The Business Case · 2017. 8. 31. · 14. KLW opportunities and constraints – To be commissioned...

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Hospice in the Weald: The Cottage Hospice: Making it Real: Board Paper 21 April 2015: edit of 15 May 2015

Hospice in the Weald

The Cottage Hospice: Making it Real

The Business Case Paper to the HitW Board

21 April 2015

Prepared by Caroline Clark 14 April 2015 (amended May 2015)

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HitW Cottage Hospice: Making it Real Contents 1. Executive Summary 2. Introduction 3. Background: The Case for Cottage Hospices 4. Lessons from elsewhere 5. Strategic Information: Choice of Location, Site Criteria, Stakeholder Analysis 6. What should the Cottage Hospice offer and why 7. Design and day to day operation 8. Risk and Contingency 9. Finances: Capital & Revenue

9a. Budget assumptions 9b. Income generation opportunities 9c. HitW Cottage Hospice budget

10. Timetable 11. Evaluation Appendices 13. M E Cassam concepts – Briefed but report waited 14. KLW opportunities and constraints – To be commissioned 15. Oldfield Smith market intelligence – Underway but report awaited

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Section One: Executive Summary 1.1 Cottage Hospices are an innovative concept although researchers have actually spent the

last five to ten years researching and highlighting the flaws in palliative care in England, and hospices and others have been exploring the alternative ways in which care for patients who are deteriorating and then dying is being delivered. This very much includes carers and families being at the bedside and being involved in decision-making and care.

1.2 Cottage Hospices do not replace or duplicate existing services or departments. They provide

a different model which has a place on the spectrum between high-intensity care in hospital for people who need close medical attention and drugs and equipment and at the other end of the spectrum a non-medicalised death at home. Most hospices are relatively close to hospitals on the spectrum because they have evolved to provide specialist care.

1.3 The Cottage Hospice will take patients from HitH, HDS, its own Day Support Activities, from

local GPs and from hospitals. It will provide residential care for low complexity cases who have deteriorated and are now entering the dying phase. Also on the premises will be Day Support Activities for patients and their carers, families and friends and “Learning to Care” skills development courses for carers and families.

1.4 The evidence from recent research suggests that hospitals cannot cope with the forecasted

bulge in the numbers of deaths each year; that years of initiatives to improve palliative care in hospitals are making slow headway; that the Gold Standard will soon provide for 24/7 options and choices in personalised care packages; that patients expect a “good death” and their families and carers are distressed when they think a death has been a “bad death”; and that the ideal had mostly been characterised as a home death. Research shows however that about a third of those questioned in England would prefer to die in a hospice.

1.5 Alongside this research is a great deal of evidence that carers and families want to be

actively involved while their relative is ill and as they enter the dying phase. Distress is lasting when they feel they have not been able to obtain for their relative a good death. In working over the medium term (up to 1 year) with patients with terminal diagnoses and their carers and families, the Cottage Hospice will seek to prepare all those involved to play their chosen role. Case studies from round the country show the new types of accommodation hospices are offering to enable carers and families to remain at the bedside 24/7.

1.6 Not much headway has been achieved so far on the development of the capital aspects of

the HitW Cottage Hospice. Three locations are under exploration but there are planning sensitivities in the most likely town which make it preferable discreetly to investigate potential sites before debating the options with officers. Most of those looked at so far have existing buildings on them which would probably need to be taken down and replaced by a new build. An alternative is to convert a residential property on its own large site or seek a disused A3/A4 premises which could be converted. Initial findings suggest that £1m to £1.5m would be enough to purchase a site of over 1.5 acres, which the Cottage Hospice would need.

1.7 Extensive discussions with staff throughout the HitW structure have led to the creation of a

detailed and well-supported blueprint for the new Cottage Hospice, which is described here.

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Architectural consultants have been briefed to come up with sketches and preliminary drawings.

1.8 This report is able to give comprehensive details about what the new Cottage Hospice would

look like, who it would support, what services it would offer and what its core design features would be. On the basis of this, a detailed budget has also been prepared. This provides for two sizes of Cottage Hospice: one based on a ten-bed in patient unit and the other on a five-bed unit. The initial costings show an annual turnover for the first of £766k and for the second of £554k, with costs per bed per day of £234 or £337.

1.9 Attention has already turned to how HitW could raise additional income to pay for the

Cottage Hospice to add to the Continuing Care budget that patients would attract, which would raise between £150,000 and £300,000 per annum depending on the number of beds in the Hospice. The fundraising team is confident that it could raise income towards the purchase of much of the furniture and equipment needed to kit out the Cottage Hospice.

1.10 A timetable has been prepared showing that is would be feasible to open the new Cottage

Hospice by June 2016 if the Board are prepared to approve this Business Case and outline plan so far as it goes on 21st April, and if the site could be purchased by September 2015. It is being proposed that a Board task and finish working party is set up to supervise the further development of this plan.

1.11 It is also strongly suggested that an evaluation programme be devised and put in place as

early as possible to monitor this innovative project, devise success criteria, collect data and undertake a formative evaluation process as the project unfolds. This would enable HitW to learn from the pilot Cottage Hospice and assess whether and how to set up further local Cottage Hospices, and would also enable HitW to profile this ground-breaking project to the rest of the hospice movement as well as the broader health and social care professions.

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Section Two: Introduction The Scoping Document for this assignment said that the piece of work would lead to the product-ion of a “full and fully costed business case to enable HitW to move forward to the concept of Cottage Hospices. The assignment has been able to achieve its objective in one respect, which is that a fully developed concept is now in place that is grounded in extensive consultations with HitW staff and has been enthusiastically adopted by the majority as a good way to extend hospice services to a broader and larger cross-section of the community, and that this concept has been fleshed out, described, defined, scoped and costed. This has been done with the enthusiastic advice and support of the people who work at HitW. This paper gives a full description of the Cottage Hospice concept and who it would be for and how it would seek to operate. An evaluation process should be started as soon as possible to ensure that all the learning from the project is captured, both for the benefit of HitW and for the wider hospice movement. The aspect which remains under-developed is the capital side of the Cottage Hospice. The planning sensitivities in large parts of East Sussex mean that a discrete and softly-softly approach has had to be adopted and estate agents are instead being used to explore the potential market place. Several locations have been explored and several options have been put forward. But until one or more likely sites have been shortlisted, we cannot go very far in developing specifications for the Cottage Hospice. We do not even know yet whether it would be better to have a new build or to undertake a conversion – and opinions have shifted several times. Without sketches and plans, capital costs cannot be suggested. A further effect of this is that discussions with external stakeholders are still also at very preliminary stages. It is during the next phase that it is suggested a small working party including board members continues to work on this aspect of the plans.

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Section Three: The Case for Cottage Hospices 3.1 The case for Cottage Hospices is built on a number of fundamental contentions:

That people have powerful (but mostly unacknowledged) dreams and wishes about how they would like to meet their end and that as carers and family members, they are distressed if their loved ones do not have what they consider to be a “good death”.

That patients want their carers and families to be around them in the dying phase and to play an active role in caring for them, and that likewise, carers and families want to be near their loved one during the dying phase and to be able to play an active role in caring for the patient.

That carers can easily be disempowered by institutions – although this may generally be done inadvertently, accidentally, benignly or absent-mindedly rather than as a matter of policy – but that they are often distressed and anxious when they feel they do not have enough influence or power to intervene.

That a Cottage Hospice could be a suitable alternative for some patients to death in a hospital, a hospice, a care home or their own home.

3.2 The arguments in favour of the Cottage Hospice concept

Do not mean that a Cottage Hospice is superior or preferable to other places in which a patient might die: it may not be a suitable alternative for many people;

Do not mean that all carers and relatives wish to play a particularly active role in caring for their loved ones at the very ends of their lives, or that they are capable of undertaking such a role, and of course, some patients die alone without carers or family members in their lives;

Do not mean that all institutions get it wrong when delivering palliative care to people who are dying and that they necessarily disempower families and carers from being involved.

3.3 The Cottage Hospice gives people another choice to add to the range of choices available

about their place of death, and may indeed give some people a better option than the ones they could otherwise anticipate. The Cottage Hospice sits along a spectrum of choices with the other options to either side of it.

3.4 For some people – because of the nature of their illness and the severity of their symptoms –

hospital will be the most appropriate high-tech, intensive and highly-medicalised environment for them. Examples might be people who have had a major heart attack or stroke.

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3.5 For others, a hospice would be the most appropriate location. For patients with terminal cancer, for example, hospices have demonstrated that they can offer the necessary pain relief and 24/7 support.

3.6 For some patients – particularly those who have dementia, or who are elderly and alone in

the world – a care home would probably be the best option. 3.7 For many patients, home is considered to be the much preferred place of death, and if this is

possible, it may bring the most comfort to both patient and carer and family. However, home may not necessarily be the most suitable option in all circumstances – in the same way that hospitals and care homes are not necessarily the best places for all patients, and hospices do not suit everyone.

3.8 The Cottage Hospice is not intended to replicate the hospice offer (so HitW’s Cottage

Hospice will not offer the same facilities and services as are provided at Pembury) and its aim is to provide facilities for people who do not need the specialist drug regime and intensive medical care which are available in the In-Patient Unit at Pembury.

3.9 However, it may take into its residential facilities patients who have been cared for by

Hospice in the Home. Instances in which HitH patients might benefit from the Cottage Hospice include those cases when the home environment is not the right one, for whatever reason: perhaps the house is full of young people and children; the house is too small or run-down or is unsanitary; the washing, toileting and cooking facilities are unmanageable for carers and nurses; or the main carer cannot cope for reasons of their own health or disability. In many circumstances, the comfort and welfare of the patient is not best served in the home, and the HitH health care professional involved is seriously impeded when trying to deliver care.

3.10 In other instances, patients will be able to progress into a residential suite at the Cottage

Hospice on a planned basis, having been a user either of Day Support Activities at the Cottage Hospice or perhaps a user of Hospice Day Service at Pembury. It is also envisaged that nearby hospitals might discharge into the care of the Cottage Hospice people who are entering the dying phase on a ward but for whom the hospital can do no more than provide palliative care. Likewise, local GPs might recommend to carers and families that the Cottage Hospice nursing staff would be suitable care-givers for their loved one in their last weeks.

3.11 The main features of the service that will be offered by the Cottage Hospice are:

A residential unit for patients who are deteriorating to the extent that they are entering the dying phase but whose symptoms are classed as “low complexity” and who will spend two weeks or more as in-patients with care being co-provided by nursing staff and their carers and families;

A range of support measures provided over the medium term for patients and their carers and families in a warm, friendly, accessible Day Support centre by a mix of nursing staff and volunteers and focusing on their practical, social, physical, psychological and spiritual needs and their general well-being at a time when the patient is entering the terminal phase of their illness or condition;

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A ground-breaking “Learning to Care” centre which will take carers and families through a range of skills development and capacity-building sessions over a period of time in order to equip them to play an active role in the care of their terminally-ill relative, including the critical knowledge and the special skills and roles they can play during the dying phase of their loved one. One of the objectives of this service will be to prepare and equip the carer and family member to come into the residential unit at the same time as their relative and to co-provide nursing and personal care to the extent that they wish to do so at the bedside during the last days and hours of their loved one.

3.12 The three aspects of the service will be integrated with each other, with the aim that

Cottage Hospice personnel would sit alongside the family and friends during the terminal phase of the patient’s illness and would help them to tackle the issues as they arose over time. In the dying phase of the patient, he or she could be cared for in the Cottage Hospice, or if preferred, at home with the assistance of the HitH team.

3.13 The Cottage Hospice would also be available and welcoming to the carer and family after the

death of the patient, for example continuing to offer counselling, moral and practical support and bereavement care so that the sources of assistance for the family were not suddenly removed after the demise of the patient.

The Evidence Base for the Cottage Hospice Concept 3.14 All the literature points out that there will be a significant bulge (20%+) in the numbers of

people who die each year in this country as the baby boomers go to meet their maker over the next 20 years. There is also a broad consensus that the burden this will place on the health service will be difficult to fund alongside other growing demands. In Dying for Change Charles Leadbeater quotes findings from a NAO inspection of a Sheffield hospital in 2007 which showed that 40% of the people who had died in the hospital during a given period of time that year did not actually need to be in the hospital to have their medical condition treated. This is said to be a common phenomenon, to the frustration of doctors, hospital administrators and families themselves. It is now increasingly recognised that hospitals are not appropriate places for people to be unless they actively need treatment.

3.15 Although hospital staff are now far better educated about palliative care, an audit of 90% of

hospital trusts undertaken during 2013 by Marie Curie Cancer Care and The Royal College of Physicians revealed that four in five hospitals could give patients and families access to face to face palliative care services only during office hours. The audit questioned relatives about their experiences. Although they trusted the quality of the care offered by the hospitals, clearly the quality of communication was seriously at fault. One example of poor practice was that less than 50% of the patients who were capable of understanding were told that they were dying. Very small percentages were asked about their preferences for artificial hydration and nutrition and whether they wanted to see a priest. Medical personnel were far more likely to talk to relatives about these issues than they were to patients, but even so 25% of the families who were questioned felt that they had not been involved in decisions about their loved one’s care. (National Care of the Dying Audit for Hospitals, England: Executive Summary, published in May 2014, by The Royal College of Physicians and Marie Curie Cancer Care.)

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3.16 The results of an 18-month public consultation by Marie Curie and the James Lind Alliance

(Putting Patients, Carers and Clinicians at the Heart of Palliative and End of Care, January 2015, The Palliative and End of Life Care Priority Setting Partnership (PeolcPSP)) reported that the most important issue identified by the 1400 people consulted was, “What are the best ways of providing palliative care outside of working hours to avoid crises and help patients to stay in their place of choice”.

3.17 The Commons Health Select Committee report on End of Life Care, published in March 2015

gave recommendations and conclusions based on their review of the Liverpool Care Pathway, one of which was that “round the clock access to specialist palliative care in acute and community settings would greatly improve the way that people with life limiting conditions and their families and carers are treated”.

3.18 The month before that, a report commissioned by Health Minister Norman Lamb, “What’s

Important to Me: A Review of Choice in End of Life Care” gave the key recommendation that by 2019, every local area in England should have established a 24/7 end of life care plan for people who are being cared for outside hospital, with all of those who are eligible having a named senior clinician and a care co-ordinator allocated to them and having a fully interoperable electronic health record detailing their choices and preferences. In line with the NICE quality standard for end of life care, the care every person receives should be in line with their choices and preferences.

3.19 Meanwhile, HitW should look out for the results of a pilot which began in the middle of 2014

through which six hospitals and hospices will work as partners to ensure that terminally ill patients are removed from hospital wards to hospices or back into their own homes, whilst establishing an evidence base for the desirability of reducing the numbers of people dying in hospital. The government allocated £0.5m to the pilot projects involved. The results will be interesting for the Cottage Hospice.

3.20 The proliferation of recent research and the campaigning about dying in hospital illustrates

that a decade or more of research and feedback (including on the implementation of the Liverpool Care Pathway) now seems to be coming to a head in a flurry of recommendations about how patterns of palliative care can be improved for all patients.

3.21 In Difficult Conversations with Dying People and Their Families, published by Marie Curie

Cancer Care in January 2015, the writers of the report said there is a general and implicit understanding of what is a “good death” and it is usually associated with:

Being pain-free with pain control on tap, administered by experts

Being peaceful and calm accompanied by chosen persons and not alone

Having the role and emotional needs of carers and wider family recognised and respected

A feeling of control over the process

Privacy

Knowing what to expect and who does what

Being able to summon help 24/7

An appropriate level of physical and personal care that respects dignity

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Individuals accepting their diagnosis and being at peace 3.22 Conversely a “bad death” is associated with:

Poor or inadequate pain relief by those inexperienced in palliative care

Chaos

Being alone

Carers being in the dark and excluded from decisions

Feeling of a lack of control

Lack of privacy and dignity

Being in hospital (particularly in A&E)

A changing roster of staff particularly at night

Loss of dignity because of inadequate physical and personal care

The individual being in denial or fear or pain or misery 3.23 There was a general ideal of a death in “calm, peaceful, pain-free (environment) with care

from a team who were already familiar to the individual and their family”. Dying at home seems to be associated with privacy, calmness, peace, the attentiveness of those by the bedside and a lack of unwanted interventions.

3.24 However, respondents to the survey commented favourably on hospices and the way in

which they were perceived as the providers of emotional, spiritual, physical and medical support and of assistance to the whole family over a sustained period of time, and as capable of providing “an ideal combination of empathy and practical help throughout” – advice, counselling, complementary therapies, day care, respite care and equipment and medication.

3.25 Having said that, the orthodoxy is that most people would prefer to die and home, and this

is what a great number of surveys and qualitative research reports suggest is the case. For example the study ‘Local Preferences and Place of Death in Regions within England 2010’, Barbara Gomes, Natalie Calanzani, & Irene J Higginson (August 2011, Cicely Saunders Institute) reported that the majority of participants in their survey expressed a preference for dying at home. In the South East, 62% said that their preference would be to die at home, which was 1% under the national average. 32% said they preferred a hospice setting to the home setting, which was one of the highest regional percentages. These two preferences significantly outweighed the other potential choices.

3.26 The research looked at the varying patterns of preferences between people in seven age

bands, and discovered interesting variations between the age groups. For example, 73% of 16 to 24 year olds and 75% of 25 to 34 year olds said they would most prefer to die at home, compared with 56% of 65 to 74 year olds and 45% of those aged over 75. The researchers commented that the survey had enabled them to examine more closely those who were “potentially closer to the end of life” and “since older people are more aware of their mortality through illness, their views may be more accurately reflective than those of younger people.”

3.27 They also wondered whether people aged 75+ tended more towards hospices because they

were acutely worried about being a burden on their families and they thought this issue

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merited more investigation. Though they had not been able to single out respondents who had been diagnosed with a terminal illness or who had been identified as being frail, the study was able to identify participants who had been carers for a terminally ill person. The researchers commented, “It is also important to note that having cared for a close relative or friend in their last months of life affected significantly a hospice preference (increasing it), which suggests that knowledge and experience of services may inform choices.”

3.28 One of the pieces of research which is most interesting and significant for HitW and the

Cottage Hospice concept is a meta-study published in September 2012 by the National Institute for Health Research’s Service Delivery and Organisation Programme, Understanding Place of Death for Patients with Non-Malignant Conditions: A Systematic Literature Review undertaken by Dr Fliss Murtagh of the Cicely Saunders Institute at King’s College London and a large research team from four other research establishments.

3.29 The research looks at several national reports, international comparisons, disease-based

research studies and other large-scale statistical reports. In their conclusions, Murtagh et al comment that their “systematic literature review demonstrates clearly that there are major gaps in the evidence to inform policy and services in relation to end of life care for those with non-cancer conditions”.

3.30 They go on to say, “Practice is often extrapolated from models of cancer care, and these

may not be optimal. For example, the conception of home as preferred place of end of life care, with “open” awareness of approaching death and planning of health care to accommodate decline, is derived largely from cancer care, and (while very appropriate for some) may not accommodate the preferences of some of those with advanced non-cancer conditions, especially those who have a more unpredictable course of illness. It is also clear that those with advanced non-cancer conditions have complex and variable experiences, and widely differing preferences, which serves to emphasise the need for greater patient- and family-centeredness of care.”

3.31 The research team looked across the range of conditions and commented that:

Some diseases are very unpredictable and therefore sufferers find it difficult to time their efforts to plan their end-of-life care; they do not know if or when they might die and if that might be soon;

With other degenerative diseases, the path to the end of life can be very lengthy and gradual, and for these patients, planning needs to happen a long way in advance;

For patients with some conditions, hospital represents a safe haven which could offer them a better chance of survival;

Patients who know that their illness may be progressive but that they may take a long time to die (such as some dementia patients) fear that they will become a burden to their carer or family and they make advance plans to enter a care home setting at the end of life in order not to be a burden to others. Where spouses are both very aged or there are other reasons for co-morbidity, then they are unlikely to die at home.

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People who are single or divorced, and who have no informal carers, people who do not have further education attainments, people with low household incomes, those with lower socio-economic status and people from minority ethnic groups are all far more likely to die in hospitals or in care homes.

3.32 The researchers concluded that a great deal more investigation is needed to establish how

the “duration and trajectory of (non-malignant) illness affect transitions in place of care and place of death” before public policy is determined. Health and social care provision should not be shaped by reference to limited feedback from cancer patients on their preferences.

3.33 However, they were confident enough to state that, “The wish for home care was balanced

with the conditions that older people lived in. The studies showed that the ill person had to have someone who was willing and able to take on the caring role at home. It depended on whether the older people felt safe at home and whether they did not perceive their care as too heavy a burden for the informal carers. They preference for home care appeared to be less important than the goals of care that patients and families aimed to accomplish, consistent with the values they held.” In other words, the fate of the patient was very intertwined with the ability of the carers and the families to cope with their deterioration and death.

3.34 In “Difficult Conversations with Dying People and Their Families”, published by Marie Curie

Cancer Care in January 2015, the researchers highlighted their finding that healthcare and social care professionals can focus solely on the needs of the patient, and not on those of the carers and families, with the consequence in many cases that many bereaved people are left with an abiding sense of anxiety and guilt about whether they had done enough to help their relative. After the terminal diagnosis, carers reported that they often felt in the dark and “out of control” because they could not navigate their way around the system of care and support on offer to their relative. “Families repeatedly referred to the need for someone to help them navigate this complex health and social care system” particularly since “the dramatic change in the care team at the point when death is imminent” was so shocking and unsettling for everyone.

3.35 According to Professor Sheila Payne, Co-Director of the International Observatory on End of

Life Care at Lancaster University and lead author of an October 2014 report Managing End of Life Medications at Home: Accounts of Bereaved Family Carers, there are estimated to be about half a million people caring for family members at home who have a terminal illness.

3.36 She said that it had been shown that “Family carers are crucial to enabling older people to die at home if they wish to. Our study showed that they had a largely unrecognised and unsupported role in delivering medicines to people as they become more dependent. Most described this responsibility as demanding and stressful”. Pain management was one of the biggest worries of family carers. The report concluded that they were given too much responsibility for and too little advice about administering medication and that this led to hidden pressure on the carers.

3.37 The BMJ Publishing Group Ltd commented that, “The report detailed how family carers

reported anxiety about giving correct and timely dosages, and concerns about keeping the patient comfortable without overdosing them or risking shortening their lives. In particular

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they reported that certain analgesic medications, especially opioids, were considered to have a symbolic significance increasing analgesia requirements, and the use of a syringe driver was associated with deterioration and approaching death”.

3.38 A report from Marie Curie Cancer Care in March 2014 was based on a UK-wide survey of

1000 GPs, only 39% of whom thought their terminally ill patients got adequate access to care at night and at weekends and only 33% of whom believed these patients got adequate access to specialist palliative care nursing.

3.39 Simon Chapman, Director of Public and Parliamentary Engagement at the Dying Matters

Coalition commented in relation to the study that unless people have “around the clock access to pain relief and symptom control when they are dying at home….there is a huge risk they will be rushed into hospital as an emergency admission, which is not what they or anybody else wants and is very distressing. We must get rid of this concept of “out of hours” services. If we are putting the needs of dying people first, we would be talking about making sure they have the care and support they need at any hour or day of the week. “Out of hours” is completely provider-centric. Whose hours are you talking about? Certainly not the person who is dying.”

3.40 The organisation Dying Matters has an on-line search tool which gives advice to families and

carers about what to expect when someone is dying and their advice to people who will be staying with their loved ones in hospital for any length of time is indicative of the circumstances in which relatives could find themselves there:

be sure to take lots of breaks to relieve the stress

bring your own food because the snacks are dire and the canteen might be closed

bring in a thermos so you can have a hot drink when you need one

if your relative wants privacy, feel free to close their curtains

bring in your own pillow, blanket and bedroll

“let the nursing staff get on with their job of providing nursing care”

after the death be aware that nurses may be in and out dealing with necessary practicalities

3.41 There is are several research reports which cast a sidelight on the issues and problems which

could be resolved through the means of the Cottage Hospice concept, and it has been possible to give only selected highlights of some of these pieces of research. However, the findings which are given above hopefully go to demonstrate some of the advantages of the Cottage Hospice model and some of the ways in which HitW’s new initiative will deal with continued problems in palliative and end of care provision:

Hospitals will not be able to cope with the increased demands over the next 20 years;

Hospitals appear to find it difficult to learn about palliative and end of life care, particularly in the dying phase and to use this expertise in a consistent way across the whole hospital on a 24/7 basis;

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The very broad consensus is that there needs to be far more palliative care available, and available on a 24/7 basis so patients’ outcomes are not affected by crises and emergency decisions;

There is a move to ensure affected patients have end of life advanced care plans in place along with electronic health records so that their needs and preferences can be honoured;

A “good death” is assumed to be one at home on the basis of evidence from cancer sufferers, but people are increasingly happy to face the prospect of dying in a hospice instead;

Research increasingly shows the vital role played by carers and family at the end of life and in the dying phases. Marie Curie Cancer Care is one of the organisations which has highlighted the need for greater patient- and family-centeredness of care;

Research is starting to demonstrate the wide range of factors that come into play when people are making decisions about where to elect to die. These factors can be shifting and complex and dependent on circumstances which reinforces how early the task of planning end of life care needs to begin. Social, economic, educational, ethnic and demographic factors mean some people get a raw deal whereas others have more choice;

Anxiety, guilt, fear, shame, anger and feelings of being out of control can easily over-shadow and sadden the lives of carers. They can feel they have too much responsibility and not enough advice when they take on very demanding aspects of the care of the dying;

If carers and families and patients themselves want to be together in the dying phase, the system needs to provide better support and assistance for all of them. Suggesting that people might bring along their own thermos and bedroll is hardly the basis on which a patient-centric or carer-centric palliative care service should be run.

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Section Four: Lessons from Elsewhere

In this section, a range of examples from elsewhere are provided to show what could be possible for the new HitW Cottage Hospice, whether it re-purposes an existing building or builds new.

Examples of adding new components to existing sites Thorpe Hall Hospice Thorpe Hall Hospice just outside Peterborough was requisitioned for use as a hospital during the First and Second World Wars. It is a Grade I Listed mansion which was built in between 1650 and 1666. After World War Two, it was purchased by Lady Sue Ryder for use by her charity. It has been used as a hospice since the mid 1950s. The hospice has twenty beds, which are arranged over two floors in eight large shared rooms, which also have shared bathrooms. This is no longer considered to be desirable so an appeal was launched in 2014 to raise £6m to build a separate annexe in the orchard which will in the future house the patients.

The artist’s sketch to the left shows the planned annexe which will provide 20 single en-suite bedrooms, all on the ground floor with access to the gardens. By the time the appeal was launched, Thorpe Hall had already collected £1m towards its target of £6m. It gave itself two years of local fundraising and activities to raise the capital. This is an example of how a modern, fit-for-purpose facility can be grafted on to an older building on an existing site.

West Hall Care Home, Anchor Homes, West Byfleet, Surrey

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This is a second example of a residential facility which combines an attractive older building on a large building plot that has been retained and supplemented by modern annexes in the grounds which have been purpose-built for the current uses, which are as a care home for the elderly and for people with dementia.

The purpose built blocks have six single-occupancy en-suite rooms on each floor, each of which has either its own small patio or a balcony. Running alongside the residential rooms is a wide corridor incorporating zones for socialising, eating light meals, and engaging in shared activities – as if it was a street running alongside people’s front doors. Each block has its dedicated, specialist nursing and care team.

Woking Hospice, Surrey This is an entirely different approach to providing new hospice facilities. Woking Hospice was opened in 1996 and it took over the management of Sam Beare Hospice ten years later and relocated it onto the Weybridge Hospital campus. Uncertainty about the future of the premises led to the offer of a £6m loan from Woking Borough Council to convert a disused office block in a suburb called Goldsworthy Park into a brand new hospice. The three-storey 1970s block will be

converted to provide 20 en-suite in-patient bedrooms (each with a balcony), along with a day care centre, an education suite, an art and social zone with a café, counselling and therapy rooms, a physiotherapy gym and offices for the hospice administration team. Work is expected to begin in the very near future and will last for one year, with the official opening in spring 2016.

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Architect’s impression of one of the en-suite in patient rooms at the new Woking Hospice in a converted 1970s office block. This shows the potential for the re-use of a relatively modern building. With a fit-out, a building which once had a very different purpose can become new high-quality hospice accommodation.

Trinity Hospice, Clapham, South London Because of its building and its location, Trinity Hospice in South London is ideally placed to attract funding and support, including from a range of celebrity patrons. It sees 2000 patients a year in a catchment area of 750,000 people across a 20 mile-square radius of Central and South London. It does not only provide end-of-life care, but it also admits residential patients for symptom relief and for respite care. It also provides day care services, hospice in the home, education and training and a wide range of therapies. In March 2007, it launched a capital appeal for £10m to build a new two-storey in-patient ward with 28 bedrooms in a “pavilion style”, set in its own gardens.

All the rooms are set along a long, wide corridor, and each room has its own west-facing patio or balcony looking over a traditional London garden (albeit of the kind generally attached to large London mansion houses). The new wing attaches to the main part of the hospital (a grand early nineteenth century town-house) at the left of the picture. There is one shared room for three on each floor, but the others are singles. A detailed brochure for in house patients is provided on the hospice website, informing patients about all the facilities available and how the hospice is organised in terms of nursing, medical support, therapies, food, amenities and so on. Should relatives want to stay at the bedside, a second single bed would be put into the room for them. Pets are also welcome to visit.

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The photograph above shows one of the new en- suite rooms at Trinity Hospice. This photograph to the left shows the broad, connecting corridor which runs along the centre of the new wing at Trinity Hospice Clapham, showing the amount of light and the airy feel that can be achieved through good design. The corridor links the new facility to the Hospice’s main building.

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Douglas MacMillan Hospice, Stoke on Trent This 40 year old hospice was also set up by the founder of MacMillan Cancer Relief, but unlike the national charity, has remained a local facility on the fringes of the six towns which make up Stoke on Trent. The hospice was a 28-bed facility specifically set up for people in the terminal stages of cancer: recent expansions will take it up to 38 in-patient beds by the end of 2015. The chief executive readily admits that the “Community Lodges” which were commissioned in 2009 and finished in 2011 were built because of the availability of a grant from the Department of Health.

The three Lodges sit on the edge of the hospice site overlooking fields. They consist of three adjoining suites which resemble the kind of chalet available for rent on English and French activity parks. Each suite consists of a large living area incorporating kitchenette, dining table and chairs and sitting area with sofas, plus a pleasant bedroom with french doors leading onto a patio for the patient, plus an en-suite bathroom for the use of the whole family. Joining the three suites together and serving as a reception area for all the Lodges is a large oblong space which houses a nurses’ station, a nurses’ kitchen area and a comfortable sitting area with coffee tables and arm chairs. The building cost £500,000. It provides a very pleasant, attractive and clean facility.

The Lodges are used for both respite care and for end-of-life care. Relatives “can” stay overnight if they wish to do so, but the unit is permanently staffed so it is not necessary for patients to be accompanied. There is a limit on two relatives on overnight stays (however, in the rest of the hospice, visitors can stay overnight only by special permission and there are usually visiting hours, so the model of care is a rather old-fashioned one). The Lodges do not have any particular or special remit over and above that which applies to other in patient beds in the hospice. It is therefore difficult to see why some patients would get an upgrade to first class (so to speak) while others stayed in business class.

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Staff at the hospice say they would have made changes to the design had they been able to foresee the future. Most critical is the lack of storage space, including for drugs and patients’ belongings. Beds are not fully mobile and there is no piped oxygen supply. On reflection, mobile hoists are preferred to the static kind. The annual running cost of the Lodges is £142,000, but this is not a true reflection of the costs as some of the resources applied to the unit (such as food) come from the general hospice budget. Dorothy House Hospice, Bradford on Avon Internet searches have turned up another hospice which has introduced family suites, which is Dorothy House Foundation Ltd in Winsley in Bradford on Avon in Wiltshire. The “Community Lodges”, again in the grounds of the main hospice, are purpose-built and are to enable patients, their families and their carers “to remain together in a private home setting”. This can be for end-of-life care or for respite care.

Each lodge has two bedrooms, an open-plan lounge/kitchen and diner, fully-equipped bathrooms and a private patio area. They are built along an axis which allows one nurse station in the middle to have access to and supervise each suite. All the doors are aligned so there is a good line of sight along the run of rooms. The patient room is adjacent to the living area, but not to the family bedroom. This is because the patients are cared for by nursing staff and volunteers, rather than by families. In this way, the Dorothy House model is not what is envisaged at HitW’s Cottage Hospice. The lodges were completed a year ago in March 2014 after a six month building programme. They were part-funded by a £462,497 grant from the Department of Health. A virtual tour of the facility is possible from the hospice website. The hospice provides five week courses run by specialist nurses in subjects such as end of life and palliative care; communication skills at the end of life and in care situations; advance care planning; bereavement; symptom assessment and management; and syringe driver management. However, these are for fellow professionals, rather than for families.

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Montage of photos of family, guest and patient rooms at Dorothy House

The entrance to Dorothy House Hospice “Community Lodges”. Again, these appear to be an attempt to bridge one issue about hospice care – the ability of the family to stay with the patient at the very end of their lives – but without tackling one of the other issues, which is the direct involvement of the family in the care of the patient. It is not clear from this case study whether or not this is encouraged. As can be seen, there are now more and more instances of hospices setting up rooms so that families can also move in. But there is not much evidence so far of families taking over aspects of care.

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Section Five: Strategic Information on Location and Criteria

Overview 5.1 HitW has a catchment area of 400 square miles and within those geographical boundaries, a

community of 360,000. The catchment area covers part of Kent and part of East Sussex and as a result, HitW works within two county councils. As Royal Tunbridge Wells sits close to the Kent border with East Sussex, patients from the south have no difficulty recognising HitW as their local hospice, and indeed, one in five patients and their carers and families are based to the south in East Sussex with the other 80% coming from the home county of Kent.

5.2 Due to the recent health reorganisation, there is no longer a strategic health authority

covering the whole catchment area. HitW works across the geographical patches of two Clinical Commissioning Groups. The High Weald, Lewes and Havens CCG covers the area immediately to the south of Tunbridge Wells.

5.3 High Weald, Lewes and Havens CCG has a population of 164,570, making it one of the least

populous areas of Sussex, and the area is served by 22 GP practices. The CCG is taking a very community-based approach to the provision of health care and indications so far are that it intends to channel as many resources as possible through the smaller Cottage Hospitals on its patch. The concept of a Cottage Hospice would fit into its construct for secondary care and initial discussions (prior to this assignment) have shown that the CCG would be broadly receptive to the proposal.

5.4 The three settlements of Crowborough, Heathfield and Uckfield have been identified as the

most likely locations for the first Cottage Hospice. All are towns in which HitW is a well-known “brand” because of the location of its local shops.

5.5 The populations of the three parishes (as taken from East Sussex County Council online data)

are as follows:

Age Group All people Aged 0-15 Aged 16-29 Aged 30-44 Aged 45-64 Aged 65+

Parish

Crowborough 21,191 3,743 2,903 3,540 6,090 4,915

Heathfield & Waldron 11,911 2,019 1,581 1,901 3,543 2,867

Uckfield 14,757 2,800 2,138 2,827 4,180 2,812

5.6 The three settlements have advantages and disadvantages so far as the location of a Cottage

Hospice is concerned. Crowborough is the largest of the three in terms of population and also has a large, well-established and thriving town centre, which means the resources it could offer to the Cottage Hospice (in terms of supporters, volunteers and property) would probably be greater than those available in Heathfield and Uckfield. However, developments in Crowborough are severely constrained because of the long-standing strategic objective of protecting the ecology of the nearby Ashdown Forest which has and will lead to stringent planning constraints both in and around the town in the interests of controlling traffic.

5.7 On the other hand, although Uckfield and Heathfield are smaller settlements with smaller

town centres which are far less commercially successful, in both places are there substantial residential estates on the outskirts of the towns, in the case of Heathfield many of them

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retirement-only communities. These factors may mean a more substantial target market for Cottage Hospice services and potentially larger numbers of volunteers and supporters in the local community.

5.8 Because HitW intends to minimise the amount of space in the Cottage Hospice building

which is allocated to services, administration and core functions (with as far as possible these aspects of the business being run from Pembury) and because it is intended that the Cottage Hospice will be distinctively different from Pembury in the facilities it offers, it will be important for the Cottage Hospice to be within easy travelling distance of local GPs practices, Out of Hours GP services, a community pharmacy and a hospital amongst other amenities.

Local medical facilities: potential partner and contractors in the health sector in and around the three settlements

Beacon Surgery

Beacon Road

Crowborough, East Sussex TN6 1AH Extended hours

Heathfield Surgery

96-98 High St

Heathfield, East Sussex TN21 8JD

Meads Medical Centre

Uckfield, East Sussex TN22 2BQ

Brook Health Centre

Crowborough Hill

Crowborough TN6 2ED

Country Medical Centre

Spring Pastures

Punnett's Town

Heathfield, East Sussex TN21 9PE

Bird In Eye Surgery

Bird In Eye Surgery

Framfield Rd

Uckfield, East Sussex TN22 5AW

The Horder Centre

Saint John's Road

Crowborough TN6 1XP

Dr K Edwards

Punnetts Town Medical Centre

Battle Road

Heathfield TN21 9DH

Dr R Rajan

Newick Health Centre

Marbles Road

Newick, Lewes BN8 4LR Extended hours

Saxonbury House Medical Group

Croft Road

Crowborough TN6 1DL

Heathfield Community Health Centre

Sheepsetting La Heathfield TN21 0XG

Mid Downs Medical Practice

Marbles Road

Newick

Lewes BN8 4LR

Crowborough War Memorial Hospital

Southview Close

Crowborough TN6 1HB

Dr M H V Zutphen - the Firs Surgery

The Firs

Cross in Hand Heathfield, East Sussex TN21 0LT

The Buxted Medical Centre

Framfield Road

Buxted, East Sussex TN22 5FD

In house pharmacy

Chappells Pharmacy

1-3 Croft Road East Sussex,

Crowborough TN6 1DL

Manor Oak Surgery

Horebeech Lane Heathfield, East Sussex TN21 0DS

Uckfield Hospital

Uckfield

East Sussex

Tester and Jones Independent

Funeral Services

London Rd

Crowborough, East Sussex TN6 2TT

Dr C Merritt

High Street Burwash, East Sussex TN19 7EU

Selbys Hospital Pharmacy

Uckfield Community Hospital

Framfield Rd

Uckfield TN22 5AW

Paul Bysouth Funeral Services

9 Croft Road

Crowborough,

East Sussex TN6 1DL

Axell & Eames Funeral Services

64 High St

Heathfield,

East Sussex TN21 8JB

Cooper & Son Funeral Directors

Rose Cottage

Uckfield TN22 5DL Closed Sundays

Medhurst R

High St

Hartfield TN7 4AD

Heathfield Funeral Service

Hailsham Road

Heathfield

East Sussex TN21 8AB

Fuller & Scott Funeral Directors

The Wakelyns,

Civic Approach

Uckfield, East Sussex TN22 1AJ

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Closed Sundays

C. Waterhouse & Sons

Mabels Cottage

High Street

Burwash, Nr Etchingham,

East Sussex TN19 7ET

Richard Green Funeral Service

125 High St

Uckfield, East Sussex TN22 1RN Open 24 hours

Cooper & Son Funeral Directors

The Gables

Lewes Road

Cross-in-Hand,

East Sussex TN21 0SR

Brooks R A & Son

46 Allington Road

Newick Lewes BN8 4NB

5.9 For the last three months, sites in and around these three settlements have been identified

and given an initial assessment. This has largely been done in a low-key way via estate agents Oldfield Smith because it would be premature to bring the search into the open as yet.

5.10 Since the start of this process, it has been debated whether the Cottage Hospice should be

housed in a conversion of an old building, or in a new bespoke building, or in a combination of the two. Initially, because of the VAT regulations, the presumption was in favour of a conversion. However, as the VAT regulations are changing and as the strong consensus is that the ambience, design, layout and space standards of the Cottage Hospice are of paramount importance, so the idea of a new build has taken hold. There will also be sites with existing buildings which are worth keeping and converting into communal areas, which would be supplemented by one or more sympathetically-designed but more modern accommodation blocks. This has been done by many other healthcare facilities, one of which is West Hill Care Home in West Byfleet (whose pictures are among those in Section 4.)

5.11 One possibility is the re-use of redundant public buildings, such as old schools or medical

facilities. These are unlikely to be aesthetically pleasing on the outside, but may have good space standards inside as well as adequate space for plant. However, HitW is clear that its image and brand should not be confused by proximity to another health facility, so location would be a decisive factor.

5.12 The Cottage Hospice could also be based in a disused and converted private building. There

has been more than one suggestion that a redundant pub could provide a suitable location. Again, a particular pub in Crowborough has been identified as a possibility. Another option is to seek a large detached house with a large garden. The Cottage Hospice will require up to about 1.5 acres of land for gardens and parking. These are the potential sites that seem to be in the greatest supply, and cursory searches will show converted barns on substantial plots for under £600,000; large four bedroom houses on substantial plots for just over £1m; and five or six bedroom houses on plots of two or more acres for about £1.65m. The issues with such properties will be whether there is too much competition from developers to purchase them at a realistic price; whether the local authority would consent to a change of use; and whether there would be too many objections to and restrictions on the erection of supplementary accommodation blocks on the site.

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5.13 There are greenfield sites for sale in the vicinity of the three settlements. These show very attractive prices – but this is probably the consequence of covenants which put severe restrictions on their use. Although a clean and clear green site seems a hugely attractive option, it would have to be right on the fringes of one of the settlements (for accessibility); be the right shape for development (many are like haphazard jigsaw pieces); and not be controlled by ransom strips which do precisely as their name implies.

5.14 There may be sites available which are in industrial, commercial or agricultural use and

therefore already have buildings on them, whether they are in town or in the countryside around the towns. Light industrial units are plentiful but are at premium prices: they obviously bring in a good yield for the landlord. Extreme care would have to be taken with such a choice as there would be a high chance of having anti-social neighbours. Several sites with “large sheds” have also been located. One is a disused garden centre which seems to be affordable; a second is an old caravan site; another is a site with an assortment of retail, storage and small business units on it, again apparently available at a relatively low price. These seem to offer a certain amount of potential. The Cottage Hospice would need Class C2 permission. If a change of use is going to be necessary, HitW will need to take advice from local planning consultants about whether the local authority would be likely to agree to a change of use. On the one hand, a hospice would be regarded as a “good citizen”; on the other the loss of an office building or a house, or the prospect of more traffic, could militate against such permissions being granted.

5.15 As can be seen from the foregoing debate, HitW is still some distance from being able to

locate the ideal plot, negotiate its purchase for an affordable sum, and effect a sale. Until a decision can be reached on a plot, no ultimate decision can be made about whether the Cottage Hospice should be a new build, a conversion or a half-and-half. Of course, there is the risk of a chicken-and-egg situation developing, but HitW will have more options if decisions about the site can be made first.

5.16 Having said that, there will be some principles or criteria which must apply to the selection

of the site and the building of the Cottage Hospice. These include:

A site which offers (at least on one side) a peaceful, calm, quiet environment;

Strong protections for the amenities offered by the site in the medium term (for example, low chances of undesirable changes of use on adjoining sites)

A site which is in or near to a settlement to facilitate access by the community (including patients and their families and carers, volunteers and supporters);

A facility which will not be co-located with other organisations in such a way that its ownership and identity becomes confused with theirs;

On a site which benefits from the higher speed broadband connections to speed the introduction of 4G for the nursing staff (again, in town, on the edge of town, preferably on a hilltop);

Enough land for the building ideally to be one-storey only (to avoid the installation of a lift);

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Easily accessible by a significant local GP practice, out of hours GP practice and 24 hour pharmacy, as well as funeral directors, ambulance service and so on, and with a hospital in the vicinity;

The opportunity to use green and sustainable building methods and technologies without needing or wanting to work to untested or expensive “deep green” standards;

A location which would be welcomed by the key stakeholders. 5.17 From the initial searches, it would appear that £1m to £1.5m should be sufficient to

purchase a suitable site in the area and some sites could be available for as little as £600,000, depending on their current planning designation.

5.18 Because the majority of settlements in East Sussex are towns and small towns, suitable sites

which meet these criteria are not in abundance. It would seem sensible, therefore, to keep searching in and around all three locations for the site that offers the most ideal mix of circumstances, rather than confining the search to a smaller geographical area. It also makes sense for HitW to use suitable local or national estate agencies to do the leg work on its behalf and put forward potential sites as they come to light.

5.19 When suitable sites have been discovered, HitW should bring together a small panel of

advisors, including the estate agents, the planning consultant (KLW) and the architectural consultants (M E Cassam) to discuss the building and planning requirements and give their professional opinions on whether to invest further detailed land searches, in applications for change of use (which will most probably be necessary) and for outline planning permission.

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Section Six: What should the Cottage Hospice Offer and Why 6.1 Based on the background research, internal seminars at HitW and the business case outlined in

Section 3, there are a number of ethical, psychological, practical and financial reasons for the creation of a Cottage Hospice model of palliative care. Some of the reasons why a Cottage Hospice could be a good idea are:

the realisation that people with degenerative diseases and who are in the terminal stages of illnesses other than cancer are unlikely even to be referred so they can receive palliative care in a hospice.

the fact that three out of four hospitals in this country provide palliative care only during office hours, including MTW.

the fact that although 32% of people aged 75+ in the South East would prefer to die in a hospice, only 3% actually can

the realisation that hospital is by far the most common place for people to die even though it would be the least preferred place of death by 41% of respondents to a Help the Hospices report

reports about the fears and reservations of families and carers about their ability to take care of a relative in the terminal stages of an illness in the home

the evidence about children who are caused anxiety and distress because someone in their household is dying and they are both witnessing it and dealing with the consequences of having a primary care giver who is distracted from taking care of them

an illustrative case of a HitW Hospice in the Home nurse looking after a terminal patient who sleeps on a lower bunk bed who had to kneel on the floor and reach into a confined space to tend to him with the potential consequences for her own physical well-being

another illustrative case of a Hospice in the Home nurse who perched on a commode for 13 hours while looking after a patient because there was nowhere else to sit

a third illustrative case of a family who want to be as involved in the care of their loved one as possible, but although they cannot take on the responsibility at home, nevertheless feel a hospice setting is not where their loved one would most prefer to die.

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Who are the customers for the Cottage Hospice? 6.2 The Cottage Hospice is a model which effectively offers a half way house between the Hospice at

Pembury and the Hospice in the Home service. 6.3 At one end of the spectrum are patients who need sophisticated drug regimes and the close

attention of medical, nursing and therapies staff and who are therefore admitted either to hospital or to the IPU at Pembury to take advantage of the intensive support available there.

6.4 At the other end of the spectrum are people whose circumstances are such that they can be at home

or can go home to be looked after in their final days and who can be cared for by Hospice in the Home staff.

6.5 The Cottage Hospice is unlikely to divert patients for whom the IPU at Pembury is the right option.

However, it may provide services for patients who might otherwise use Hospice in the Home, for example:

People whose homes cannot provide a suitable environment because of their size, condition, lack of facilities, remoteness or other factors;

People who live in households where the demands are such that a peaceful, calm environment cannot be provided – for example, ones with several resident children;

People who are in higher age brackets and who are anxious not to be a burden on their families, particularly if there are several generations involved;

People whose carers cannot cope on their own with the demands involved by reason of their own age, abilities or infirmity.

6.6 The Cottage Hospice’s in-patients might also include:

People who are in the terminal stages of illness, cancer but also illnesses other than cancer, and who do not need complicated medication and doctor attention in the same way or to the same degree that in-patients at Pembury do;

People who are adamant that they must not be taken to hospital when their symptoms worsen;

Depending on medical advice, people who would otherwise be taken to hospital by ambulance crews at night or at weekends because of a lack of suitable medication in the home, the lack of availability of home-visiting nurses or the fears of the family or carer that they cannot cope with the symptoms that caused them to dial 999;

People who are in hospital and are understood to be at or close to the dying phase but for whom no further medical intervention is possible or useful and whose primary needs are calm, privacy and nursing care;

People who have been users of Hospice Day Services either at Pembury or at the new Cottage Hospital facility and who have worked with nurses there on a planned care package that includes palliative care on an in-patient basis in the last stages of their illness.

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6.7 Using the Patient Management Pathway to identify Cottage Hospice Customers In February 2015, HitW issued a Patient Management Pathway primarily for use in Hospice in the Home whose approach may also be useful internally in describing the intended users of the Cottage Hospice. This PMP uses analyses of the phase of the patient’s disease, its complexity and its effects on the patient to determine the course of action the nursing team should take. In the future, there will be patients for whom the Cottage Hospice is an appropriate choice: this by no means includes everyone. Step One of the process is to determine the phase of illness reached by the patient using the scale provided in Palliative Care Outcomes Collaboration (PCOC) by Masso M, Allingham SF, Banfield M et al in Palliative Care Phase: Inter-rate reliability and acceptability in a national study, in Palliative Medicine 2014.

Timing of Admission of Patient as Resident to Cottage Hospice BLUE / YELLOW: Patient first presents as user of Cottage Hospice day services but is not admitted YELLOW: Patient who is probably an existing user of day services is experiencing declining functions, worsening of existing problem(s) and / or family / carers are experiencing worsening distress impacting on patient care, which may lead to admittance RED: Patient is known already or is referred by health care professional because his or her death is likely within days

Step Two is to determine the complexity of the case

The candidate for admittance to the Cottage Hospice will not have complex symptoms or concerns but may now have complex social circumstances or family / carer issues

The Assessment Process All new patients are assessed by HitH or Cottage Hospice Day Services health care professional, depending on how they are referred to the Cottage Hospice and by whom. Stratification is confirmed after discussion with Clinical Excellence Lead or Senior Clinical Nurse Specialist. Letter to patient describes suitable services available to them from the Cottage Hospice at their current stratification and what to do if their condition deteriorates or if their family, carer and social circumstances become challenging.

PCOC Stratification of Phase of Illness BLUE = STABLE: Patient’s problems are adequately controlled by established plan of care and further interventions to maintain quality of life have been planned and family/carer situation is relatively stable and no new issues are apparent

GREEN = UNSTABLE: An urgent change in the plan of care or emergency treatment is required because the patient experiences a new problem that was not anticipated in the existing plan of care and/or the patient experiences a rapid increase in the severity of a current problem and/or family/carers’ circumstances change suddenly impacting on patient care

YELLOW = DETERIORATING: The care plan is addressing anticipated needs, but requires periodic review, because the patient’s overall functioning status is declining and the patient experiences a gradual worsening of existing problem(s) and/or the patient experiences a new, but anticipated, problem and/or the family/carer experience gradual worsening distress that impacts on the patient care

RED = DYING: Death is likely within days

HIGH COMPLEXITY = Difficult physical, psychological or spiritual symptoms or concerns or challenging social circumstances or family / carer concerns.

LOW COMPLEXITY = Stable or easily managed physical, psychological or spiritual symptoms or concerns. No challenging social circumstances or family / carer concerns

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Step Three is to describe the effect on the patient of his or her condition using the scores provided in the Australian Karnofsky Performance Status: AKPS Score (%) Description of Performance Status

100 Normal, no complaints, no evidence of disease

90 Able to carry on normal activity, minor signs or symptoms of disease

80 Normal activity with effort, some signs or symptoms of disease

70 Cares for self but unable to carry out normal activity or do active work

60 Able to care for most needs but requires occasional assistance

50 Considerable assistance and frequent medical care required

40 In bed for more than 50% of the time

30 Almost completely bed bound

20 Totally bed bound and requiring extensive nursing care by professional and/or family

10 Comatose or barely rousable, unable to care for self, requires equivalent of institutional care, disease may be progressing rapidly

0 Dead

Patients admitted to the Cottage Hospice would probably score between 10% and 30% on admission should the AKPS be a suitable functionality test for their condition. An alternative might be to use the Dalhousie University “Clinical Frailty Scale”, if this gave a better picture of their eligibility for admittance: patients may possibly be at 8 or would most probably be at 9 on this scale.

Score Level of Clinical Frailty

1 Very Fit: Robust, active, energetic and motivated. Exercising regularly. Among the fittest in the age group

2 Well: No active disease symptoms but less fit than category 1. Exercising or being active periodically

3 Managing Well: Any medical problems are well-controlled, but walking is only regular activity undertaken

4 Vulnerable: Symptoms limit activities though not dependent on daily help. Report tiredness and lack of energy

5 Mildly Frail: Evident slowing and need for assistance with more demanding tasks. Progressive impairment of independence

6 Moderately Frail: All outside activities and housework need help. Problems with stairs and with bathing. Possible need for a hand with clothing

7 Severely Frail: Completely dependent for personal care for physical or cognitive causes. However, stable and not at risk of dying within six months

8 Very Severely Frail: Completely dependent, approaching the end of life. Vulnerable to even a minor illness

9 Terminally Ill: Approaching the end of life. Completely dependent. Also applies to those diagnosed with less than six months to live, even if they are not otherwise evidently frail.

HitW currently characterises patients who use the Hospice Day Service as outlined in the box on the far left below, and patients who use the In Patient Unit as outlined in the box on the mid-left. The boxes on the mid right and far right provide outlines of patients who it is envisaged will use the Day Support Activities at the Cottage Hospice and the Residential Rooms, respectively

Hospice Day Service Stable and low complexity deteriorating patients may be appropriate. Deteriorating patients with high complexity may need to be shared care with HitH. Before commitments are made to a programme of care, assessments will be made.

In-Patient Unit Stable patients likely to be appropriate for emergency respite admission only. Unstable, deteriorating patients with high complexity and dying patients can be presented for admission. Restratification of patients just prior to discharge so that on-going HDS or HitH input can be planned

Day Support Activities Stable and low complexity patients use services initially along with carers and families. Low complexity deteriorating or unstable patients may also attend. High complexity cases are eligible only when the issues lie with families and carers with a knock-on impact on the patient.

Residential Rooms Deteriorating and dying patients can be admitted as long as their own symptoms and concerns are low complexity. Any highly complex cases occur amongst the carers and families of the patients. High complexity patients are referred on to the In Patient Unit

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It is not intended that the Cottage Hospice would be a satellite of Pembury, nor will the patients – particularly the in-patients – be replicas of those who go to Pembury. The Cottage Hospice is a different model for a different set of users, and therefore its residential rooms will look and feel different, and its day time activities will develop in their own direction.

What does the Cottage Hospice Look Like? 6.8 The Cottage Hospice is a place which offers support and hands-on assistance to people who need

palliative care and their families and carers all day and all night, 365 days a year. There are three key components of the Cottage Hospice:

1. A residential patient unit for between five and ten patients and their families at a time; 2. Day Support Activities which provide support and care for patients and their families within an agreed geographical catchment area and which aim to work with patients, their carers and families to meet their physical, practical, spiritual, psychological and emotional needs and take care of their general well-being in the 12 months prior to a potential admission of the patient to a residential room in the residential unit; 3. A ‘Learning to Care’ capacity building and skills development unit whose primary objective is to work with families and carers in the lead-up to the death of the patient (in the Cottage Hospice, at home or at Pembury IPU) in order to prepare those carers in terms of their knowledge, skills, hands-on competences and psychological and emotional preparedness to play an active role at the bedside of the patient, but which might also branch out into providing training in palliative care to other professionals.

6.9 The primary aim of the Cottage Hospice is to co-provide in-patient care for people in the last days of

their lives hand-in-hand with their main carers and other members of their families. However, The Cottage Hospice should also include the two other key components of the Day Support Activities and the capacity building facility in order to:

broaden the overall numbers of beneficiaries of the Cottage Hospice (which was an objective strongly advocated by HITW staff);

build the confidence and capabilities of relatives and main carers to contribute as fully as possible to nursing and personal care at the bedside;

contribute to the objective of providing a less costly, less medicalised, less institutionalised version of hospice care;

act as a recruitment vehicle for prospective new patients for the residential rooms;

cross-fund the provision of care in the residential rooms; and help to

forge relationships with GP Practices and other Care Services in the area for mutual benefit (support for Cottage Hospice provision and for broader local palliative and end of life care provision

6.10 These will also help to embed the new Cottage Hospice in its community, give it a positive profile and

create more opportunities for fund-raising, awareness-raising and broader income generation. 6.11 For example, the presence on site of those attending Day Support Activities and families and carers

will help to justify and pay for a proper catering facility. An on-site café for drop-ins, weekly luncheon

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clubs and coffee mornings, and the provision of food for people attending training sessions will help to cross-subsidise a kitchen at the Cottage Hospice.

The Residential Suites 6.12 The Cottage Hospice will provide an in-patient unit for between five and ten patients and their carers

and families at a time. 6.13 The Cottage Hospice is a new concept and one which is relatively untried: to date I have discovered

only two Hospices in England which have so far built family suites (at least for adult patients, as the arrangements in children’s hospices may be different). Because of this, it may seem more appropriate to proceed cautiously and build a five-bed facility in the first instance. However, although the build costs would be lower, it would be axiomatic that the running costs would be higher per bed because there would have to be minimum levels of staffing below which it was not safe to operate. There would be greater economies of scale in aiming for a ten-bed unit.

For example, based on provisional calculations at the beginning of January 2015 about the running costs of the entire Cottage Hospice (ie including the IPU, the day care service and the training facility plus the necessary service support functions), the budget for the first full year’s operation of the Cottage Hospice would be £766k for the ten-bed version and £554k for the five-bed version. Assuming that patients’ average stay is 14 days and that there is 90% occupancy of the residential unit during that year (both of which are admittedly aspirational targets), the cost per patient per day in the ten-bed Cottage Hospice would be £234 whereas in the five-bed Cottage Hospice it would be £337 per patient per day. (See section 9c on page 51.)

6.14 The central concept for the in-patient unit at the Cottage Hospice is that patients will occupy a

private suite or family room with their carer(s) who can remain with their loved ones on a 24/7 basis and provide as much care as they wish to offer, or are capable of providing, with the support of nursing staff.

6.15 The Cottage Hospice will be a nursing-facilitated service but staffing will be slimmed down on the

basis that families and carers will be actively involved in providing care for the patients and that the nursing staff would generally be supporting or supplementing this care.

6.16 It may be that some carers cannot provide much hands-on care either because they are aged or

infirm themselves, because they prove to be unable to provide the personal care involved, or because it transpires that they are incapable of doing so for emotional, practical or psychological reasons.

6.17 It will become clearer in practice how much care will be provided by family members and other

carers, and what kinds of care they are prepared to offer. It is possible that their efforts need to be supported to a greater, rather than a lesser extent by nursing staff, Volunteer Nursing Assistants and other volunteers and the budget will need to take account of this possibility. Because of this, the expenditure forecasts may have to include contingency sums for the recruitment of a larger staff complement for the residential unit.

6.18 However, the design of the Cottage Hospice will be such that family members and carers can spend

as much time with the patient as they wish.

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6.19 The residential areas of the Cottage Hospice will resemble a cross between the family room at

Pembury and a hotel suite. The space standard for each unit will be large enough to provide a spacious and well-appointed room for the patient with adjoining en-suite bathroom and walk-in wardrobe plus a contiguous bedroom for one or two carers consisting of one or two beds plus dressing table, chest of drawers and bedside cabinets so that carers can move in and stay, sleeping within sight and sound of the patient.

6.20 Although the rooms will be designed with medical and nursing needs in mind – fully adjustable

hospital beds with space on three sides for patients to be tended, hospital standard reclining day chairs, adjustable tray tables, a hoist which serves the bed and sitting areas as well as the ensuite bathroom, Electronic Assistive Technology, wide doors, hygienic floors with no changes in level, and a supplies storage area and drugs cabinet for use by nursing staff – the décor will mimic as far as possible that of a modern, mid-range hotel in order to minimise the hospital-feel of the facility and maximise the comfort and calm environment needed by the patient.

6.21 As a result, the colours and the soft furnishings will counteract the utilitarianism of the hospital

furniture, with blinds, curtains, pictures, cushions, controllable lighting including lamps and task lights and possibly plants and flowers.

6.22 Ideally the facility will have large picture windows or french windows to give the patient views onto

pleasant gardens and possibly outside access to a patio, veranda or balcony. 6.23 The design and décor will encourage the sense that this is a private, calm, quiet and peaceful place,

as has been highlighted by the Help the Hospices literature about the environment in which people aspire to pass their last days.

6.24 En-suite bathrooms will be designed with the care needs of the frail and the elderly in mind with

toilet, basin and wet-room style shower set out with a hoist track above in such a way that carers can easily assist from three sides of each unit with washing and toileting. Again the décor will play down the medical nature of the facility and play up the comfort, convenience and friendliness of the surroundings.

6.25 The patients’ suites will be arranged around a centrally-placed nurses’ station, perhaps along a wide

corridor, or in an H-formation, so that all of the rooms have easy and quick access to a source of help, and the nursing staff can oversee all the rooms at once. The in-patient area will be serviced by the facilities to which nurses would expect ready access – drugs room, sluice room, laundry and supplies cupboards, an office and records area, kitchenette, changing rooms and additional toilets and bathrooms.

6.26 It has been debated whether the lay-out of the first Cottage Hospice should be the model for any

subsequent Cottage Hospices set up by HitW so that staff who are being newly deployed always know where to locate the services. HitW’s ability to do this would depend on whether all the Cottage Hospices are new-build or whether some or all might be based in or grafted on to pre-existing buildings.

6.27 Also provided in or near the in-patient unit will be a few additional en-suite bedrooms for carers,

some additional bathrooms and toilets for the use of family and carers and a comfortable lounge when those who are caring need a break. Family members and carers who are spending large periods of time at the Cottage Hospice should not necessarily be expected to sleep close to their relative during the entire period of their stay: it may well be that they need a good night’s sleep while others take a turn in sitting by the bedside of the patient, and it is acknowledged that carers themselves

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need some respite during their vigils. There would also be one or more small meeting rooms that can be used for consultations, counselling or private retreat, prayer or reflection.

The Catering and Housekeeping Functions 6.28 It is my strong conviction that another vital feature of the Cottage Hospice will be the catering

department. 6.29 Although there has been some debate about whether the Cottage Hospice would provide only snacks

and cold food, potentially with a few limited facilities for families and carers to cater for themselves and the patient, the welfare of in-patients would seem to indicate that a more comprehensive catering facility involving the proper provision of hot food from a professional kitchen would be more appropriate.

6.30 Economics should not be the only factor which influences this choice. Although it may be cheaper to

provide only for sandwiches and microwave-able foodstuffs, if patients and their carers and families are to be resident for two to three weeks, healthy lifestyles and adequate sustenance cannot be maintained over any period of time without the provision of hot and nutritious food which is prepared on the premises. There is also a question of food safety and hygiene if families and carers are responsible for food preparation for patients.

6.31 It becomes more justifiable financially to have a fuller catering facility if day-care services are taken

into consideration. If the Cottage Hospice is to be bursting with activity during the day-time, then the catering provision becomes a revenue-generator rather than a net consumer of resources. In this scenario, the kitchens will provide lunches, snacks and breakfast / tea time foodstuffs for a wide range of day-time users, probably for a moderate cost and this will help to cross-subsidise the catering services provided for the in-patients and their carers and families.

6.32 This means that the Cottage Hospice will also need a relatively significant kitchen with the attendant

staff, alongside a housekeeping and cleaning function with their attendant staff. Laundry facilities could be provided on site or by contractors based off site, but the economics of this need further exploration. Maintenance and repairs could be overseen and handled from Pembury, along with IT and other management and administrative functions or there could be provision in the Cottage Hospice budget for a small complement of such support staff.

6.33 The budget attached has been prepared on the basis that there would be about a dozen people on

site providing maintenance, ICT, gardening and administrative functions, although some of these would be volunteers.

Day Support Activities 6.34 The Cottage Hospice is an opportunity for HitW to offer day care services in another geographical

catchment area to a new range of patients, and to offer support to patients, carers and families for whom Pembury would be too far to travel.

6.35 As with the hospice at Pembury, this has the advantage that the public face of the Cottage Hospice

will be one that is full of life, colour, activity, positivity, energy, and coming and going. 6.36 The objective of the Day Support Activities will be primarily to work with people in their last year or

life or from the time when they are told that their condition is terminal and that the only support (or the main type of support) available to them is palliative in nature.

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6.37 Day Support Activities would be the provider of help, services and therapy to anyone who has a life threatening illness who lives in the locality, and this could include people with cancer as well as people with other life-limiting disorders. The clients for this service would be both those who aspire to become Cottage Hospice in-patients as they approach their final days, and also those who are planning to die at home or in a care home or who envisage ending up in hospital. It would also provide support of various kinds (practical, emotional, psychological and therapeutic) to their family members and carers.

6.38 It is envisaged that the services provided in the initial years of the Cottage Hospice will primarily be

volunteer led and delivered. It would focus on intensely practical support but also spiritual and psychological support along with complementary therapies and “feel-good”, esteem-raising personal services. At first, the types of support provided would be:

Care Package Planning and Patient Advocacy

Welfare benefits and wills advice and specialist social workers

Counselling and therapy – for both patients and carers

Spiritual care

Bereavement support for survivors

Complementary therapies, such as massage, hypnotherapy, meditation and so on

Personal care and pampering, such as hairdressing, manicures, chiropody or make-up sessions

Arts and creative workshops

Luncheon clubs and mutual support coffee mornings or afternoon tea sessions 6.39 All of these activities would enable the Cottage Hospice to provide worthwhile services to the

community in another area and would offer additional opportunities to generate revenue and attract income from charitable and other sources. A café like the one at Pembury will also generate revenue from the sale of sandwiches, snacks and hot and cold drinks to both patients and their carers and visitors.

6.40 The volunteer complement for Day Support Activities has been reduced in the scenario in which there

are only five beds in the IPU on the basis that the demand for volunteers and Voluntary Nursing Assistants to spend part of their time with in-patients and their families would be proportionately lower. Over time, the staffing deployed to this unit could be increased as necessary, and could include paid professionally-qualified staff, if and when contracts are acquired to fund the provision of particular services in the area. These additional services could include:

Lymphoedema clinics and other nurse-provided minor medical procedures;

Physiotherapy and occupational therapy sessions 6.41 At this point, the budget may need to be increased to make provision also for:

Day Support Activities Nurse

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A Lymphoedema Specialist Nurse

A Physiotherapist and Occupational Therapist (on a part-time basis)

Paid counsellors

The “Learning to Care” Training Unit 6.42 The third key component of the Cottage Hospice is the training unit whose main aim is to work with

families and carers to prepare them in terms of their knowledge, skills, hands-on competences, confidence-levels and psychological and emotional preparedness to play an active role at the bedside of the patient, whether that patient is admitted to the IPU in the Cottage Hospice or who, through their own choice or not, eventually dies at home.

6.43 This plan suggests that the Cottage Hospice training facility would be staffed by we:train personnel

from Pembury and nurses, again based at Pembury, who have an interest and a vocation to extend their learning in palliative care to carers. They would be supervised by the Organisational Development Lead of HitW who would also be responsible during Year One for the preparation of training materials and their publication in various media, such as handbooks, CDs and on-line seminars.

6.44 The key client group would be family members and other carers and the types of workshop and

training sessions provided by the trainers would include:

Briefing sessions on what to expect and how to manage the personal challenges involved;

Patient symptom relief support, for example how to assist in phenomena such as managing pain, breathlessness, fatigue and so on;

Training in how to undertake various procedures, such as dealing with injections or syringe drivers, how to lift and move patients, how to wash patients and see to their oral hydration and so on;

Classes in how to care for people at the end of their lives, in terms of responding to the full range of their needs, including for emotional, psychological and spiritual support;

Workshops and discussions on how to handle participants’ own emotions, psychological needs, and personal self-care (in terms of eating, resting, sleeping, getting support and so on).

6.45 The budget provides for work to begin on these aspects of development up to a year before the

Cottage Hospice opens in order to ensure that training materials, manuals and teaching plans are in place on day one. Some provision for publication has been made in this in the budget, but none has been made for the engagement of external professional authors on the assumption that all the necessary materials can be prepared internally or separate bids made.

6.46 It is highly likely that such a training and skills development function would be able to branch out into

selling its training courses in palliative care to customer groups other than the families and carers of Cottage Hospice patients. Other customer groups could include fellow professionals in need of palliative care training, volunteers and care staff who work in hospitals, care homes or other hospices, people who work or volunteer in relevant charities and individuals from the local community who can envisage that they might take on a carer role in the short or medium term

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6.47 Again, these other potential clients give HitW the opportunity to attract fees as well as charitable donations, and the facility will help to raise the profile of the Cottage Hospice.

The Management of the Cottage Hospice 6.48 This plan is based on the assumption that management and administrative functions at the Cottage

Hospice itself are kept to the minimum and that the office-based staff at Pembury take on the bulk of the management and administrative duties for the Cottage Hospice. In this way, the provision of office accommodation at the Cottage Hospice is kept to the minimum and the overhead costs are kept as low as possible. However, there will be the need for some support services to be based on site.

6.49 As it is envisaged that the Cottage Hospice will be a nursing-facilitated establishment, the plan

assumes that the most senior officer on site will be a Matron and his/her second-in-command will be a Support Services Manager. These two individuals would report in to the relevant Director at HitW.

6.50 The Matron would take responsibility for leading all the nursing, care and welfare activities on site,

with the Support Services Manager responsible for ensuring the catering, housekeeping, IT, communications, reception service , gardening, maintenance and building control operations function properly. The budget has allowed for some support service personnel to be on site to supply these functions, but responsibilities for personnel, training, finance, ICT, fundraising, administration and other central functions are assumed to remain at Pembury. It is for HITW to decide what the Cottage Hospice should contribute to the core to cover its share of these services as well as the costs of recruitment, supervision, CPD and other management functions.

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Section Seven: The design of the Cottage Hospice General Overview 7.1 It has not yet been decided whether this should be a wholly new-build, or a conversion or a

combination of the two. There are pros and cons but ultimately the chosen site will probably be the biggest determinant of this.

7.2 Agents are currently putting forward potential sites in Crowborough or around Heathfield or

Uckfield and the roads which join them. Because of planning considerations, access requirements and potential restrictions on space and parking, it would make sense to have a site within a settlement or on the fringes of a settlement, served by public transport. HitW staff also thought it should have ready access to local shops and facilities.

7.3 Potential sites include plots of land with large detached houses on them, disused office

buildings, disused commercial premises of various kinds, redundant public buildings, and old pubs and hotels. Sites are very unlikely to be greenfield sites currently in agricultural use. However, they should have the potential to provide a quiet, calm, green location for the in-patients.

7.4 If the chosen plot consists of a large existing building with surrounding land, it is possible to

envisage a conversion of the existing building to provide shared public areas and most shared support services with perhaps the in-patient unit in new purpose-built blocks surrounding it.

7.5 The strong consensus seems to be that in-patient services are all at ground floor level to

avoid having to put in a lift. 7.6 It is important that the Cottage Hospice should not feel at all like a hospital. It should be a

cross between being homely (like a patient’s own home) and a nice hotel. The façade it offers on first view to visitors should be welcoming and inviting.

7.7 Where it is sensible, affordable and easy to incorporate, the Cottage Hospice should be

designed according to green and sustainable technologies. However, this should be at a “good citizen” level, rather than a “deep green” level that incorporates expensive, unproven and untested technologies.

7.8 However, it should be fitted out with the latest technologies: rooms should have Electronic

Assistive Technology, nurses should be able to use smart phones in their work with wi-fi links back to shared records at Pembury, there should be access to shared systems and records across the sites, wi-fi for patients and visitors, phones in every suite, TV services and so on.

External Areas 7.9 It has been estimated that the site needs to be about 1 acre to 1.5 acres in size. The building

or buildings should be surrounded by gardens and flower beds and borders with attractive planting and shrubs and trees.

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7.10 There should be a private paved courtyard, or section of garden, serving the in-patient space which is not overlooked by other users.

7.11 There should be car parking for up to 30 cars or whatever planner will allow. The Public Areas 7.12 The public area should be welcoming and warm. It can be busy and full of life and colour,

and easily accessible. It should be a large communal areas with some private rooms for treatments and / or counselling. It is important for the community to feel that they can readily come in and use the services, rather than that this is a private, secretive place.

7.13 The front doors flanked by plants and welcoming signage should give on to a pleasant and

light reception area. 7.14 A front reception area with reception desk of c 7.5m x 7.5m leading into open reception hall

of c 10m x 10m which includes coffee bar area of c 3m x 3m with café tables adjoining for the use of day visitors who are attending on a drop-in basis or for appointments for treatment or counselling.

7.15 The space can be used flexibly for classes (caring for your loved ones etc), treatments

(massage, physiotherapy, lymphoedema treatment), day centre services (art classes, coffee mornings, drop-in services etc), volunteer activities as well as lunches and snacks available from the café.

7.16 Up to three large classroom / meeting room areas of c 8m x 5.5m – one doubling up for

Hospice Day Care services in due course, possibly 12m x 6m 7.17 There should also be three or four treatment / counselling rooms of c 3.2m x 3.2m 7.18 There should be potential in the future to have clinical treatment rooms (for the use of

Nurses, Lymphoedema Specialists and so on): one or two c 4.5m x 4.5m with 2 or 3 treatment chairs

7.19 There should be toilets for use of public and staff, including a large disabled washroom 7.20 Also included should be a small staff / records office c 2.5m x 3m and a furniture store Residential Suites 7.21 It is important for the residential suites to be secluded from what might be a busy and

bustling public area at the front of the building, possibly with a separate entrance. 7.22 It is also important that the quality of life in the residential suites is high with good space

standards, hotel-quality décor and fixtures and fittings, lots of light and an airy feel, a quiet environment without street noise or external disturbance, a sense of retreat and calm, and a feeling of being close to nature.

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7.23 There are probably between 5 and 10 rooms or suites of rooms, dependent on the economics. Rooms are shared by patients and their carers and families, but are not two –patient rooms or wards.

7.24 These rooms need to be suites, rather than single rooms 7.25 Perhaps one suite should be set up for patients with neurological disabilities 7.26 Each suite is about 9m x 4.4m plus an en-suite bathroom of at least 2.4m x 1.8m and a walk-

in cupboard / ample storage area 7.27 Within the suite is bedroom area for visitors with twin beds or a double bed, plus larger area

for patient 7.28 The visitor bedroom could be an alcove off main room or could ideally be a small room with

door 7.29 The patient area has fully-adjustable hospital bed with space all round it 7.30 Patient area also contains one or two reclining chairs, bedside table, dressing table, soft

seating area, TV 7.31 Hoist (Yorkshire Care) runs around bed, around seating area and into bathroom and the

patient has access to Electronic Assistive Technology. There is an argument for having a mobile hoist instead of a fixed-track hoist, which needs further exploration

7.32 The bathroom has space all round toilet, basin and wet room style shower, with the hoist

serving all areas so all functions can be assisted by nurses/helpers. There will be non-slip flooring which will all be on one level

7.33 The walk-in cupboard has hanging space, shelving space, room to put wheelchair and

personal care supplies, luggage etc 7.34 There should be a small drugs cupboard – large enough and with flap for nurse to dispense

from 7.35 The décor is more like a hotel than a hospital including chairs, curtains, blinds, colours 7.36 There are wide doorways for wheelchair access with viewing panels which can be shaded 7.37 There are large windows with nice views, or ideally french door access to a veranda or

courtyard garden which is for the exclusive private use of in patients. Services supporting the residential suites 7.38 The residential rooms are arranged round a large central nurses station which is within easy

reach and sight of all. The rooms could be arranged along a double-corridor, or in an H-shape or a C-shape or around a central hub

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7.39 In addition, there should be one or two stand-alone guest bedrooms c 4m x 4.8m with twin beds, bedside tables, desk, desk chair, TV, chest of drawers and ensuite bathroom c 1.8m x 2.44m so some carers or family members can gain some respite from caring activities through – where possible – an undisturbed night’s sleep

7.40 There should be a sitting and eating area for visitors with couches and tables and chairs etc

of say c 5m x 5m 7.41 In addition, say two toilets with wash basins, perhaps a stand-alone shower / bathroom

room for visitors’ use without disturbing the patient in his / her suite. 7.42 The facility also requires a sluice room c 3.7m x 3.1m, a drugs room c2.9m x 3m, a clinical

room of c 2.9 x 3m, a kitchenette c 4.7m x 4.2 m, 2 or 3 x storage areas for bedding, dressings, oxygen, medical supplies etc (c 2m x 3m per storage area)

7.43 There should be a nurses’ office plus nurses’ rest room (c 4m x 4m plus 3m x 3m). There

might be provision for a staff member to be able to sleep on site whilst on stand-by. 7.44 There should be a small meeting room (for confidential consultations) c 3m x 3m with soft

seating and a coffee table 7.45 There needs to be a holding room for deceased patients ( c 3.9m x 5m) with its own external

entrance / exit to discreet parking bay for hearses Support services 7.46 The facility should be served by a kitchen of c 8m x 5.3m containing 1 x steam oven, 1 x

range with 5 or 6 burners and double oven beneath, grill unit, microwave, plus industrial dishwasher, 4 fridges, 1 or 2 freezers, blast chiller, 2 sinks, 2 handwash basins, preparation areas.

7.47 There should be two food storage cupboards each c 1m x 2.6 m, plus office for catering staff 7.48 Laundry room should be provided of c 6.5m x 6.5m containing 2 washing machines, 1 x

tumble dryer and 1 x ironing machine plus all kit required to supply power etc, along with laundry cupboard c 3m x 3m

7.49 Also serving the Cottage Hospice would be a boiler room, electric supply cupboard, phone

and IT services room, tools and equipment office for maintenance purposes 7.50 There should be a male and female staff cloakroom, changing room, shower, lockers and

clothes and bags hanging areas (for up to 25 staff/vols).

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Section Eight: Risk and Contingency

The Cottage Hospice is innovative and as such inevitably carries risks: certainty comes only with projects that have often been run before and that offer a great degree of predictability. However, this does not mean the Cottage Hospice is too risky for HitW to undertake: there may be other less ground-breaking ideas into which HitW could invest its money, should this be a preferred route, but HitW can also protect itself by identifying, assessing and taking steps to mitigate the likely risks before the start of the project. Operational risks should be identified and tackled separately. Nature of Potential Risk Possible Mitigations of That Risk

1. The concept is flawed Build the facility so it could be adapted to provide for the delivery of different (hospice related) services with minimum further investment should this be necessary

2. The location is unsuitable Set clear criteria for choice of site and abide by them Ensure any compromises on site do not undermine key attributes Take appropriate professional advice

3. The design is unsuitable Look at examples from elsewhere and understand their learning points Test drive plans with relevant staff and experts Select experienced professionals with appropriate portfolios Design in flexibility for the future

4. Lack of support from stakeholders

Decide which are the must-have stakeholders and work with them Work out stumbling blocks and if / how they can be addressed “Sell” the concept to them but also work out what would make it work for them and if their aspirations can be met Decide where HitW’s line in the sand is

5. Timetable for construction not met

Not so crucial as this can be as no public finances are involved in the construction process and therefore no external funders to answer to Agree timetable with professionals and contractors with key dates and penalty clauses, as necessary

6. Inadequate project management

Set up small steering group to supervise project implementation and management Appoint trusted architect as project manager, working on pre-agreed and realistic schedules, timetables and budgets Invest sufficient resources in appropriate levels of project management

7. Service is more costly to run than is anticipated

Accept that maximum efficiency may not be achieved until project is fully underway Investigate root causes of unanticipated costs and address these Use skills already within HitW to explore alternative and more effective ways to raise the resources necessary to cover costs Learn lessons before embarking on Cottage Hospice Mark II or III

8. Patient demand is not as great as previously thought

If patient demand for residential places is less than envisaged, then the fall-back position is to bring unused Cottage Hospice beds into circulation for low dependency respite care and earn income from that source Day Support Activities can be supplemented or altered in scope easily “Learn to Care” capacity building and skills development courses could be supplemented with training courses in palliative care for professional audiences at bigger surpluses Learn lessons before embarking on Cottage Hospice Mark II or III

9. Lack of enthusiasm from staff and volunteers

Build on the motivational factors uncovered during initial planning meetings Ensure existing staff and volunteers benefit from training opportunities particularly cutting edge roles and developments

10. Lacklustre support from funders Look for funders who seek out innovation and experimental initiatives Maintain high profiles in journals and media for developmental aspects Evaluate project and promote positive learning points

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Section 9A: Budget Assumptions for the HitW Cottage Hospice Underlying Assumptions

The budget forecasts for the Cottage Hospice are based on a number of assumptions: Overall Costings 9.1 Costings have been based on both HitW’s likely out-turns for the year ending 31st March

2015 and the forecasts for the year beginning 1st April 2015. Running costs are based on totals gleaned from January 2015’s management accounts. Salaries are based on the Establishment Budget for Pembury from April 2015.

9.2 Costings for the Cottage Hospice are based on there being either ten IPU beds or five IPU

beds. This approach has been adopted on the basis that there will be different economies of scale depending on the size of the facility and whilst a five-bed unit will be more affordable in terms of its overall costs, the expenditure per patient in terms of both nursing and ancillary services drops significantly with double the number of IPU beds.

9.3 The budget is based on ten and five bed models because that makes comparisons with the

15 beds in the IPU at Pembury easier to compute. Premises 9.4 With regards to premises related costs, it has been assumed that a ten-bed unit will have

approximately one third of the floorspace of Pembury, and a five-bed unit would be about one quarter of the size of Pembury. The Cottage Hospice will not need a great deal of office accommodation, which immediately reduces the floorspace required by 50% or more. It has been assumed that if it has ten beds, the Cottage Hospice IPU would be much the same physical size as the one at Pembury, with a five bed unit being about half the size of the Pembury IPU. There would also be a Day Service area and a training area, both of which would be about the same size as those at Pembury, plus space for support functions, such as catering and housekeeping, which would be more modest in scale.

9.5 On these general assumptions, the forecasts for the costs of such items as the rates,

insurance, gas, electricity, waste disposal and other running costs are based on the relevant percentages (0.33% and 0.5%) of the annual running costs for Pembury.

In-Patient Nursing 9.6 The staffing levels for the IPU at Pembury suggest that there are three eight-hour shifts of

nursing staff per day, two of which are based on day-time staffing levels and one of which is based on reduced night-time levels. In general, it seems that 17 members of nursing staff are needed to cover a complete 24-hour period. The total staff complement for the IPU also suggests that HITW needs two “sets” of 17 nurses to operate.

9.7 The basic premises of the Cottage Hospice are that families and friends will play an active

role in the care of the patient and that the conditions suffered by the patients are such that

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they do not need intensive support from doctors and complicated drugs regimes. It is on this basis that it has been decided that nursing levels in the Cottage Hospice IPU will be based on the night-time staffing patterns for the IPU at Pembury.

9.8 The nursing staff complement for the Cottage Hospice has therefore been worked out

according to these patterns. For ten IPU beds, the daily rota of nursing staff is ten, with two complete “sets” of staff. For five IPU beds, it has been assumed that fewer nursing staff would be required, but that for patient safety reasons, it could not go as low as five staff per day. The daily nursing staff levels have therefore been given as seven, with a total complement of 15.

9.9 Workshops with HitW staff have thrown up the concern that families and friends do not and

will not be willing or capable of playing an active role in the care of their loved ones; that when faced with the reality of giving bed-baths or dealing with bed-pans and vomit-bowls, they opt out again, leaving these types of tasks to nurses. In addition to this, their other commitments (to children, jobs and other dependants) would prevent families and friends from being in attendance on a 24-hour per day, seven-day per week basis. This was so strong a message that it has been taken into account.

9.10 With this in mind, the projected expenditure on staffing for the Cottage Hospice should

include a contingency for nursing staff. For a ten-bed IPU, a contingency of eight additional staff, and for a five-bed IPU, a contingency of three additional nursing staff could be envisaged.

“Year One” 9.11 Figures for “Year One” have been included in the expenditure forecasts on the basis that the

first six months of Year One of the Cottage Hospice consist of the construction project and the second six months see the Cottage Hospice in operation, albeit at less than 100% capacity. The majority of costs under the “Year One” column assume that expenditure on running costs and staff commence at the half-year point. However, some expenditure items have been calculated on the basis that certain people or activities begin a few months before opening (for example, the Head of the Cottage Hospice, a Co-ordinator of In Patients and users of Day Support Activities and the work on the materials for Carer Workshops) and that certain contracts and fitting out projects have to commence before the opening date. The formulae in the spreadsheet and the totals shown indicate where particular costs begin to be incurred before opening day.

Notes on Expenditure Residential Unit Nursing Budget Head 9.12 The budget makes provision for a Matron or Senior Sister at the Cottage Hospice. The

Cottage Hospice will need a Head of Department, and I have assumed that this person will be a nurse, given that the intention is that the Cottage Hospice will be a nursing-facilitated unit. The budget also assumes that the Matron starts work at the beginning of the build so that s/he has ownership of the project from the start.

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9.13 The ratios of nursing staff at each level are based on those at Pembury, but I have assumed there will be a role for Volunteer Nursing Assistants on the IPU nursing team.

9.14 Under this heading, as under all staffing headings, I have assumed that all personnel are

recruited at the top of their salary band. This means that the overall staffing budget will be over-stated, but as an assumption had to be made about the salaries on which people will be recruited, it seemed simpler and no less arbitrary to assume everyone would be on the maximum than their being on the minimum or dotted about somewhere mid-scale.

9.15 As stated in point 3 above, the concerns of HitW staff that families and friends will not take

an active role in patient care have been accommodated by an extra provision for staffing, with up to an additional nine nursing staff for the ten-bed unit and an additional four for the five-bed unit. The figure for contingency included under the IPU nursing budget head caters for these extra staff should it transpire that they are needed.

9.16 The expenditure spreadsheet has two columns. The figures and totals in the left hand

column give the forecasts for the costs of a Cottage Hospice with ten IPU beds and those in the right hand column provide the forecasts for a Cottage Hospice with five IPU beds.

9.17 This split carries on through the whole spreadsheet with the column on the right showing

costs based on a five bed Cottage Hospice carried through the forecasts for the overall size of the building, the amount of support services required, the overall running costs of the facility and to a certain extent, the amount of day-time activity organised on site.

Day Support Activities at the Cottage Hospice 9.18 The budget for the Cottage Hospice is predicated on there being a plethora of day-time

activities on site, which include the classes and workshops for families and other carers which were always envisaged as a complement to and feeder for the In Patient Unit but will also include other services which would bring a wider range of users to experience and benefit from the Cottage Hospice. In the early years, it is envisaged that these services will be provided primarily by volunteers and by staff from Pembury running periodic clinics and sessions.

9.19 The sessions provided at the Cottage Hospice Day Service could include advice and

counselling on subjects such as devising a comprehensive care packages, welfare benefits and wills; complementary therapies; and social and mutual support sessions for both patients and their families. Bereavement support, counselling, spiritual support and other social activities could also bring life and activity to the Cottage Hospice.

9.20 The provision of these services leads to a requirement for between 15 and 21 volunteers,

depending on the size of the facility. An assumption has been built in that the cost of a volunteer or a VNA works out very low for travel and expenses. This may need to be altered in the light of historical information from Pembury about what volunteers there tend to ask for in terms of subsistence. It is not known whether the plan to create a larger force of Volunteer Nursing Assistants entails paying them the kind of day-rate which is often payable to skilled volunteers: no provision for this has been made.

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9.21 Again here it has been assumed that a Co-ordinator (shared with the In Patient Unit) would need to be working on the development of services for three months before the Cottage Hospice opened.

9.22 As the Cottage Hospice becomes better established and its funding becomes steadier and

more consistent, a broader range of nurse-facilitated services could be provided as part of the Day Service. For example, the HitW Lymphoedema service could have an out-post at the Cottage Hospice. Day care could be provided for cancer patients as well as others who have been assessed as terminally ill. Physiotherapy and occupational therapy could be provided at a few sessions per week by full or part-time therapists.

Support Staffing Costs 9.23 The budget assumes that a Support Services Manager is recruited for the Cottage Hospice,

that this person is the second-in-command on site (reporting to the Matron) and that the incumbent needs to be in post six months before the Cottage Hospice opens in order to set up and organise the catering and housekeeping services.

9.24 The costs of providing catering and housekeeping have been calculated as a proportion of

the costs at Pembury and the necessary staffing levels have been estimated on the basis of the number of people it takes to deliver support services at Pembury.

9.25 In the model which includes five In Patient beds, a smaller staff complement is required, but

the savings are not proportionate because it would be difficult to imagine how the facility could be safely and effectively run with only skeletal levels of support staff.

9.26 Costs at the Cottage Hospice are being kept low by not providing administrative and other

support roles on site(for example a services administrator and a co-ordinator of payroll, timesheets and finances) and replacing them with additional capacity at Pembury.

9.27 The model assumes that as at Pembury, reception duties are covered by a rota of volunteers

who claim a nominal amount of subsistence. Contracts 9.28 The costs in this section have again been calculated on the basis that they area proportion of

what is spent at Pembury. 9.29 The cost of the drugs budget has an element of guesswork in it, although the underlying

assumption is that patients at the Cottage Hospice do not need as many drugs or drugs that are as expensive as those used in the Pembury IPU, and that spending is 100% covered by the CCG.

General Expenditure 9.30 Again, the majority of costs provided have been derived from an analysis of the spending at

Pembury in the year to 31st March 2014. Utilities and other on-costs are based on the assumption – as outlined above – that the facility is either one third or one half of the size of the facility at Pembury, depending on the number of In Patient beds.

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9.32 Assumptions on the costs of food and café supplies are based on an analysis of how many

consumers are on site at Pembury per day and how many consumers are likely to be on site at the Cottage Hospice each day, including in-patients, relatives, day visitors and course attenders. A line is included on the assumption that HitW would expect the Cottage Hospice to contribute towards the costs of central Pembury-based personnel, finance, fundraising and ICT services. There are (currently) gaps in the budget which will be filled by later entries for items such as depreciation and any assumptions generally made about the sums HitW usually adds for contingencies.

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Section 9B: The income generation opportunities for the Cottage Hospice The Capital Programme 9.33 The development of the new Cottage Hospice will provide exciting additional fundraising

opportunities for Hospice in the Weald, though in the short term it is unlikely to drastically affect the majority of our fundraising income streams.

9.34 As the Board of Trustees have designated up to £5 million of Hospice reserves to the

development of the pilot ‘Cottage Hospice’ and it is anticipated at the moment that the majority of the land and building costs to first fix will be covered by these designated funds, there is no need for a capital appeal in order to continue the project.

9.35 The other three initial key areas for funding will be:

1. the fitting (second fix) and kitting out of the Cottage Hospice 2. the “Learning to Care” training & development materials for families, carers &

volunteers on various aspects of caring for the dying 3. the ongoing running costs (staff, drug supply, utilities etc)

9.36 The fitting and kitting out of the Cottage Hospice provide the Fundraising Department with

the opportunity to go to existing and potential Major Investors with bespoke proposals and cases for support to fund part or all of these additional one-off costs.

9.37 The Fundraising Department have anticipated a great deal of interest in this and have

budgeted for an additional £100,000 to come from Major Investors for this purpose. This may come from a single major investor or may be a combination of smaller gifts from multiple major investors.

9.38 The Fundraising Department will continue to use its relationship fundraising model to best

match supporters and their interests and priorities with funding opportunities. Once further detail is confirmed about the first Cottage Hospice, they will begin to pull together cases of support for this purpose. Part of that process may include naming opportunities, visual recognition for substantial gifts and PR opportunities.

9.39 The fitting and kitting out of the Cottage Hospice also lends itself well to putting in bids to

Trusts and Foundations for one off gifts. We have historically had success with capital bids to fund equipment (rising recliners, ensuite bathrooms, hoists etc) and predict these funding opportunities will extend to the Cottage Hospice as well. Again, once further detail is confirmed for the scope of the Cottage Hospice, it may be that a significant gift may be possible from a Trust or Foundation that supports capital projects in a more substantial way.

9.40 The creation of innovative training & development materials (“Learning to Care”) for

families, carers & volunteers also lends itself to putting in bids to Trusts and Foundations for one off gifts, particularly to those that specialise in education, training & development.

9.41 HitW will not proactively approach companies, businesses or individuals for gifts in kind as

our preference will always be for donations (particularly from private individuals who have

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capacity to Gift Aid donations) so any furniture or equipment has been purchased to spec and is fit for purpose.

9.42 Items for which fundraising could be realistic Establishment costs

Beds hospital beds x 10 plus visitor beds x 25

Furniture reclining chair x 30, bedside over-bed tables x 10, armchairs and coffee tables (20 sets), sofas (15), café tables and chairs (6 tables and 24 chairs), meeting and seminar room furniture (large tables and matching chairs), chests of drawers (24), bookcases (numerous), bedside tables (50) , lockers (20), desks and office chairs (10 maximum), cabinets for office use, side tables,

Bedding and linen sheets and pillow cases, undersheets, mattress and pillow covers, waterproof mattress covers and protectors, coverlets, blankets, pillows, bolsters, towels, uniforms, overalls and protective clothing,

Bathrooms toilets, basins, showers, baths

Medical equipment hoists, wheelchairs, drip stands, bedside equipment

Kitchen set-up steam oven, conventional oven, hob, heated cabinets and trolleys, microwave, fridges, freezers, quick-chilling unit, cupboards, storage units, preparation counters, sinks and handwash basins, professional dishwasher,

Kitchen equipment pots and pans, cooking vessels, serving vessels, knives, boards, preparation equipment, containers, utensils

Catering equipment plates and bowls, cups and saucers, glasses, cutlery, trays

Kitchenette and café kit

microwaves, beverage machines, chilled display units, drinks machines, kettles, mini-fridges

Laundry room set up washing machines, drying machines, ironing machines, specialist plumbing, boiler/water heater, soap dispenser, racking system, airing cupboard, soiled laundry bins and sacks,

Electronics 4G phones, mobiles, televisions, CCTV, security and entryphone systems, fire alarm system, computers and IT, training room kit, links to Pembury

Counselling and therapy kit

therapy beds, chairs for lymphoedema clinic, equipment for complementary therapy sessions, materials and equipment for training sessions, stationery

Revenue Generation

9.43 The ongoing running costs of the Cottage Hospice are only now being determined. 9.44 It is envisaged that a sizeable chunk of the running costs can be recouped by applying for the

Continuing Care Allowance to which patients will be entitled. This will amount to £107 per day or £749 per week.

9.45 It would not be realistic to assume that the volume of bookings for the residential suites

would be such that they were occupied for 365 days per annum, or to bank on patients rotating seamlessly every 14 days.

9.46 However, assuming that if the Cottage Hospice has ten residential units, 20 out of 26 weeks

will be occupied in an average year, and if it has five residential units occupied for 10 out of 13 weeks, then the income from Continuing Care Allowance would be £299,600 pa in the first instance, and £149,800 in the second.

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9.47 In anticipation of overall increased costs (as the running costs of the Cottage Hospice will be funded by general funds like all other Hospice Services), the relaunch of the Hospice Lottery as a £2/line product has been aligned to this expansion of existing services.

9.48 The change to Hospice Lottery has been budgeted to bring in an additional £400,000 in

2015-16 compared to 2014-15, and will continue to grow as the Lottery acquires new members over the next 3-5 years.

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HOSPICE IN THE WEALD COTTAGE HOSPICE (based on January 2015 figures)

Year One

Year One

6 months

12 months

Per month

6 months

12 months

Per month

EXPENDITURE HEADINGS Staffing Costs (Gross)

Staffing Costs (gross) NURSING FOR TEN IN-PATIENTS

FOR 5 IN-PATIENTS

Assumes 3 shifts per 24 hrs

WTE's

Assumes 3 shifts per 24 hrs WTE's

Matron/ Senior Sister 1 24127 48253 4021 Matron/ Senior Sister 0.5 12063 24127 2011

Staff Nurse 2.24 33430 66860 5572 Staff Nurse 1 14924 29848 2487

Nursing Assistants 4.5 50540 101079 8423 Nursing Assistants 4.5 50540 101079 8423

Extended Role Volunteers 2 1100 2200 183 Extended Role Volunteers 2 1100 2200 183

Co-ordinator: Day and In Patients 1 12347 24694 2058 Co-ordinator: Day and In Patients 0.75 9260 18521 1543

Nursing staff sub-total 10.7 121543 243086 20257 Nursing staff sub-total 8.75 87887 175774 14648

Therapeutic Day Care Activities

Therapeutic Day Care Activities Volunteer Complementary Therapy 12 3750 15000 1250 Volunteer Complementary Therapy 6 3125 7500 625

Extended Role Volunteers 3 825 3300 275 Extended Role Volunteers 3 825 3300 275

Volunteers 6 600 1200 100 Volunteers 3 300 600 50

Sub-total: Therapeutic Daytime Activities 21 139065 287280 23940

Sub-total: Therapeutic Daytime Activities 12 101397 205695 17141

Support Services

Support Services Catering Assistant 3 25820 51639 4303 Catering Assistant 3 25820 51639 4303

Housekeepers 0.75 6659 13318 1110 Housekeepers 0.75 6659 13318 1110

Gardening (volunteers) 4 400 800 67 Gardening (volunteers) 4 400 800 67

Receptionists (volunteers) 12 1200 2400 200 Receptionists (volunteers) 12 1200 2400 200

Sub-total support services 19.8 34078 68157 5680 Sub-total support services 19.8 34078 68157 5680

Total Staffing Costs 51.5 294686 598522 49877 Total Staffing Costs 40.5 223363 449625 37469

Section 9c: Budget

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Contracts and General Expenditure

Contracts & Gen Exp Maintenance and handymen etc

3000 6000 500 Maintenance etc

1980 3960 330

IT Support and consultancy

5000 2046 171 IT Support

4000 1550 129

Oxygen supplies

1200 2400 200 Oxygen

600 1200 100

Clinical waste disposal

2500 5000 417 Clinical waste disposal

1250 2500 208

Waste disposal + water

4731 9462 788 Waste + water

3122 6245 520

Rates

5625 11250 938 Rates

3750 7500 625

Gas

4136 8271 689 Gas

2576 5151 429

Electricity

8595 11461 955 Electricity

6512 8682 724

Phones and comms

1060 1816 151 Post and comms

803 1376 115

Printing, post and stationery

1897 2529 211 Printing, post, stat'ry

1437 1916 160

Building and contents insurance

1367 2733 228 Buildings and contents

1035 2071 173

Medical equipment & supplies

11250 22500 1875 Med equip & supplies

4950 9900 825

Medical consumables

11250 22500 1875 Med consumables

4950 9900 825

General housekeeping supplies

2177 4354 363 Gen hsekeeping

1649 3299 275

Cleaning products and materials

1737 3475 290 Cleaning products

1316 2632 219

Food

13260 26520 2210 Food

8710 17420 1452

Café and snack purchases

2923 5845 487 Café and snacks

2214 4428 369

Kitchen disposables

905 1811 151 Kitchen disposables

905 1811 151

Laundry and uniform costs

2813 5625 469 Laundry & uniform

1875 3750 313

Therapy equipment/consumables

2640 5280 440 Therapy equip/cons

2000 4000 333

Kitchen maintenance

900 1800 150 Kitchen maintenance

900 1800 150

Sundries

2500 5000 417 Sundries

1750 3500 292

Total Contracts and General Expenditure 91465 167678 13973 Total Contracts and General Expenditure 58285 104591 8716

Total expenditure

386151 766200 63850 Total expenditure

281647 554216 46185

Cost per bed per day 90% occupancy

233

Cost per bed per day 90% occupancy

337

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Sources of Income (for 10 bed IPU)

Income (5 bed IPU) NHS Continuing Care Allowance

299600 24967 NHS Cont Care All'ce

149800 14980

Catering

9996 833 Catering

4398 367

Café and sandwich income

29664 2472 Café and sandwich income

14832 1236

Total Income

339260 28272 Total Income

169030 16583

Income to be fundraised

-426940 -35578 Income to be fundraised

-385186 -29602

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Section Ten: Timetable 10.1 The proposed timetable for the next phase of development of the Cottage Hospice is as

follows unless the Board want to suggest alterations and assuming the business case, as developed to date, is accepted at the Board Meeting on 21st April 2015.

10.2 The timetable shown below demonstrates the necessary pace and the timing for the next

phases of development if work is to begin on site in very early 2016 and the new facility is to open by 1st June 2016

Date Task

21st April 2015 Board approve Cottage Hospice Business Case and set any further objectives

21st April 2015 Board appoints small sub-group to work on further development of plans

1st May 2015 M E Cassam report with initial drawings and plans for Cottage Hospice

13th May 2015 Meeting with all relevant professional advisers: ME Cassam, architectural consultants; KLW, planning consultants; Oldfield Smith, estate agents, to review potential sites and their implications and set clear parameters for site choice

30th June 2015 Review of potential sites and opportunities

14th July 2015 Board receives update on progress including indicative capital outlay

31st July 2015 HitW appoint academic researchers as formal evaluation partners

3rd August 2015 Decision on site and negotiations / legals for purchase begin

30th September 2015 Detailed drawings, plans and costings are completed

14th October 2015 Board approves capital outlays involved and resolves to proceed

20th November 2015 Tender process for selection of building contractor is completed

30th November 2015 Formal contract with selected building contractor is signed

5th January 2016 Work begins on site

1st July 2016 Ribbon is cut on first Cottage Hospice

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Section 11: Evaluation 11.1 As the Cottage Hospice is an innovative project which sets out to meet needs identified in

Help the Hospices reports and issues highlighted in other research from specialist institutes working on developments in palliative care, it will be very worthwhile in a number of different respects if HitW ensures that it is evaluated properly so that its impact can be measured and its lessons for the future can be drawn out and used to design any further developments, such as a potential second Cottage Hospice.

11.2 It would be useful if the evaluation were done by recognised academics in the field so that

HitW can benefit from the likely profile when the potential of its ground-breaking Cottage Hospice initiative is identified. The Cottage Hospice concept is built on the findings of a raft of research about the needs of patients and their families which has been done for Help the Hospices, Marie Curie Cancer Care, the Government and other funders over the last five to seven years, and as it does set out to meet those needs in a different way, it should aspire to become a recognised case study within the existing body of research. HitW will receive positive feedback for the exploratory nature of the project – even if the model is not yet quite right – because of current concerns about present and future provision of palliative care (for example for the bulge of baby boomers who will soon start to put demands on the service) and the contribution it could potentially make to answering those concerns.

11.3 Closer to home, HitW may be in a position to build a second or even a third Cottage Hospice

if the model is a workable and feasible one. It is therefore very worthwhile on this basis to evaluate the shape and scope of the initial Cottage Hospice with the aim of drawing out the success factors for the benefit of any younger siblings it may have. In any case, more generally, hospices aim for Gold Standards in their work, and it is good practice to assess and evaluate or re-evaluate how one does things in order to make sure they are being done as well as possible.

11.4 The evaluation needs to be adequately funded and to begin probably before the initiative

has gone much further so that the detailed objectives and opening theses can be explored and agreed with the researchers and the data collection methods can be put in place in advance. HitW should probably start devising new learning materials during the second half of 2015 so it is suggested that suitably qualified research teams should be approached now so that they can be appointed before the summer break in 2015.

11.5 Suitable candidates for inclusion could be the Cicely Saunders Institute at King’s College,

London; Marie Curie Palliative Care Institute in Liverpool; the International Observatory on End of Life Care at Lancaster University; and the University of the Third Age, which have offered to do the research on a pro bono basis.

The Business Case · 2017. 8. 31. · 14. KLW opportunities and constraints – To be commissioned...

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