapid

referral of people to neurology services?



In line with the NSF-LTC - 9 11 6 7



No 50 3 18 22 20 25

Not known - 26 33 9 11






No - 79 11 40 2



whole


47

Key recommendation three: seamless services

”Every health commissioning organisation should ensure that all organisations in a local health area agree and publish protocols for sharing and transferring responsibility for and information about people with MS, so as to make the service seamless from the individual‟s perspective.”

Key messages:

Protocols for transferring responsibility from service providers to other

organisations were present in no more than 47% (between hospitals) at least to the level of neurology as a whole, and no more than 20% specifically for people with multiple sclerosis

Commissioners had less interest in hospital transfers, and focused more on

transfers between secondary and primary care (35% to at least the level of

neurology); 67% of performance monitoring organisations were only concerned at a broader level

43% of Trusts and 52% of commissioners in England had plans to improve transfers between primary and secondary care to at least the level of neurology, with 38% of Trusts and 43% of commissioners making plans to the same level in

relation to Social Services

The majority of existing protocols and planned changes were general, and not

specific to multiple sclerosis

This recommendation concerns the transfer or sharing of responsibility across organisational

boundaries, both within Health and between Health and other organisations especially Social Services. The questions focus on written protocols, because the presence of documented procedures indicates that organisations are committed to the process.


48

Table 44: Co-ordinated care pathways across organisational boundaries


Do you check whether your PCTs /

LHBs monitor the

existence of co-ordinated care

pathways across organisational

boundaries between:

Do you monitor the existence of co-

ordinated care pathways across organisational

boundaries between:

Do you have co-ordinated care

pathways across organisational

boundaries between:

1. Health and Social Services? ENGLAND % Yes N % Yes N % Yes N Specifically for people with MS - 6 7 17 21

In line with the NSF-LTC - 13 17 8 10 For neurology as a whole - 6 8 9 11


No 33 2 25 31 39 48 Not known - 10 13 10 12



In line with the NSF-LTC - - 20 1 For neurology as a whole - - -


No - 36 5 40 2 Not known - 7 1 40 2

WALTON No

2. Different secondary care Health Organisations?






No 33 2 29 36 35 43

Not known - 17 22 9 11






No - 57 8 20 1



whole


49

3. Primary/secondary health care?






No 17 1 20 25 39 47

Not known - 10 13 8 10






No - 57 8 20 1



whole

Development of care pathways across boundaries over the next year Table 45: Development of care pathways over the next year


Do you have specific plans to request

from PCTs / LHBs or to facilitate the

development of care pathways across organisational

boundaries over the next year between:

Do you have documented plans to request or facilitate the development of

care pathways

across organisational boundaries over the next year between:


request or facilitate the development of care

pathways across

organisational boundaries over the next year between:

1. Health and Social Services?






No 33 2 17 21 36 44

Not known - 9 11 18 22


Specifically for people with MS - 7 1 -


For neurology as a whole - - -


No - 7 1 40 2


WALTON No


50

2. Different secondary care Health Organisations?






No 17 1 21 27 31 38

Not known - 11 14 16 19






No - 14 2 40 2


WALTON Not known

3. Primary/secondary health care?






No 17 1 11 14 30 37

Not known - 10 13 16 20






No - 7 1 20 1



with MS


51

Key recommendation four: a responsive service

"All services and service personnel within the health care sector should recognise and respond to the varying and unique needs and expectations of each person with MS. The person with MS should be actively involved in all decisions and actions."

Key messages:

A minority of providers (36%) provided and a small minority of commissioners

(9%) considered the whole range of services available for people with multiple sclerosis

50% of the performance monitoring organisations in England did not check on the range of service commissioning at all, at any level

34% of Trusts but only 5% of commissioners in England monitored the adequacy of services provided or commissioned

39% of providers had plans to reduce identified deficiencies in service provision for people with multiple sclerosis

Only 8% of commissioners planned to commission to reduce identified deficits, and no strategic health authority had plans to monitor the adequacy of service commissioning for people with multiple sclerosis

83% of service providers required staff to involve patients in clinical decisions but

29% of commissioners and 33% of performance monitoring organisations did not

ensure that this occurred, or did not know whether it did

A minority of providers (31%) and a small minority (12%) of commissioners

involved people with multiple sclerosis in the process of service development

Only 50% of SHAs involved people with neurological disease in service planning

The questions asked here investigate whether organisations focus on all the problems experienced by a patient, or only those that fit within an organisation‟s services (i.e. is the organisation patient-centred or service-centred?). Written documents were asked about

because they indicate commitment by the organisation.


52

Table 46: Specialist services needed by people with MS


Do you monitor whether your PCTs

commission the

whole range of services needed by people with MS, at

an adequate quantity (e.g. judged against a needs assessment or in other ways)?

Do you commission the whole range (e.g. spasticity

services, specialist wheelchairs) of

specialist services needed by people

with MS (e.g. against a needs assessment, or in other ways)?

Do you provide the whole range of

specialist services needed by people with

MS (e.g. against a

needs assessment, or in other ways)?






No 50 3 6 7 21 26

Not known - 12 15 2 3



In line with the NSF-LTC - 7 1 -



No - 43 6 20 1


WALTON - Specifically for people

with MS

Table 47: Adequacy of services needed by people with MS

PCT / LHB Trust

Do you monitor the adequacy (range and quantity) of services

needed by people with MS?

Do you monitor the adequacy (range and quantity) of

services needed by people

with MS within your organisation?


Specifically for people with MS 5 6 34 42


For neurology as a whole 17 22 20 25


No 15 19 28 34

Not known 11 14 7 9




For neurology as a whole 7 1 -

At a broader level 21 3 -

No 64 9 40 2

Not known 7 1 20 1

WALTON Specifically for people with MS


53

Table 48: Plans to improve range / availability of services, if deficient


Do you monitor whether your PCTs / LHBs have specific

plans in the next year to improve the

range and/or availability of services (if

deficiencies have been identified)?

Do you have documented plans in

the next year to improve the range

and/or availability of services (if

deficiencies have been identified)?

Do you have specific plans in the next year to improve the range and/or availability of

services (if deficiencies

have been identified) within your Trust?






No 33 2 13 17 16 20

Not known - 21 27 7 9






No - 57 8 40 2


WALTON No

Table 49: Patient involvement in clinical decisions


Do you monitor whether your PCTs / LHBs require service providers to involve patients in clinical

decisions?

In your commissioning

contract do you require service

providers to involve patients in clinical

decisions?

Do you require staff to involve patients in clinical decisions?






No 33 2 13 16 4 5

Not known - 17 21 5 6






No - 43 6 20 1 Not known - 14 2 40 2


with MS


54

Table 50: Formal mechanisms to involve people with MS in planned service developments



LHBs have formal

mechanisms to involve people with

MS in planned service

developments undertaken through

commissioning?

Do you have formal mechanisms to

involve people with MS in planned

service developments

undertaken through commissioning?

Do you have formal mechanisms to involve

people with MS in planned service

developments?






No 50 3 15 19 39 48

Not known - 12 15 8 10






No - 64 9 40 2



with MS

Key recommendation five: sensitive but thorough problem assessment

”Health professionals in regular contact with people with MS should consider in a systematic way whether the person with MS has a „hidden‟ problem contributing to their clinical situation,

such as fatigue, depression, cognitive impairment, impaired sexual function or reduced bladder control.”

Key messages:

No performance monitoring organisations monitored whether structured

assessment protocols were commissioned at any level

23%-25% of commissioners and 25%-35% of service providers commissioned or used structured assessment protocols specifically for people with multiple sclerosis for personal activities of daily living, cognition and mood

Few commissioners (11%) actually monitored whether service providers used

structured protocols

19% of providers and 8% of commissioners had plans to increase the use of

structured assessments for people with multiple sclerosis

The questions asked here investigate the organisational (cultural) approach to treating patients with respect while maintaining a high standard of care in terms of being thorough in their

assessment, often a difficult balance.


55

Table 51: Use of structured assessment protocols


Do you monitor whether your PCTs / LHBs require service

providers to use structured

assessment protocols to cover:

When commissioning services do you require service

providers to use structured


Do you use structured


1. Personal activities of daily living (ADL)?





At a broader level - 27 34 8 10

No 67 4 13 17 30 37

Not known 33 2 12 15 4 5






No - 43 6 60 3

Not known - 14 2 20 1


with MS

2. Cognitive functioning?






No 67 4 14 18 30 37

Not known 33 2 13 16 4 5






No - 43 6 80 4

Not known - 21 3 20 1


with MS


56

3. Mood disturbance?






No 67 4 17 21 32 39

Not known 33 2 13 17 4 5






No - 43 6 60 3

Not known - 21 3 20 1


with MS

Table 52: Performance of structured assessment protocols

SHA / RO PCT / LHB

Do you monitor whether your PCTs / LHBs monitor

performance of service providers in using structured

assessments?

Do you monitor performance of service providers in using

structured assessments?






No 83 5 40 51

Not known 17 1 13 17



In line with the NSF-LTC - -



No - 57 8

Not known - 21 3

WALTON


57

Table 53: Plans to increase use of structured assessments in next year


Do you monitor

whether your PCTs / LHBs have

documented plans for the next year to

increase use of structured

assessments by

service providers?

Do you have documented plans for the next year to


assessments by service providers?

Do you have documented plans for

the next year to


assessments?

ENGLAND % Yes N % Yes N % Yes N Specifically for people with MS 8 10 19 23 In line with the NSF-LTC - - 7 9 6 7 For neurology as a whole - - 6 7 8 10 At a broader level 50 3 15 19 3 4

No 33 2 41 52 48 59 Not known 17 1 23 29 16 19

WALES % Yes N % Yes N % Yes N Specifically for people with MS - 7 1 20 1 In line with the NSF-LTC - - - For neurology as a whole - - -

At a broader level - 21 3 - No - 50 7 60 3 Not known 100 1 21 3 20 1

WALTON No

Key recommendation six: self-referral after discharge

”Every person with MS who has been seen by a specialist neurological or neurological

rehabilitation service should be informed about how to make contact with the service when he or she is no longer under regular treatment or review. The individual should be given guidance on when such contact is appropriate.”

Key messages:

84% of Trusts and 60% of PCTs allowed self-referral back to specialist services at

any level, although the proportions were lower specifically in relation to people with multiple sclerosis (63% and 31% respectively).

Only 5% of providers (1/20) and 4% of commissioners (2/50) not currently allowing self-referral had plans to allow it next year.

Performance monitoring bodies did not monitor commissioning for this at any level

Only 12% of commissioners monitored the performance of service providers

against this criterion

These questions investigate whether the policy of self-referral by a patient back to expert services occurs and whether it is encouraged or enabled by commissioners.

42% of service providers and 13% of commissioners had plans to increase self-referral in the next year, only one of the 20 providers not allowing it now plans to change that situation and

only two of 50 commissioners not allowing it now plans to change that situation.


58

Table 54: Documented plans for self-referral – Providers

Do you have documented plans in the next year to

allow self-referral back to specialist services?

NK No At a

broader level

For neurology as a whole

In line with the NSF-LTC

Specifically for

people with MS

England minus Walton

Do you provide services for people with MS in a way that allows a patient to self-refer back to your specialist service?

Specifically for people with MS 2 21 3 1 1 49 In line with the NSF-LTC - 3 - 1 4 - For neurology as a whole 1 8 - 5 - 1 At a broader level - 2 - - - - No - 14 - - - 1 Not known 5 0 - - - -

Wales minus Walton

Do you provide services for people with MS in a way

that allows a patient to self-refer back to your specialist service?

Specifically for people with MS - - - - - 2

In line with the NSF-LTC - - - - - -

For neurology as a whole - 1 - - - -

At a broader level - - - - - -

No - 1 - - - -

Not known 1 - - - - -

Table 55: Documented plans for self-referral – Commissioners

Do you have documented plans in the next year to allow self-referral back to specialist services within

the commissioning process?

NK No At a

broader level



Specifically for

people with MS

England

Do you commission services for people with MS in a way that allows a patient to self-refer back to your specialist service?

Specifically for people with MS 6 12 2 2 2 15 In line with the NSF-LTC 1 - 2 - 4 - For neurology as a whole 2 6 1 3 1 - At a broader level 3 9 4 - - 1 No 1 22 - - - - Not known 21 4 1 - 1 -

Wales

Do you commission services for people with MS in a way that allows a patient to self-

refer back to your specialist service?

Specifically for people with MS - 1 - - - -

In line with the NSF-LTC - - - - - -

For neurology as a whole - - - 1 - -

At a broader level - - - - - -

No - 6 - - - -

Not known 5 1 - - - -


59

Table 56: Self-referral back to specialist services



LHBs commission

services for people with MS in a way

that allows a patient to refer him or

herself back to a specialist service?

Do you commission services for people with MS in a way

that allows a patient to self-refer back to

a specialist service?

Do you provide services for people

with MS in a way that allows a patient to self-

refer back to your

specialist service?


Specifically for people with MS - 31 39 63 77 In line with the NSF-LTC 17 1 6 7 7 8 For neurology as a whole - 10 13 12 15 At a broader level 13 17 2 2 No 83 5 18 23 12 15 Not known - 21 27 4 5


Specifically for people with MS - 7 1 40 2 In line with the NSF-LTC - - - For neurology as a whole - 7 1 20 1 At a broader level - - - No - 43 6 20 1

Not known 100 1 43 6 20 1


with MS

Table 57: Monitoring performance in responding to patient referral

SHA / RO PCT / LHB

Do you monitor whether your PCTs / LHBs monitor

performance of service providers in responding to

patient self-referral?

Do you monitor performance of service providers in

responding to patient self-referral?






No 83 5 50 63

Not known - 20 25



In line with the NSF-LTC - -


At a broader level - -

No - 71 10

Not known 100 1 21 3

WALTON


60

Table 58: Plans to allow self-referral in next year


Do you monitor whether your

PCTs / LHBs have specific plans in

the next year to allow self-referral back to specialist

services within the commissioning

process?

Do you have documented plans in the next year to

allow self-referral back to specialist

services within the commissioning

process?

Do you have documented plans

in the next year to allow self-referral back to specialist

services?

ENGLAND % Yes N % Yes N % Yes N Specifically for people with MS

- 13 16 42 51

In line with the NSF-LTC - 6 8 4 5 For neurology as a whole - 4 5 6 7 At a broader level 17 1 8 10 2 3 No 83 5 42 53 39 48

Not known - 27 34 7 8

WALES % Yes N % Yes N % Yes N Specifically for people with MS

- - 40 2

In line with the NSF-LTC - - - For neurology as a whole - 7 1 -

At a broader level - - - No - 57 8 40 2 Not known 100 1 36 5 20 1 52

WALTON Specifically for people with MS

5

Sentinel marker: pressure ulcers

”The commissioning health organisation should require all health care services including

community services: to report every pressure ulcer occurring in a person with MS, to undertake and report an investigation into what could have been done to avoid its occurrence, to agree actions that should reduce the risk of the same situation leading to a pressure ulcer.”

Key messages:

The occurrence of skin pressure ulcers was rarely monitored at the level of people

with MS (8%) and nearly half (48%) of all providers did not monitor the occurrence of skin pressure ulcers at all

34% of commissioners made no attempt to monitor the occurrence of skin pressure ulcers, and 84% of SHAs took no interest in skin pressure ulcers

The level of monitoring of the change in incidence rates of skin pressure ulcers was equally low, with 30% of Trusts not responding to changes in incidence rates

55% of commissioners and 42% of providers had plans to improve detection and monitoring of skin pressure ulcers at any level; MS specific plans were rare

This sentinel marker was intended to pick up systematic failures in care, and was chosen

because NHS organisations have been supposed to monitor skin pressure ulceration for some years. The questions investigate the attention given to skin pressure ulceration in general and in relation to people with MS.


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Table 59: Incidence of skin pressure ulceration


Do you monitor whether your PCTs / LHBs commission or

otherwise obtain reports on the

incidence of skin pressure ulceration in

your population?

Do you commission or otherwise obtain

reports on the incidence of skin

pressure ulceration in your population?

Do you audit (i.e. record, investigate and alter practice) the incidence of skin pressure

ulceration in your patient population?


Specifically for people

with MS - - 2 2 8 10


- - 3 4 5 6


- - 1 1 5 6


No 67 4 21 26 36 44

Not known 17 1 13 16 12 15


Specifically for people with MS

- - -


- - 20 1


- - -

At a broader level - 43 6 -

No 100 1 43 6 40 2

Not known - 14 2 40 2

WALTON NO

Table 60: Response to changes in incidence of skin pressure ulcers


Do you monitor whether your PCTs / LHBs actively monitor

and respond to changes in incidence

of skin pressure ulcers?

Do you actively monitor and respond

to changes in incidence of skin pressure ulcers?

Do you actively monitor and respond to changes

in incidence of skin pressure ulcers?


Specifically for people with MS - - 3 4 7 8

In line with the NSF-LTC - - 2 3 4 5

For neurology as a whole - - - 9 11


No 67 4 20 25 30 37

Not known 17 1 13 16 12 15






No 100 1 36 5 40 2

Not known - 21 3 40 2

WALTON No


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Table 61: Plans to monitor and reduce incidence of skin pressure ulcers


Do you monitor whether your PCTs / LHBs have specific plans for the next

year to monitor and reduce the incidence

of skin pressure ulcers?


the next year to

monitor and reduce the incidence of skin

pressure ulcers?


the next year to

monitor and reduce the incidence of skin pressure ulcers?


Specifically for people with MS - - 2 3 3 4

In line with the NSF-LTC - - 2 3 5 6

For neurology as a whole - - 2 3 3 4


No 67 4 24 30 35 43

Not known 17 1 20 25 22 27





At a broader level - 7 1 -

No 100 1 57 8 40 2

Not known - 29 4 60 3

WALTON No


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DISCUSSION

The majority of service providers generally report that they use national documents such as

the National Institute for Health and Clinical Excellence (NICE) clinical guideline and National Service Framework for Long Term (neurological) Conditions (NSF for LTC) to set service standards and policies. Commissioners are aware of such guidance, but report that they are

less likely to use disease specific guidance when commissioning services; they are using the NSF for LTC to a reasonable degree. The role of ensuring that adequate services are provided to the population as a whole is not held by anyone. The problems inherent in categorising

services as specialist or non-specialist and as for people with MS or not complicates matters. The continuing failure to monitor skin pressure ulceration is worrying, especially as 6% of the population surveyed had a new skin pressure ulcer in a twelve month period. However it is

pleasing to note that people with MS seemed reasonably satisfied with the NHS services they received.

Before considering the results in more detail, some methodological problems that complicate interpretation will be discussed.

Methodology – what is “specialist’’? The first, large problem is one that extends across the NHS and is not restricted to this particular audit – what defines a „specialist service‟, and how are such services commissioned

and provided? There is no set answer, but two approaches are possible.

One approach bases specialism on frequency; a disorder, condition, or procedure that is rare will (by this definition) require a specialist service. This is generally the approach used by the

Department of Health in relation to specialist commissioning. The services that are subject to specialist commissioning are for infrequent conditions. However even then a difficulty arises, for example, in relation to head injury (sometimes referred to as acquired brain injury); people

may have a head injury of any severity, and there is no obvious or practical way to draw a line in the resulting continuum. How are the „rare‟ patients to be separated from the remainder?

The alternative approach, which underlies the NICE guideline on MS, is to define specialism by the expertise and competence of the service; if a service has a particular expert skill and knowledge, then it is specialist in that area. Thus a specialist neurological rehabilitation

service (for example) is one that undertakes rehabilitation of people with neurological diseases but not other disorders (such as orthopaedic disorders).

In this audit it seems likely that most providers considered specialist in relation to expertise, whereas Strategic Health Authorities considered it in relation to specialist services as defined by the Department of Health. This was most obvious in Wales where the Health Commission

Wales stated that they were responsible for commissioning specialist MS services; some Local Health Boards similarly claimed not to be responsible.

This issue needs urgent resolution, not simply from the point of view of this audit. A person with MS admitted to a District Hospital with a relapse or a worsening associated with a urinary

tract infection, or some other condition arising from their MS wants and needs to be seen by a team that has expertise in MS and its management. Specialist services, as defined by the Department of Health, will rarely if ever be available to people with MS because the condition

is too common. Yet non-specialist services (as defined by expertise) have great difficulty in providing appropriate clinical care.

In this audit, it is impossible to know how any particular service or person interpreted questions on specialist services.


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Methodology – roles of organisations The second problem concerns the roles of various organisations.

There are some roles that are not acknowledged by any organisation yet which are vital for an effective service to a population. The most obvious is „performance management‟; ensuring

that the service provided by the NHS is of good quality and is sufficient to meet need. This role seemed to belong to Strategic Health Authorities (SHAs) and Regional Offices. Unfortunately four of ten SHAs did not respond but for those who did respond, the answers

suggest that they do not consider that they have any specific role in performance management of primary care trusts, or in ensuring that their population receives an appropriate quality and

range of service. Primary Care Trusts (as service commissioners) did not seem to use any needs assessment when commissioning, and so did not take on this responsibility either.

Therefore it is not at all clear who within the NHS is responsible for ensuring that people with MS do have access to and receive high quality services, meaning services that cover the whole range of their (health) needs that have appropriate expertise and are available in sufficient

quantity. Second, some organisations have several roles, most notably PCTs who not only commission

services but also provide primary health care services (general practices). Interestingly over half of PCTs also provided specialist secondary care services for people with MS.

This was unexpected, and complicates interpretation of our results. Some secondary care providers may have been missed. Further, we did not collect data from the specialist services run by primary care trusts and so we do not have any data on their quality. It may also be

difficult in future to make a direct comparison if we include this additional group of service providers (i.e. those run by PCTs).

Methodology – service organisation Our third problem arises from the varied and disparate nature of service delivery, with organisations providing a proportion of health care services to a proportion of patients with

varied formal or informal links with other organisations. For example a District Hospital might have a visiting neurology service provided by a Regional Centre, and patients might be admitted to the Regional Centre for investigation but to the District Hospital for most

treatments. A third organisation, such as a community-based rehabilitation service run by a Primary Care Trust might provide specialist rehabilitation in a hospital or simply in the community.

This made it difficult for some hospitals to respond accurately and fairly.

It is perhaps best illustrated by the situation around the Walton Centre in Liverpool. The Walton Centre has both a specialist neurology and a specialist neurological rehabilitation service, and has formal arrangements with eleven surrounding hospitals to provide these

services to neurology patients (including those with MS). However it is improbable that every person with MS needing immediate support from a

specialist service (e.g. if they have a relapse, or fall and injure themselves sufficient to require hospitalisation on account of their pre-existing disability) will be admitted to the Walton Centre, or seen by the Walton Centre teams within the first day or so. Consequently there is

only data concerning the specialist neurological and neurological rehabilitation services provided by the Walton Centre directly and on an out-reach and advisory basis and there is no

data on the services people with MS received when seen by other services within their local hospital.

Interestingly at least two of the hospitals also submitted data which differed from that provided by the Walton Centre, and which were not used. This indicates that they were also uncertain


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about the intent of the audit, and how it should be interpreted when an organisation provides some services to some people.

Therefore data provided to this audit are difficult to interpret because they may apply to all services provided within the boundaries of an organisation albeit by people from other

organisations, or simply to services provided by staff in the organisation within their own buildings, or to services provided in other settings.

The challenge is how to audit a diffuse network that has no formal existence (i.e. no management structure).

Finally the audit considered organisations only to have a single role (providing, commissioning, performance managing) but some organisations, especially primary care trusts, had at least

two roles. For example Strategic Health Authorities are supposed to commission specialist services (DoH definition) but did not take any responsibility for this, and several primary care trusts not only commissioned services also provided specialist rehabilitation services.

In summary, there are many problems arising from the way that services are or are not labelled, and from the fact that in practice services work together in informal networks. Audit

questions delivered to organisations fail to capture the complexity of actual service delivery, and both the local situation and local interpretation of the questions will have affected the answers given.

Strengths These weaknesses are countered by several strengths. The major strength of this audit is the

collection of data from all parties. This allows validation of results, or shows where there are marked inconsistencies. In general the data are remarkably consistent.

Secondly the audit is national, and the response rate was reasonable (with the exception of the Strategic Health Authorities). This will enable comparison in future, and makes the results resistant to the effects of ongoing organisational changes.

Third, the audit mechanism seems to have been well received, and allowed the collection of much qualitative data (i.e. the free text entries) which will add great detail to the results. Full

analysis of the qualitative data will take time and will be published separately. The sample of people with MS was not randomised across England and Wales – such a sample

could not possibly be obtained – but the data available suggest that it covered the spectrum of problems faced by people with MS who use NHS services. Thus, although it may not be statistically entirely representative it is sufficiently representative to allow conclusions to be

drawn. However the sample size both of people with MS and of organisations was not large enough to

allow valid comparisons between different areas of England, and even the comparison between England and Wales is not likely to be methodologically valid given the low response rate from organisations in Wales.

Moreover the large differences between the methods used in the initial 2005/6 audit and this audit do not allow any valid comparison over time.

Despite these difficulties, some contrasts will be drawn as possible pointers for further studies.

The results will now be discussed.


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Overall responsibility for service organisation and provision Two features emerged concerning Strategic Health Authorities and Regional Offices. Their rate

of participation was relatively low (six out of ten SHAs). Moreover the data from those who did participate suggest that SHAs do not feel any responsibility for monitoring the commissioning of or provision of clinical services for their population.

In practice it seems that SHAs are primarily concerned with the financial health and performance of the PCTs and Trusts within their area. They may have a role in commissioning

designated specialist services, but clearly services for people with MS were not perceived as specialist. The data suggested that SHAs did not particularly commission neurology services

either. At the same time it seems that neither PCTs nor SHAs use any formal assessment of

population need when considering services. It must be acknowledged that independent epidemiological information germane to the

provision of services for people with MS (and almost all other long-term neurological conditions) is almost completely absent. In addition existing NHS information systems are unfortunately unable to capture data relating to simple important questions such as the need

for specialist pain relief services, or urological and continence services, or even the rate at which new wheelchairs are needed by people with MS. Nonetheless it should be possible at least to estimate potential need and it should certainly be possible to investigate the extent of

unmet need. There does not appear to be any mechanism whereby the totality of service commissioning and

provision is monitored for its quality or quantity. Thus it is unclear how the NHS can be assured that it is meeting the needs of a population

(such as people with MS) if: No-one is monitoring the services provided at a population level No-one is using an independent estimate of need to plan or purchase services

Therefore, in order to assure that people with MS might receive an appropriate level and range of services, we recommend that:

Epidemiological research into the natural history of MS focused on impairments and activity limitations and service should be made a high priority

The NHS reconsiders the design and capability of its information systems so that use of

resources according to problems presented (and not exclusively disease diagnosis) can be recorded accurately

The NHS encourages the development of funded, formal networks focused on long-term

conditions so that there is a mechanism to collect and collate information about services in terms of their quality and quantity


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Data sources and data quality The response rate of over 80% from both PCTs and Trusts is high, especially given the

demands made of them by other supervisory bodies. The characteristics of non-responders are not known. However the sample was large and seems to be representative. The information from PCTs and Trusts should be generally applicable.

There are fewer Strategic Health Authorities and only 6/10 responded which makes this sample more prone to bias and uncertainty. Generalisation from the information gathered is much less

secure. Nonetheless it is unlikely that the remaining SHAs were better than those who did respond; the failure to respond suggests an even lower level of concern about monitoring the

provision of services. The data from organisations in Wales are especially difficult to interpret given the smaller

number of organisations, the lower response rate, and the existence of a fourth level (Health Commission Wales, who did not provide data despite indicating that they were responsible for specialist commissioning).

The sample of people with MS was of a reasonable size (1300) and encompassed people with a wide variety of difficulties and having problems of different degrees of severity. In the absence

of good epidemiological data on prevalent cases of MS, the sample should be considered reasonably representative of people with MS who use NHS services.

There were additional difficulties that arose from the lack of any clear organisational responsibility for services needed by people with MS in relation to problems arising from their MS, usually indirectly.

It was not always possible to determine whether a provider Trust would be expected to see people with MS. For example Mental Health Trusts were explicitly excluded on the grounds

that they would rarely be responsible for managing any aspect of the health of people with MS. However some Mental Health Trusts made contact because they did offer specific psychological support and services to people with MS. Other Trusts were contacted who stated that they did

not see anyone with MS; sometimes they actually meant that they did not have a neurology service, and they acknowledged offering physiotherapy etc.

It was also difficult to know who to contact when seeking information. There is no single role or post that is found in every organisation who would be expected to take responsibility for knowing about services. Although neurologists were the single biggest source of information

from Trusts (69/126), there was a huge range of named posts in PCTs, with no title occurring more than four times (Commissioning Manager and MS Specialist Nurse).

Trusts also found it difficult to think in terms of providing services to people with MS. They usually seemed to operate within a model of „specialist‟ named services. Thus they may have overlooked urological incontinence clinics and neuropathic pain clinics used by may people with

multiple sclerosis, and this difficulty has also probably affected the data provided. The data quality was high, in that the scope for transcription errors was removed by using a

web-based submission process (some patient forms were transcribed, but over 80% were directly entered).

Nonetheless, as is discussed elsewhere, there is ambiguity about how people interpreted, and responded to particular questions. It was and remains difficult to construct simple questions to

tease out answers about very complex services. On the other hand, the use of four separate data sources allowed some cross-validation, and

the information seems entirely consistent.


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Key recommendation one: specialised services It was notable that specialist neurological services were available to most people and in most

areas. This is to be expected. Indeed it was surprising that there were areas where specialist neurology services were not commissioned (according to the responses) because every person with MS who is eligible should have access to a specialist neurology service to obtain disease

modifying drugs (e.g. interferon beta). In contrast neurological rehabilitation services were only available to about 40% of the MS

population. This discrepancy between access to neurology and access to neurological rehabilitation was apparent in all answers (people with MS, Trusts, PCTs).

Thus we can draw a strong and valid conclusion that neurological rehabilitation

services are absent for the majority of the UK MS population. This is disturbing for two reasons:

1. For most people with multiple sclerosis it is the symptoms and disabilities that constitute

the greatest lifetime problems. Yet this aspect of their healthcare is not provided for at

all in many areas.

2. Second, there is good and increasing evidence that specialist neurological rehabilitation

services and the treatments and therapies involved benefit people with MS. Thus they are being deprived of access to effective health care.

Conclusion

It is recommended that the NHS should give a high priority to commissioning and providing neurological rehabilitation services in every locality (PCT

area)

Key recommendation two: rapid diagnosis The process of diagnosis seems to be reasonably rapid for about half of all people, but the time

taken is not within the 12 weeks suggested by the guideline. Indeed many people had delays greater than 20 weeks. The recently introduced 18 week wait initiative may help speed up this process.

It was also reassuring that a majority of recently diagnosed people were given some information about national support organisations, and were given contact details about

specialist nurses or doctors. Of more concern was the relatively infrequent provision of locally relevant information and support.

In conclusion there is scope for improving the process of diagnosis by increasing the provision of locally relevant information and support, but otherwise the process is already at least reasonable and likely to improve as waiting times are reduced in the whole NHS.

Key recommendation three: seamless service

The people with MS generally felt that transfer between health organisations was reasonable, but they were much less happy with transfers to Social Services. The reasons underlying this are not known.

Relevant written protocols were only present in about half of all Trusts, but many had plans to improve matters over the next year. In contrast commissioners had less interest in specifying


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or monitoring the existence and use of protocols aimed to improve transfer of clinical responsibility.

Conclusion

It is recommended that NHS organisations formally develop protocols for the

transfer of care from and to their organisation with all other organisations both within and outside Health. This need is recognised in the NSF for LTC.

Key recommendation four: a responsive service

This recommendation is in essence requiring services to be patient-centred (as does the NSF for LTC). To be patient-centred there must be:

an adequate amount of provision of each service to meet all need

an adequate range of services to meet the many different needs of patients involvement of the person with MS in all clinical decisions to the extent that each person

wishes

The difficulty in this audit was to know who was responsible for ensuring that there were adequate services across the range.

The results make it obvious that only a minority of Trusts provided a full range of services from within a single organisation.

At the same time, and more importantly, commissioners rarely specifically commissioned the whole range of specialist services needed.

Consequently in the great majority of places in England and Wales it is unlikely that a person with MS will be able to access, easily at least, all the specialist services they might need. In

some places trusts consider that they do have the full range within their own organisation (even though commissioners have not explicitly commissioned them in that way), and so the actual situation may not be as poor as the data suggest.

More optimistically many service providers were making plans to improve matters, though few commissioners were.

The commitment of service providers to patient involvement was high, but there was less explicit commitment at the level of service commissioning. People with MS, however, only felt

adequately involved in about half (54%) of all clinical decisions, which contrasts with the 83% of hospitals who stated that it was their policy to do this for neurological patients (but only 39% explicitly stated this intention in relation to people with MS).

The explicit involvement of people with MS in service planning and other management activities was also reasonable in service providers but low in commissioning organisations.

Conclusions:

We strongly recommend that NHS commissioning organisations should positively engage people with MS in the commissioning process in some way especially in

relation to the range of services commissioned and any service developments planned.

We also recommend that service provider organisations consider how to improve involvement of people with MS in clinical decisions made by staff about their care


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Key recommendation five: sensitive but thorough assessment

The only way to establish that assessments were thorough and sensitive was through asking about written policies or protocols, and only about 30% of service providers did this specifically for people with MS; commissioning organisations were unlikely to specify this detail in any

contract. Interestingly two thirds of people with MS thought that their assessment had been thorough

and sensitive, suggesting that the existence of written documents is certainly not essential to ensure good clinical practice.

One may conclude that clinical practice is probably at a reasonable standard despite the lack of written protocols.

Key recommendation six: self referral In the context of current NHS developments it was surprising that two-thirds of hospitals

allowed self-referral by people with MS and many were planning an increase. Moreover commissioners were also supportive in about 30% of instances. People with MS equally felt able to self-refer back to neurology.

The situation was not the same when referring back to neurological rehabilitation (presumably because there was no such service available).

On the other hand, very few of the organisations not currently supporting self-referral had any plans to do so.

Conclusion:

It is recommended that the organisation responsible for performance managing

PCTs and service commissioning should encourage commissioners to commission providers to allow self referral, especially to neurological rehabilitation services once they have been commissioned.

Sentinel marker: skin pressure ulcers

The rate of skin pressure ulceration in our sample of people with MS was high – 6%. However this may follow from the low priority given to skin pressure ulcers by all NHS organisations. It was notable that only half of service providers monitored skin pressure ulceration in any way

whatsoever, and that one-third of PCTs did not monitor skin pressure ulceration at all. NICE has stressed the importance of preventing and treating pressure ulcers in its Clinical

Guideline 29. The estimated cost of treating skin pressure ulcers amounts to an estimated 4% of the NHS budget.

The NICE clinical guideline also stresses the importance of commitment within organisations and by management:

There should be an integrated approach to the management of pressure ulcers with

a clear strategy and policy supported by management. Care should be delivered in a context of continuous quality improvement where

improvements to care following Guideline implementation are the subject of regular feedback and audit.

The low priority given to skin pressure ulceration by all organisations, and the high rate of skin pressure ulcers acquired over the preceding year by patients surveyed is of great concern.


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This was the sentinel marker of service quality for people with multiple sclerosis put forward by NICE. On the basis of our results one must conclude that NHS services for people with

multiple sclerosis are of a poor quality. The responsibility for this seems to be spread across all levels of NHS organisations – in England the SHAs, PCTs and the Trusts and in Wales the ROs, the LHBs, and the Trusts.

Conclusion:

It is strongly recommend that PCTs take a strong, proactive approach to the

detection of, investigation of and eventual prevention of skin pressure ulcers developing in their population; restricting this to people with MS may allow an effective but less costly approach in comparison with monitoring all skin pressure

ulcers.

Main conclusions and recommendations

This audit has covered the whole of England and Wales, and has covered all NHS organsations

that might be involved in the provision of healthcare to people with multiple sclerosis within the NHS. One important organisation was not involved – the Department of Health.

Various conclusions can be drawn from this audit:

1. The planning, development and management of services that can respond to the varied,

complex and changing problems experienced by people with multiple sclerosis is seriously impeded by the lack of an organisation that has explicit responsibility and the

necessary expertise to ensure that services with appropriate expertise are available to all people with MS when they need them. The lack of any organisation having overall responsibility also hinders the collection and collation of data that will allow a

comprehensive audit of service quality and the evidence needed to improve services.

The audit suggests that in practice services do form informal networks that cover many

aspects of care, but that these are not supported by a management structure, or collection of information about the network‟s activities, or formal protocols concerned with transfers of care between organisations.

2. The audit suggests that the NHS is not giving sufficient priority to specialist

rehabilitation services. Commissioners and providers have focused on specialist

neurological services and have yet to concern themselves with rehabilitation. However the major problems faced by patients are mostly concerned with rehabilitation and very few patients identified neurological problems as being their major concern.

3. The term „specialist service‟ is itself a additional source of confusion and difficulty. The

reality is that a person with MS who has a problem that is associated with (caused by)

their MS should be seen in a service that has expertise in MS, or has immediate access to such expertise. The majority of contacts with the NHS will be as a result of secondary problems, not problems that concern the diagnosis and treatment of the

underlying disease process (multiple sclerosis). Nonetheless the person‟s multiple sclerosis is the major factor that has to be considered in management and the service needs expert knowledge of MS and expert skills in the management of people with MS.

The audit was made more difficult by the varying interpretations placed upon the terms „services for people with MS‟ and „specialist services‟. Somehow service organisation

must recognise that people with MS often have particular needs when they present with a clinical problem secondary to the MS.


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4. Clinically the biggest concern is with skin pressure ulcers. A rate of 6% of people with

MS having skin pressure ulceration is unacceptable. However the real concern is the general lack of interest by all organisations in the problem of skin pressure ulcers. They are not monitored or investigated, and there are few plans to improve matters.

5. Two other areas of clinical practice raise some concern, and they relate to treating the

person with MS as an individual. Only half of all people with MS felt fully involved in

clinical decisions about their care. And it seems that newly diagnosed patients are not given information about local support available from voluntary organisations.


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The main recommendations that follow from this audit are:

All NHS

Organisations [unless they have no

involvement at all with people with MS or

services for them]

should have one specific person or role responsible for services

for people with long-term neurological conditions including multiple sclerosis (MS)

should involve people with MS in setting standards, in service

development and in commissioning

should have one specific person or role responsible for monitoring and reducing the rate of skin pressure ulceration

Commissioning Organisations

should commission specialist neurological rehabilitation services to enable every person with MS to have ready and rapid access

to these services

Acute Trusts/ Provider Units

should ensure that any person with MS in their care for whatever reason has timely access to an expert neurology

service and an expert neurological rehabilitation service.

Should ensure that health professionals engage people with multiple sclerosis fully in all clinical decisions

should give people with multiple sclerosis information about relevant local non-statutory services as well as national services

Department of Health

should review the organisational framework of the NHS so that one organisation becomes responsible for ensuring that the

population of people with MS in a defined area has access to services that can meet all of their clinical needs in a timely way, across the whole range of problems they face, managed in a

coordinated way, and with staff who have appropriate expertise.


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APPENDIX 1: NICE GUIDELINE KEY RECOMMENDATIONS AND SENTINEL

MARKER Key recommendation one: specialised services “Specialised neurological and neurological rehabilitation services should be available to every person with MS when they need them usually when they develop any new symptom, sign,

limitation on their activities or other problem, or when their circumstances change.” For this audit the following definitions were used.

Specialised neurological service A service within one organisation, contracted for as a unitary whole (for MS at least) and

including the following:

Consultant Neurologists with a special interest in MS (i.e. committed to seeing people

with MS as a significant part of their work) Consultant neuro-radiologists with direct access to an MRI scanner Access within the service to all specialist neurological investigations such as neuro-

physiology and neuropathology At least one nurse (or other health care professional) specialising in MS

In-patient beds with neurologically trained nurses able to admit patients acutely, after a relapse

Access to rehabilitation staff (physiotherapy, occupational therapy, speech and

language therapy, clinical psychology, social work) who have neurological training either within the service, or on a contractual basis but available throughout all working hours

Out-patient neurological services. Specialised neurological rehabilitation service

This definition is based on the guideline document. It is a service within one organisation, contracted for as a unitary whole (for MS at least), and including the following:

One Consultant in Neurological Rehabilitation, or a Consultant in Rehabilitation

Medicine who has a special interest in MS and with at least 50% of their contracted time being committed to seeing people with neurological disease

At least one nurse (or other health care professional) specialising in MS

In-patient beds with neurologically trained nurses able to admit patients acutely, after a relapse or for assessment

A full neurological rehabilitation team, including physiotherapy, occupational therapy,

speech and language therapy, clinical psychology, and social work. All staff should work exclusively with neurologically disabled patients, and there should be training specific to the needs of people with MS on a regular basis

Out-patient neurological rehabilitation services Direct and easy access to specialised other services especially ophthalmological (low

vision services) and urological services

A specific specialised interest in the management of: o Spasticity, including the use of botulinum toxin o Complex seating and postural and movement and handling needs

o Swallowing difficulties. Available when needed

The patient should be able to be in direct contact with and under the management of the service without undue delay or difficulty (see also the sixth recommendation on self-referral). Specific time frames cannot be given, but the patient should never need to be under the care

of any other less specialised service while waiting (i.e. once the referral is made, patients should be transferred directly from the referring location without an intermediate placement). The clinical need will determine what is an acceptable delay.


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Key recommendation two: rapid diagnosis “An individual who is suspected of having MS should be referred to a specialist neurology

service and seen rapidly within an audited time. The individual should be seen again after all investigations necessary to confirm or refute the diagnosis have been completed (also rapidly within an audited time).”

In making this recommendation the NICE guideline developers specifically did not define an appropriate time, but suggested that a six week delay was likely to be the maximum

acceptable in most circumstances. The definition of a specialist neurology service has already been given above.

Suspected of having MS This will be determined by the referring doctor, GP or hospital doctor, usually by specific

mention within the referring letter (or email or other communication). Rapidly within an audited time

As mentioned above, no specific time was set. However the recommendation requires the time between receipt of referral and the person being seen to be recorded, and to be reported to other people.

After all investigations ... completed This refers to the set of investigations ordered at the first consultation.

Key recommendation three: seamless services “Every health commissioning organisation should ensure that all organisations in a local health

area agree and publish protocols for sharing and transferring responsibility for and information about people with MS, so as to make the service seamless from the individual‟s perspective.”

Health commissioning organisation This refers to the PCT or consortium of PCTs that commission services.

All organisations The focus will be on the links between:

Within health

o Primary (GP services) and secondary care (hospital services) o Medical (doctor) services and para-medical (nursing and rehabilitation) services o Different specialist services with secondary care (e.g. neurology to neurological

rehabilitation if separate) Health (all) and Social Services, especially for ongoing support and care.

Local health area This will be geographically determined, usually being related to the traditional areas covered by the District General Hospital.

Published protocol This is a document that is available on request and/or is easily available on an Internet or

Intranet web page, with documents giving the web address. There must be dissemination of the document‟s existence if not of the document itself.

Key recommendation four: a responsive service “All services and service personnel within health care sector should recognise and respond to

the varying and unique needs and expectations of each person with MS. The person with MS should be actively involved in all decisions and actions.”


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The intention of this recommendation is to ensure that services tailor their response to the needs and expectations of the patient, rather than expecting the patient to fit the service(s).

It does not include ease of access (accessibility). Varying and unique needs

This refers to two features of people with multiple sclerosis (that in fact apply to all patients): each one has his or her own set of circumstances (pattern of impairments, family setting, previous history etc); and circumstances may change over time, if only as the disease

progresses.

Varying and unique expectations This refers to the patient‟s wishes, hopes and anticipated outcome which, as above, will not only be unique to that individual but may change over time.

Active involvement This has several components, all important. The first is being given appropriate information

about the situation. Next the person needs to be informed about the options available and their respective advantages and disadvantages. Third, the person should be encouraged to make choices where choices are available. Last, the person should be involved in any

treatment actively, for example monitoring the effects of the intervention. Key recommendation five: sensitive but thorough problem assessment

“Health professionals in regular contact with people with MS should consider in a systematic way whether the person with MS has a „hidden‟ problem contributing to their clinical situation, such as fatigue, depression, cognitive impairment, impaired sexual function or reduced bladder

control.” This recommendation is designed to ensure that all important (distressing and/or treatable)

problems are identified when a person with multiple sclerosis consults any service. It was also intended to ensure that this is achieved without causing undue distress to the person concerned.

Health professionals This refers to any person working within the NHS in a professional capacity.

Regular contact This refers to any person whose job is within a service and who sees people with MS more that

once/week, unless that person specifically is unlikely to see a person with MS. Systematic way

There should be a formal protocol or structured method for collecting information concerning common undetected impairments.

Key recommendation six: self-referral after discharge “Every person with MS who has been seen by a specialist neurological or neurological rehabilitation service should be informed about how to make contact with the service when he

or she is no longer under regular treatment or review. The individual should be given guidance on when such contact is appropriate.”

This recommendation concerns people who have no fixed further appointments with a specialist, a working definition of „discharge‟. It also only concerns specialist services.

Seen by The person has had at least one clinical contact. In practice this should be easily established

from hospital Patient Administration Systems (PAS).


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Make contact The person with MS should be able to make an appointment to be assessed by a member of

the specialist service, although the contact requested may be no more than a telephone contact in which case this would also be adequate.

Sentinel marker: pressure ulcers (standard seven) “The commissioning health organisation should require all health care services including community services:

to report every pressure ulcer occurring in a person with MS, to undertake and report an investigation into what could have been done to avoid its

occurrence, to agree actions that should reduce the risk of the same situation leading to a pressure

ulcer”

This recommendation was added because pressure ulceration was considered the most easily recorded, unambiguous, simple marker of an obviously bad clinical outcome for the patient.

Although not every pressure ulcer can be avoided, each one is worthy of investigation. Moreover the management of skin pressure ulceration is expensive to the Health Service [Grey et al, 2006].


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APPENDIX 2: MS AUDIT STEERING GROUP

Implementation Group

Derick Wade, Clinical Lead, Consultant and Professor in Neurological Rehabilitation

(Chair)

Oxford Centre for Enablement

Jonathan Potter, Clinical Director CEEU

Royal College of Physicians

Jane Ingham, Director Clinical Standards


Katharine Young, Project Manager CEEU


Chris Jones, Chief Executive

MS Trust

Nicola Russell, Director of Services

MS Trust

Steering Group

The Steering Group encompassed the Implementation Group with the following additions:

Grace Anjorin, MS Clinical Nurse Specialist

Barts and the London NHS Trust

Gavin Giovannoni, Professor of Neurology and Head of Academic Neurosciences


Sarah Joiner, patient representative

Bernie Porter, Nurse Consultant in MS

National Hospital for Neurology and Neurosurgery – UCLH Trust

Christine Singleton, Clinical Specialist Physiotherapist

West Midlands Rehabilitation Centre

Ben Turner, Consultant Neurologist


Graham Venables, Consultant Neurologist and Clinical Director Neurosciences

Sheffield Teaching Hospitals Foundation Trust

Other important contributors

Derek Lowe, Statistician


Linda Cuthbertson, Press and PR Manager


Alex Bird, Project Co-ordinator CEEU



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APPENDIX 3: PARTICIPATING ORGANISATIONS

Participating acute Trusts in England

Aintree University Hospitals NHS Foundation Trust

Airedale NHS Trust

Ashford & St Peter's Hospital NHS Trust

Barking Havering & Redbridge Hospitals NHS Trust

Barnet & Chase Farm Hospitals NHS Trust

Barts and The London NHS Trust

Basildon and Thurrock Uni Hsp NHS Foundation Trust

Basingstoke & North Hampshire NHS Foundation Trust

Bedford Hospital NHS Trust

Blackpool, Fylde & Wyre Hospitals NHS Trust

Bolton Hospitals NHS Trust

Bradford Teaching Hospitals NHS Foundation Trust

Brighton and Sussex University Hospitals NHS Trust

Bromley Hospitals NHS Trust

Buckinghamshire Hospitals NHS Trust

Calderdale & Huddersfield NHS Foundation Trust

Cambridge University Hosps NHS Foundation Trust

Cent Manchester/Manchester Chlds Univ Hosp NHST

Chelsea and Westminster Hosp NHS Foundation Trust

Chesterfield Royal Hospital NHS Foundation Trust

City Hospitals Sunderland NHS Foundation Trust

Countess of Chester Hospital NHS Foundation Trust

County Durham & Darlington NHS Foundation Trust

Dartford & Gravesham NHS Trust

Derby Hospitals NHS Foundation Trust

Ealing Hospital NHS Trust

East and North Hertfordshire NHS Trust

East Kent Hospitals NHS Trust

East Lancashire Hospitals NHS Trust

East Sussex Hospitals NHS Trust

Essex Rivers Healthcare NHS Trust

Gateshead Health NHS Foundation Trust

Gloucestershire Hospitals NHS Foundation Trust

Guy's and St Thomas' NHS Foundation Trust

Harrogate and District NHS Foundation Trust

Heatherwood & Wexham Park Hospitals NHS Trust

Hereford Hospitals NHS Trust

Hillingdon Hospital NHS Trust

Hinchingbrooke Health Care NHS Trust

Homerton University Hospital NHS Foundation Trust

Hull and East Yorkshire Hospitals NHS Trust

James Paget University Hosps NHS Foundation Trust

Kettering General Hospital NHS Trust

Kings College Hospital NHS Foundation Trust

Kingston Hospital NHS Trust

Lancashire Teaching Hospitals NHS Foundation Trust

Luton and Dunstable Hospital NHS Foundation Trust


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Medway NHS Trust

Mid Cheshire Hospitals

Mid Staffordshire General Hospitals NHS Trust

Mid Yorkshire Hospitals NHS Trust

Mid-Essex Hospital Services NHS Trust

Milton Keynes General NHS Trust

Norfolk and Norwich University Hospital NHS Trust

North Bristol NHS Trust

North Cheshire Hospitals NHS Trust

North Cumbria Acute Hospitals NHS Trust

North Middlesex University Hospital NHS Trust

North Tees & Hartlepool NHS Trust

Northampton General Hospital NHS Trust

Northern Devon Healthcare NHS Trust

Northern Lincolnshire & Goole Hospitals NHSFT

Northumbria Healthcare NHS Foundation Trust

Nottingham University Hospitals NHS Trust

Nuffield Orthopaedic Centre NHS Trust

Oxford Radcliffe Hospitals NHS Trust

Pennine Acute Hospitals NHS Trust

Peterborough & Stamford Hosps NHS Foundation Trust

Plymouth Hospitals NHS Trust

Poole Hospital NHS Trust

Portsmouth Hospitals NHS Trust

Queen Elizabeth Hospital NHS Trust

Queen Mary's Sidcup NHS Trust

Rotherham NHS Foundation Trust

Royal Berkshire NHS Foundation Trust

Royal Bournemouth & Christchurch Hospitals NHS Trust

Royal Cornwall Hospitals Trust

Royal Devon & Exeter NHS Foundation Trust

Royal Free Hampstead NHS Trust

Royal Liverpool & Broadgreen Univ Hospitals NHS Trust

Royal Surrey County Hospital NHS Trust

Royal United Hospital Bath NHS Trust

Royal West Sussex NHS Trust

Salford Royal NHS Foundation Trust

Salisbury NHS Foundation Trust

Sandwell & West Birmingham Hospitals NHS Trust

Scarborough & NE Yorks Healthcare NHS Trust

Sheffield Teaching Hospitals NHS Foundation Trust

Sherwood Forest Hospitals NHS Foundation Trust

South Devon Healthcare NHS Foundation Trust

South Downs Health NHS Trust

South Tees Hospitals NHS Trust

South Tyneside NHS Foundation Trust

Southampton University Hospitals NHS Trust

Southend University Hospital NHS Foundation Trust

Southport & Ormskirk Hospital NHS Trust

St George's Healthcare NHS Trust

St Helens & Knowsley Hospitals NHS Trust


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St Mary‟s NHS Trust

Stockport NHS Foundation Trust

Surrey & Sussex Healthcare NHS Trust

Tameside and Glossop Acute Services NHS Trust

Taunton & Somerset NHS Foundation Trust

The Dudley Group of Hospitals NHS Trust

The Leeds Teaching Hospitals NHS Trust

The Newcastle upon Tyne Hospitals NHSFT

The North West London Hospitals NHS Trust

The Princess Alexandra Hospital NHS Trust

The Queen Elizabeth Hospital King's Lynn NHS Trust

The Royal Wolverhampton Hospitals NHS Trust

The Shrewsbury & Telford Hospital NHS Trust

United Bristol Healthcare NHS Trust

United Lincolnshire Hospitals NHS Trust

University College London Hospitals NHSFT

University Hospital of North Staffs NHS Trust

University Hospital of South Manchester NHSFT

University Hospitals Coventry & Warwickshire NHST

University Hospitals of Leicester NHS Trust

University Hospitals of Morecambe Bay NHS Trust

Walsall Hospitals NHS Trust

Walton Centre Neurology & Neurosurgery NHS Trust

West Hertfordshire Hospitals NHS Trust

West Middlesex University Hospital NHS Trust

West Suffolk Hospital NHS Trust

Whipps Cross University Hospital NHS Trust

Wirral University Teaching Hospitals NHS Foundation Trust

Worcestershire Acute Hospitals NHS Trust

Worthing and Southlands Hospitals NHS Trust

Wrightington, Wigan & Leigh NHS Trust

Yeovil District Hospital NHS Foundation Trust

Participating acute Trusts in Wales

Cardiff and Vale NHS Trust

Conwy & Denbighshire NHS Trust

Gwent Healthcare NHS Trust

North East Wales NHS Trust

North Glamorgan NHS Trust

North West Wales NHS Trust

Pontypridd & Rhondda NHS Trust


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Participating Primary Care Trusts

Barnet Primary Care Trust

Barnsley Primary Care Trust

Bassetlaw Primary Care Trust

Bath & North East Somerset Primary Care Trust

Bedfordshire Primary Care Trust

Berkshire East Primary Care Trust

Bexley Primary Care Trust

Birmingham East and North Primary Care Trust

Blackburn with Darwen Primary Care Trust

Blackpool Primary Care Trust

Bolton Primary Care Trust

Bournemouth and Poole Primary Care Trust

Bradford and Airedale Teaching Primary Care Trust

Brent Teaching Primary Care Trust

Brighton & Hove City Primary Care Trust

Bristol Teaching Primary Care Trust

Buckinghamshire Primary Care Trust

Bury Primary Care Trust

Calderdale Primary Care Trust

Camden Primary Care Trust

Central and Eastern Cheshire Primary Care Trust

Central Lancashire Primary Care Trust

City and Hackney Teaching Primary Care Trust

Cornwall and Isles of Scilly Primary Care Trust

County Durham Primary Care Trust

Cumbria Primary Care Trust

Darlington Primary Care Trust

Derby City Primary Care Trust

Derbyshire County Primary Care Trust

Devon Primary Care Trust

Doncaster Primary Care Trust

Dorset Primary Care Trust

Dudley Primary Care Trust

Ealing Primary Care Trust

East and North Hertfordshire Primary Care Trust

East Lancashire Primary Care Trust

East Riding of Yorkshire Primary Care Trust

East Sussex Downs and Weald Primary Care Trust

Eastern and Coastal Kent PCT

Enfield Primary Care Trust

Gateshead Primary Care Trust

Gloucestershire Primary Care Trust

Great Yarmouth & Waveney PCT

Halton and St Helens Primary Care Trust

Hammersmith and Fulham Primary Care Trust

Hampshire Primary Care Trust

Harrow Primary Care Trust

Hartlepool Primary Care Trust

Hastings and Rother Primary Care Trust


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Havering Primary Care Trust

Herefordshire Primary Care Trust

West Hertfordshire Primary Care Trust

Heywood, Middleton & Rochdale Primary Care Trust

Hillingdon Primary Care Trust

Hounslow Primary Care Trust

Islington Primary Care Trust

Kensington & Chelsea Primary Care Trust

Kingston Primary Care Trust

Kirklees Primary Care Trust

Knowsley Primary Care Trust

Lambeth Primary Care Trust

Leeds Primary Care Trust

Leicester City Primary Care Trust

Leicestershire County and Rutland PCT

Lewisham Primary Care Trust

Lincolnshire Teaching Primary Care Trust

Liverpool Primary Care Trust

Luton Teaching Primary Care Trust

Manchester Primary Care Trust

Middlesbrough Primary Care Trust

Milton Keynes Primary Care Trust

Newcastle Primary Care Trust

Newham Primary Care Trust

Norfolk Primary Care Trust

North East Lincolnshire Primary Care Trust

North Lancashire Teaching Primary Care Trust

North Lincolnshire Primary Care Trust

North Somerset Primary Care Trust

North Staffordshire Primary Care Trust

North Tees Primary Care Trust

North Tyneside Primary Care Trust

North Yorkshire and York Primary Care Trust

Northamptonshire Teaching Primary Care Trust

Northumberland Care Trust

Nottingham City Primary Care Trust

Nottinghamshire County Teaching Primary Care Trust

Oldham Primary Care Trust

Oxfordshire Primary Care Trust

Peterborough Primary Care Trust

Plymouth Teaching Primary Care Trust

Portsmouth City Teaching Primary Care Trust

Redbridge Primary Care Trust

Redcar and Cleveland Primary Care Trust

Richmond & Twickenham Primary Care Trust

Sefton Primary Care Trust

Sheffield Primary Care Trust

Somerset Primary Care Trust

South Birmingham Primary Care Trust

South East Essex Primary Care Trust

South Gloucestershire Primary Care Trust


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South Staffordshire Primary Care Trust

South Tyneside Primary Care Trust

South West Essex Primary Care Trust

Southwark Health & Social Care PCT

Stockport Primary Care Trust

Suffolk Primary Care Trust

Sunderland Teaching Primary Care Trust

Surrey Primary Care Trust

Swindon Primary Care Trust

Tameside & Glossop Primary Care Trust

Telford & Wrekin Primary Care Trust

Torbay Care Trust

Tower Hamlets Primary Care Trust

Trafford Primary Care Trust

Wakefield District Primary Care Trust

Walsall Teaching Primary Care Trust

Waltham Forest Primary Care Trust

Wandsworth Teaching Primary Care Trust

West Kent Primary Care Trust

West Sussex Primary Care Trust

Westminster Primary Care Trust

Wiltshire Primary Care Trust

Worcestershire Primary Care Trust

Participating Primary Care provider units

Plymouth PCT Provider Services

Surrey PCT Provider Unit

East, North and West Hertfordshire PCTs Provider Unit

Camden PCT Provider Services

Participating Local Health Boards

Blaenau Gwent Local Health Board

Bridgend Local Health Board

Caerphilly Teaching Local Health Board

Cardiff Local Health Board

Carmarthenshire Local Health Board

Conwy Local Health Board

Denbighshire Local Health Board

Flintshire Local Health Board

Monmouthshire Local Health Board

Newport Local Health Board

Powys Local Health Board

Swansea Local Health Board

Torfaen Local Health Board

Wrexham Local Health Board

Participating Strategic Health Authorities

East Midlands Strategic Health Authority


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North East Strategic Health Authority

South East Coast Strategic Health Authority

South West Strategic Health Authority

West Midlands Strategic Health Authority

Yorkshire & The Humber Strategic Health Authority

Participating Regional Office

Mid & West Wales Regional Office

Sites served by the Walton Centre

Aintree University Hospitals NHS Foundation Trust

Bolton Hospitals

Conwy & Denbighshire NHS Trust

Countess of Chester Hospital NHS Foundation Trust

Mid Cheshire Hospitals

North Cheshire Hospitals NHS Trust

North East Wales NHS Trust

North West Wales NHS Trust

Royal Liverpool & Broadgreen Univ Hospitals NHS Trust

Southport & Ormskirk Hospital NHS Trust

St Helens & Knowsley Hospitals NHS Trust

Walton Centre Neurology & Neurosurgery NHS Trust

Wirral University Teaching Hospitals NHS Foundation Trust

National Audit of Services for People with Multiple Sclerosis ...

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