Review of Palliative Care Inpatient Services in Cowal Final Report from External Assessor to Cowal Palliative Care Implementation Group 25th September 2011

Key Points  Four palliative care inpatient beds are required for patients with cancer related and non- cancer related palliative care needs in Cowal.  The four palliative care inpatient beds must be configured in a way that ensures a quiet, peaceful environment, ensures person-centred compassionate care and maintains the privacy and dignity of patients and families.  These four beds should not be provided in isolation as that is not an efficient use of the nursing resource and is therefore not cost effective and not sustainable.  The 19 beds determined by the bed modelling group should be provided in no more than two clinical areas.  The four palliative care inpatient beds could be provided in a six bedded facility with the other two beds being used by patients with high nursing needs but not acutely ill or likely to disrupt the quiet environment.  If possible these beds should be located in ward 1 which is currently being upgraded but may require adjustment to provide a less clinical environment.  The remaining 13 beds may be delivered in ward 2. This would offer a significant degree of flexibility and a minimum of six rooms that could be used for single occupancy within the hospital.  If possible the original hospice building should be used to provide a family support centre within the hospital and to develop day palliative care services (see below). This would allow some benefit to be gained from the community money spent on refurbishing that facility prior to its closure  The refurbishment/amendment of these facilities may incur capital costs – it is hoped that the CHP and the community of Cowal will support this as appropriate.  In order to ensure continuity of care designated staff should be deployed/recruited to work in the 6 bedded unit where possible based on personal interest.  A palliative care education and training plan should be developed and delivered as soon as possible to support all staff involved in palliative care provision.  Consideration should be given as to how the Hospice Trust could be supported to develop its fundraising and communication profile.  The volunteers who drive patients to hospitals should be commended - their contribution to patient care and comfort is clearly very highly valued by the community.

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Contents Key Points ...... 1

Introduction ...... 3

Context ...... 4

Approach taken ...... 5

Principles underpinning identification of level of need ...... 6

Stakeholder Perspectives ...... 7

Key themes from Stakeholder interviews ...... 8

The hospice as a valued community resource ...... 8

Relationships between staff ...... 9

A need for timely, clear and open communication ...... 9

Providing high quality palliative care in a hospital ward ...... 10

Recognition that resources should be used efficiently ...... 11

The best way forward ...... 11

Population based palliative care needs assessment ...... 12

Characteristics of the Cowal community ...... 12

Palliative care activity ...... 14

Conclusions and recommendations ...... 18

Recommendations ...... 19

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Introduction This report has been prepared to assist the Cowal Palliative Care Implementation Group to determine the nature of palliative care in-patient services that are required by the community of Cowal. This report supplements the report ‘Palliative Care Trends and Direction in Scotland’ which was previously provided by the external assessor to the Palliative Care Implementation Group dated 1st September 2011 which highlighted the national context of palliative care.

The aim is to support palliative care implementation group members who are undertaking the palliative care in-patient services review on behalf of Cowal Plan Project Board and NHS Highland Argyll and Bute CHP. Therefore this report should be considered alongside the formal options appraisal process that is currently being concluded.

It is also important to acknowledge that considerable palliative care activity takes place within the person’s own home – delivered by Community Nurses, General Practitioners and others - however the focus of this review is palliative care inpatient services.

The remit of the external assessor is to

1. Provide an overview of trends and the likely future of palliative care services in Scotland 2. Locate the Cowal service developments within that context and advise the PCIG of the likely implications of those trends for developing a service in Cowal 3. Discuss the future of palliative care with key stakeholders as part of the process of review 4. Review and assess the evidence collected to identify the level of need and profile of inpatient beds required to meet palliative care needs of the Cowal community and review any relevant evidence not previously referenced. 5. Review the outcome of the option appraisal process in terms of the number of inpatient beds required and their location and make recommendations: a. Sustainability b. Quality of service both clinical and patient and carer experience c. Implications in terms of costs and potential impact on other services 6. Assist the PCIG to make its recommendations to Argyll and Bute CHP by providing the above and contributing to the PCIG discussions on its recommendations

Consequently, this report contains an independent assessment of the needs of the Cowal community for palliative care in-patient beds and offers recommendations regarding potential ways forward in respect to the provision of those beds in Cowal.

This assessment and the recommendations provided have been developed from the analysis and interpretation of information from three main sources. First, a review of palliative care inpatient service need from the perspectives of a range of stakeholders. Secondly, a population based review of palliative care needs. Thirdly, a review of palliative care activity within Cowal Community Hospital/Cowal Hospice.

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Context The provision of inpatient palliative care services should be viewed in the context of wider changes in healthcare provision. During the last 15 years, as in other areas, NHS services within Cowal – both within the Community Hospital and Community based services – have been involved in considerable redesign and re-development. This has led to the expansion of community based services e.g. Health Centres, Integrated community teams etc and the refurbishment of Maternity and Accident & Emergency Services in Cowal Community Hospital. Over the same time period there has been a planned reduction in the number of inpatient beds for adult services in Cowal Community Hospital from over one hundred to the current provision of twenty five beds.

The recent and continued emphasis in the provision of healthcare services is on shifting the balance of care from an emphasis on hospital services to supporting people to remain at home, developing anticipatory care and avoid unnecessary hospital admissions and procedures, particularly for older people (NHS Highland Director of Public Health Report, 2010). As a result the Cowal Plan Project Board has been established to design the model of care that will best suit Cowal and recommend this to the Argyll and Bute CHP. On behalf of the Cowal Plan Project Board further work is currently underway determining the number of inpatient beds that will be required in Cowal Community Hospital in the future.

In turn, reporting to the Cowal Plan Project Board and the Cowal Locality Management Group, the Cowal Palliative Care Implementation Group (PCIG) had been established to lead and implement equitable, sustainable and effective palliative care services in Cowal. This review of palliative care in-patient beds is therefore part of the wider remit of the PCIG.

It is essential that any healthcare services are consistent with the Scottish Government’s Healthcare Quality Strategy for NHSScotland (2010) which emphasises safe, effective, person-centred compassionate care. It is also important that future provision of palliative care services must be in line with the CHP and NHS Highland’s palliative care action plans based on recommendations from Living and Dying Well (2008) and Living and Dying Well: Building on Progress (2011) two national reports from the Scottish Government that state the national strategy for palliative care.

In other areas of NHS Highland e.g. Mid Highland CHP and North Highland CHP, the national strategy for palliative care is being delivered in partnership with a range of agencies including Highland Hospice which is a multiprofessional specialist palliative care facility led by Consultants in Palliative Medicine. Located in Inverness this hospice provides ten inpatient beds in addition to a range of outpatient and day services including outreach services to Skye, Thurso, Invergordon and Fort William.

In Argyll and Bute CHP palliative care inpatient provision is generally provided in its community hospitals e.g in Oban where palliative care inpatient beds are provided in one of the quieter wards areas of Lorn and Islands rural general hospital. In Cowal palliative care inpatient provision has historically been different, in part because of its geographical location.

Since 1997 the people of Cowal have had access to a discrete palliative care inpatient facility - Cowal Hospice – situated in Cowal Community Hospital in Dunoon. Initially providing two beds and since

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2003 offering four beds this facility provided an enhanced non-specialist palliative care inpatient service with a dedicated environment, a separate nursing team and medically led by General Practitioners.

This facility, when it was first established received its funding in a partnership agreement that identified the NHS as being responsible for funding the building, staff, medication and food while a local charity Cowal Hospice Trust with funds raised from the local community provided equipment, redecoration, furniture, refurbishment and transport.

In addition a hospice day facility was provided from 1998 until 2007 from funding made available by Cowal Hospice Trust for the building extension and the initial staffing cost for six years. The Hospice Trust also contributed to staff costs to support the expansion of in-patient facilities to four beds. NHS reorganisation has resulted in the NHS responsibility for this service passing from Argyll and Clyde Health Board to NHS Highland in 2007 with local responsibility now being the remit of Argyll and Bute CHP, a responsibility that it delivers via the Cowal Locality Management Group. Specialist palliative care support has traditionally been accessed informally from Ardgowan hospice in Greenock.

Approach taken This independent assessment of the need for palliative care in-patient services in Cowal has included

 Discussion with key stakeholders. Individual interviews or small group meetings held with 51 individuals from a range of backgrounds who have an interest in, and a perspective to offer on, the future of palliative care inpatient services in Cowal.

 A critical review of the following:

o The characteristics of the Cowal Community that may influence palliative care need

o The Report on The Evidence of Need for Palliative Care in Cowal (Argyll and Bute CHP 11th May 2011)

o The Report on Service Options to provide Inpatient Palliative Care Service in Cowal Community Hospital; Report of stage 1 and 2 of the Option Appraisal Process (Argyll and Bute CHP 28th June 2011)

o The Report on Service Options to provide Inpatient Palliative Care Service in Cowal Community Hospital; Options Appraisal Stage 3 and 4 Value For Money and Affordability Assessment (Argyll and Bute CHP 13th September)

o The Report on Service Options to provide Inpatient Palliative Care Service in Cowal Community Hospital; Identification of the Preferred Option and Recommendation of the Palliative Care Implementation Group (Argyll and Bute CHP 27th September 2011)

o Additional population, mortality and service activity data provided on request by Argyll and Bute CHP. 5

 Participation in two Palliative Care Implementation Group meetings held on 1st September and 13th September.

Principles underpinning identification of level of need In order to determine the need for palliative care services in any area it is important to recognise a number of key principles that should be taken into account when doing so:

 It is essential to plan services in a way that balances value for money with meeting the needs of the local community.

 Palliative care inpatient services, like all other public services, should be delivered and managed effectively and efficiently. This includes delivering inpatient services in as few clinical areas as is possible.

 The quality of care must be ensured. That is safe, effective, person-centred compassionate high quality care should be delivered for all patients and their families.

 The palliative care needs of people with illnesses other than cancer should be considered as well as the needs of those with cancer. It is estimated that in any population 60% of people with a non-cancer illness will have palliative care needs in the last year of their life in addition to those with cancer related palliative care needs.

 Inpatient services tend to be used for palliative care patients for three main reasons; end of life care, assessment and management of symptoms and provision of respite. While there are likely to be variations over time and in different locations it may be estimated that approximately 60% of admissions to a palliative care in-patient service are likely to be for end-of-life care with 40% being for either symptom management or respite.

 Inpatient beds are only part of the services that patients with palliative care may require – they may also benefit from community services, day services, out-patient services and other services - inpatient provision should be considered alongside these services.

 The need for palliative care inpatient services is likely to be affected by the following factors

Factors decreasing need for palliative care Factors increasing need for palliative care inpatient services inpatient services

 Comprehensive community services  Increases in population

 Access to specialist advice / support  High numbers of elderly people

 Provision of day and outreach services  High number of older people and very old living alone  Coordinated approach to discharge planning  Rural population – geography that makes community based service provision difficult

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 Increased need for respite

 Complexity of illness/ high carer burden

Factors that can either increase or decrease the need for inpatient services

 Referral patterns – these may be traditional or may be linked to geographical realities and transport availability.

 Criteria for admission to the inpatient service.

 Average length of stay – the average length of stay in specialist hospices is approximately 15 days.

 Neighbouring services that cross NHS boundaries. In populations that are dependent on neighbouring NHS Boards for services changes in these services may cause either an increase or a decrease in the need for in-patient services e.g. the population of Cowal uses services provided by NHS Greater Glasgow and Clyde.

Stakeholder Perspectives In order to gain a range of perspectives on the need for palliative care inpatient beds in the Cowal community fifty individual and small group interviews were held with the following:

o 16 members of the local Cowal community – including public representatives on the Palliative Care Implementation Group, Cowal Hospice Trustees, members of the Justice and Peace Group, the Save the Hospice Campaign and the Local MSP.

o 30 Health Care Professionals – including community and hospital based nurses, Allied Healthcare Professionals, managers of healthcare services and a General Practitioner. Some of these participants offered both a professional perspective and their views as a Cowal resident.

o 5 Individuals offering an alternative perspective – including representatives from Argyll and Bute Council, Social Work Services, Cowal Community Care Forum, the Scottish Health Council. Some of these participants offered both a professional perspective and their views as a Cowal resident.

The overwhelming majority of these meetings were face-to-face and were tape recorded to ensure that the richness of the discussion was completely captured. In addition prior to the end of each meeting the key points discussed were confirmed with each participant. Participants were also assured that while the general themes of the discussion would be used the anonymity of each respondent would be maintained. For convenience a small number of interviews were held by telephone.

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In each interview after explaining my role as an external assessor three key questions were explored:

1. What do you think I need to understand about the current situation in order to fulfil my role as external assessor and do my best for the people of Cowal? 2. What do you think that I need to know that will help me understand the particular needs of the community of Cowal as it relates to palliative care? 3. What are your views on the process so far and the way forward?

Key themes from Stakeholder interviews The responses obtained from these questions and the many others that occurred within the discussions were then noted and analysed in order to identify the key themes within the discussions.

The hospice as a valued community resource The majority of respondents, but not all, viewed Cowal Hospice as a highly valued community resource. For many there was not only a sense of personal ownership but also an emotional attachment which for some was borne out of family or friends’ experiences of using the hospice. Many had considerable pride in the fact that the Cowal community had supported the hospice and local palliative care provision for over 15 years.

It was apparent that the participants’ concerns over the hospice was compounded by real fears regarding the future of Cowal Community Hospital and what this will mean for the residents of Cowal. Repeatedly participants expressed their concern that the reduction in inpatient beds in Cowal Community Hospital would eventually lead to the closure of the hospital. As one respondent stated ‘closure by many small cuts’.

Going ‘across the water’ for healthcare - to Greenock, Paisley or Glasgow - was clearly seen by many as a second best option and a particularly stressful and distressing experience for families when someone was dying. The facilities within the hospice building for families and the commitment to family centred, as well as patient centred, care were highly valued.

Many respondents highlighted that there were a significant number of elderly people in the community some of whom had concerns over the quality of care that was provided in some care homes. Having a dedicated facility for palliative care was seen by some as a way of ensuring that high quality end of life care for the elderly was achievable and available. This concern over end of life care for the elderly people in the community was to some extent compounded by the recent closure of the Medicine for The Elderly unit in Cowal Hospital.

However there was also the view that the hospice was seen by many in the community as providing a specialist palliative care service when it did not offer as specialist service but rather offered enhanced palliative care services from a team with a special interest in palliative within a dedicated peaceful environment. It was also reported by some that there was a lack of appreciation of the palliative care provided in the community and the palliative care previously provided in the hospital wards.

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Many respondents recognised that the hospice was not just about in-patient services and stated that the closure of the day hospice was still being felt within the community and that a day hospice facility was ‘sadly missed’.

The volunteer driver service was a highly valued and much praised service that the respondents wanted to ensure continued.

Relationships between staff While the majority of the respondents valued the hospice, some respondents identified that when the hospice was open a ‘them and us’ culture had developed within Cowal Community Hospital. The separate entity of the hospice with its dedicated staff had over the years resulted in friction between some hospice staff and some staff in the hospital. This was reported as arising from situations where the hospital wards were very busy and short staffed and the hospice ward was not and hospice staff were not willing/allowed to assist. This friction was compounded by a number of situations where equipment available in the hospice was not available to patients in the hospital wards.

It was reported that until 2009 strict admission criteria were in place in the hospice with the result that some staff believed that a number of patients who may have benefited from the hospice were not able to do so because they were not accepted for admission or transfer from a hospital ward. These criteria appeared to result in the hospice primarily providing palliative care for people with cancer. The application of these strict criteria appeared to alter in late 2009/2010 when it was felt there was a growing acceptance that palliative care was required by those with non-cancer illnesses as well as those with cancer.

To some extent this friction has been minimised with changes in staff and the amalgamation of the nursing teams that has occurred since the hospice closure. However there was recognition among many members of staff that closer links could be developed between clinical nurse specialists and hospital ward staff in order to benefit patient care.

A need for timely, clear and open communication Many participants expressed their disappointment and unhappiness at the way in which the hospice was initially closed and the subsequent decision not to reopen it, which it was viewed took place without consultation with the local community or the Hospice Trust. There was recognition that this could have been more sensitively handled.

Repeatedly a desire was expressed for the provision of timely and honest information from those with a responsibility for planning and managing services and service change. It was reported that the absence of open and frank information regarding the plans for future general inpatient and palliative care inpatient services in Cowal has resulted in two adverse outcomes; rumour and speculation and a lack of trust between the community and NHS managers.

This lack of trust and suspicion has been exacerbated by the fact that the initial reason for the hospice closure was a staffing crisis in the hospital wards that necessitated transferring the patients and staff in the hospice to the general wards. Some respondents expressed the view that the

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actions taken in the short term to address this staffing crisis have since been used to save money however financial pressures have not been made explicit. All respondents are aware of the financial pressure that public services are currently under and would welcome open and frank communication regarding the ways in which financial restriction are influencing the palliative care inpatient options and how they might do so in the future.

In addition many respondents were aware that a separate group are evaluating the need for inpatient beds in Cowal Community Hospital but are not aware of the output from that group. This is particularly stressful for a small community where employment opportunities are limited and for staff employed within the hospital whose livelihoods may be affected by such decisions.

In particular many participants reported that they were very concerned as to how committed both NHS Highland and Argyll and Bute CHP were to the ongoing delivery of general inpatient services in Cowal Hospital and palliative care inpatient services in particular. Some also expressed their concern that there appears to be a ‘hidden agenda’ by the NHS which was linked to their concerns over the future of the hospital. There is suspicion by some respondents that in current work reviewing inpatient bed provision – both general and palliative – that things are ‘being made to fit’.

It was also highlighted by many respondents that press coverage had at times had a damaging effect on communication and on relationships within the local community. Some press coverage was also reported as having an adverse effect on staff morale and on relationships between the local community and NHS staff.

Providing high quality palliative care in a hospital ward Many, but not all, respondents expressed the view that providing high quality palliative care in a hospital ward was at times very difficult and not ideal. Staff respondents repeatedly highlighted their absolute commitment to providing palliative care to the best of their ability. There was recognition that measures had been taken to adapt the ward environment to meet the needs of palliative care patients.

In almost all interviews the importance of a peaceful environment, privacy and time was stressed as being essential to high quality palliative care. Many respondents took the view that it was very difficult to ensure a peaceful environment and privacy in a hospital ward where at the same time as palliative care patients there might also be confused patients e.g. with dementia or patients admitted with alcohol toxicity. Some respondents compared what is currently available with the hospice facilities and stressed that the facilities in the hospice were such that both patients and families were able to have privacy as well as peace.

In addition, despite a recognition of staff’s commitment to their palliative care patients it was identified that in a hospital ward nursing staff often had little time as they frequently had to deal with a number of conflicting priorities in terms of patient care e.g. caring for an acutely ill person at the same time as a palliative care patient experiencing pain. This was exacerbated in situations where there was only one registered nurse on duty and as a result another nurse had to come from the other ward to check medication.

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Some participants recounted experiences where the palliative care provided in the hospital ward was very good and cited families who were very appreciative of the care received. Others described situations where the patient’s experience of palliative care, and the family’s, was viewed as being distressing. It was clear that these distressing situations were also stressful to those who witnessed them. In addition because of the close knit nature of the community in Cowal some of these difficult situations were known by the wider community and it was felt that knowledge influenced the community’s views regarding the hospice closure.

Many staff identified they had a need for palliative care education and training. Since the amalgamation of palliative care patients into the general wards all staff had received training on the Liverpool Care Pathway but many identified a need for more. Plans to provide training had not, as yet been realised. Few participants were aware that for a number of years the Hospice Trust had a fund for palliative care education that was available to all healthcare staff. It was also identified that staff who had previously worked in the hospice had specific training needs in relation to nursing patients with the range of disorders that are seen in the hospital wards.

Recognition that resources should be used efficiently There was also clear recognition from all respondents that there was a need to plan, deliver, manage and use services wisely and sensibly. It was felt that everyone understood that there ‘wasn’t a bottomless pot of money’. They welcomed evidence that services were being managed effectively and efficiently as long as quality of care was maintained. Many recognised that this required a delicate balancing act by those involved.

Furthermore, there was also considerable concern, and at times anger and frustration, that community money used to upgrade the hospice building in 2009/2010 has never been of benefit to patients or their families. This was felt to be a waste of valuable resources raised by the local community provided in the belief that the hospice would reopen.

It was felt by many that the community was happy to contribute in order that they had a service that was responsive to the particular needs of the Cowal community. A large number cited the volunteer driver service as an example of this contribution and as an example of how the community could work with the NHS effectively. However people wanted to know how their contribution was being used and felt that this could also be more effectively communicated.

In addition some respondents viewed the options appraisal process as being a long drawn out process that was unrealistic and of some concern as it included options that from the outset appeared unaffordable and unachievable e.g. an independent consultant led hospice in Cowal.

It was also the view of some that any savings derived from the hospice closure – savings from staff leaving - should be used for palliative care services.

The best way forward It is fair to say that there were different views on the best way forward.

However there was consensus on a number of points

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 palliative care inpatient services should be available to all patients with palliative care needs - both those arising from non-cancer illnesses as well as people with cancer.

 a suitable environment that ensuring privacy and dignity is essential

 a way forward needs to be agreed and put in place soon.

 establishing closer working relationships between community and hospital staff would be beneficial.

 a sustainable solution is essential.

Continue to provide palliative care beds in general wards. One perspective on the best way forward was to continue to provide palliative care inpatient services in the general wards. The reasons for this were first the belief that staffing 19 inpatient beds is only sustainable across one or two clinical areas and is not sustainable across three. A second reason is a desire to have flexibility by continuing to nurse as one integrated team across the two wards. This allows nursing staff to be allocated on a daily basis depending on the dependency and acuteness of patients in the two wards. Thirdly, this allows all nursing staff to maintain their skills in nursing palliative care patients. Fourth, it is more cost effective. Finally the two newly created single rooms in ward 1 will when it opens offer a large space that can accommodate families. This option was supported by a number of respondents but not the majority.

Provide a separate environment for palliative care inpatients. This view of the best way forward was identified by the majority of respondents including all offering a community perspective. A number of reasons were given. First, it is possible to provide a peaceful environment for patients and families. Secondly, it is easier to ensure privacy and dignity for patients. Thirdly, the needs of families can be more fully addressed. Fourth, nursing staff will have the time and an environment in which to provide emotional and spiritual care to patients and families. Fifth, if the hospice facility is used it will mean that the money spent upgrading it will not be wasted.

Most felt that a dedicated team of nurses was important in order to ensure continuity of care for patients and families. However the importance of flexibility was stressed as patients in other areas should not be disadvantaged. In addition it was identified that some nurses do not want or feel they are not suited to work in palliative care. It was stressed that an education and training programme should be put in place for all staff. It was also felt important that a rotational programme be established to ensure that all nurses maintained a broad skills base.

Population based palliative care needs assessment The need for palliative care services in any area is mainly affected by the size of the population, the demographics of that population, number of cancer deaths and the number of non-cancer deaths. A brief summary of these in relation to the Cowal community is now provided.

Characteristics of the Cowal community Population. Cowal currently has a population of over 16,000 people (Source: General Register Office for Scotland). Approximately 12,000 people live in and around Dunoon and Hunters Quay while 12

others live in communities clustered around Lochgoilhead, Strachur, Tighnabruich and Colintraive and the remaining population in more isolated settlements. It is projected that the population will increase slightly over the next five years.

Older people. Currently approximately 30% of the population of Cowal is over the age of 65 years which is higher than the Scottish average of 20%. This is expected to continue to rise. In addition there are some local neighbourhoods (datazones) where 40% or over of the population are aged over 65 years. Therefore, Cowal has a high proportion of elderly residents and may therefore experience a relatively greater need for palliative care compared to Argyll and Bute and Scotland as a whole.

Percentage of population datazones in people households claiming >=65 15% most deprived income deprived single adult discount Cowal 30 14 16 33 Argyll and Bute 25 8 12 33 Scotland 20 15 15 38

Sources: Mid-year population estimates (2009) Scottish Index Multiple Deprivation (2009) SIMD (2009) income domain Scottish neighbourhood Statistics (2007-2009)

Figure 1: Percentage of Cowal community with population aged 65 years or over, in 15% most deprIved datazones (SIMD) and in households claiming a single adult discount – as compared to Argyll and Bute and Scotland

Deprivation. Cowal has slightly more people who are “income deprived” compared to Argyll and Bute and to Scotland as a whole. However, Cowal does not contain a relatively high number of datazones within the 15% most deprived Scottish Index of Multiple Deprivation (SIMD) rank. However the SIMD is effective at highlighting areas with high concentrations of “multiple deprivation” but does not necessarily highlight deprivation in rural areas effectively. Deprivation may be enhanced in rural locations where services are more difficult to access and Cowal is a rural area.

Single adult households. Approximately one third of households in Cowal have a resident who are claiming single adult discount. There is considerable variation in this across the community with some datazones having almost 50% of the households within it claiming single adult discount. This is less than the average in Scotland as a whole. Claiming single adult discount may or may not accurately reflect single adult households.

Community Healthcare. The Cowal community is served by GP practices in Dunoon, Kilmun, Lochgiolhead, Strachur and Tighnabruaich and by an Integrated community care team that includes community nurses. This is supplemented by a range of services working in partnership with other organisations to support people in their own homes.

Mortality. In Cowal approximately 221 people die each year. Approximately 53 deaths per year result from cancer and 169 deaths are due to a non-malignant illness (Figure 2). It is estimated that

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60% of those who die of non-cancer related causes will have palliative care needs in the last year of their lives, in Cowal this equates to approximately 101 people per year.

Cause of death (2005-2009) Cowal Argyll and Bute source: GROS No. % No. % Heart and circulatory diseases 330 30 1398 26 Malignant Neoplasms (Cancer) 264 24 1470 27 Cerebrovascular diseases 126 11 566 10 Other respiratory diseases (not pneumonia or flu) 67 6 365 7 Pnemonia and Influenza 47 4 190 3 Mental and behavioural disorders (not due to alcohol or drugs) 44 4 281 5 Other diseases of digestive system (not liver disease) 42 4 196 4 Chronic liver disease 30 3 101 2 Diseases of the nervous system 20 2 138 3 Diabetes mellitus 16 1 87 2 Falls 16 1 77 1 Diseases of the genitourinary system 16 1 108 2 Other 89 8 495 9 Total 1107 5472

Number of deaths (2005-2009) Cowal Argyll and Bute Cancer 264 1470 Non-Cancer 843 4002

Annual mean number of deaths Cowal Argyll and Bute Cancer 52.8 294.0 Non-Cancer 168.6 800.4 Figure 2: Cause of death 2005 – 2009 Cowal and Argyll and Bute. Source: General Register Office Scotland

Palliative care activity As well as identifying how many people die, in order to determine the need for palliative care inpatient beds it is also necessary to examine where people die and specifically recent palliative care activity in Cowal Community Hospital and Cowal Hospice.

Place of death. As can be seen in Figure 3 in Cowal - between 2005 and 2009 - 82% of cancer deaths and 61% of non-cancer deaths occur in hospital. (The hospice ward in Cowal is included in “Hospitals” category) Cancer Deaths Cowal Argyll and Bute Type of Institution no. % no. % Hospital 216 82 937 64 Care home 10 4 97 7 Outwith an institution (including at home) 38 14 436 30 All 264 1470

Non-Cancer Deaths Cowal Argyll and Bute Type of Institution no. % no. % Hospital 515 61 2295 57 Care home 110 13 685 17 Outwith an institution (including at home) 218 26 1022 26 All 843 4002 Figure 3: Place of death Cowal and Argyll and Bute by cause of death Source: GROS. Data from 2005-2009

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Therefore having identified in Figure 2 that approximately 221 people a year die in Cowal and in Figure 3 the percentage of Cowal residents that die in hospital it is possible to estimate the number of people with palliative care needs who currently die in hospital based upon all patients with cancer having palliative care needs and two thirds of those who die from non cancer illnesses.

In Figure 4 it can be seen that approximately 111 people with palliative care needs – both cancer related and non-cancer related palliative care - die each year in hospital. These data do not indicate whether the Cowal residents who died in hospital did so in Cowal Community Hospital or Cowal Hospice or elsewhere.

Deaths per year in Cowal 221 Cancer Non Cancer 53 169 Hospital Non Hospital Hospital Non hospital 82% 10 61% 66 43 103

2/3rd paliative care needs

43 68 111 Deaths of people with palliative care needs in hospital per year (hospital unknown) Figure 4: Number of deaths of Cowal residents with palliative care needs who die in hospital

In order to determine how many people die in Cowal Hospital data has been drawn from Cowal Hospital patient administration system (Helix). Consequently Figure 5 presents data from Cowal Hospital patient administration system that indicates that the average number of deaths each year in Cowal Community Hospital is 70. It would appear that approximately 51% of deaths that occur in Cowal Hospital occurred within the hospice (average 36 deaths per year). Numbers of deaths at Cowal Community Hospital Hospice All wards ward only (inc. hospice) 2005 27 65 2006 45 78 2007 34 72 2008 36 69 2009 37 64 2010 (6 mths) 26 32 Total 205 380

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Figure 5: Number of deaths at Cowal Community Hospital 2005 – 2010 (6 mths only) Overall 77% deaths on hospice ward were patients with a diagnosis including cancer. Overall 50% deaths on all wards were patients with a diagnosis including cancer. Overall 17% deaths on wards other than hospice were patients with a diagnosis including cancer. Note the cancer diagnosis indicates the presence of a diagnosis of cancer in the hospital record and does not necessarily indicate cause of death.

Based on these data we can assume that of the 70 people who die in Cowal Community Hospital each year 35 have cancer related palliative care needs. It is impossible to identify how many of the non-cancer related deaths are sudden or unanticipated however if we assume that three quarters of the deaths are anticipated then this gives a total of 61 people who receive end of life care as a result of palliative care needs in Cowal Community Hospital.

Deaths per year in Cowal Community Hospital

70

Cancer Non Cancer

35 35

¾ deaths are anticipated

26 61 Deaths of people with palliative care needs in Cowal Community Hospital (end of life care = 60% palliative care)

Plus symptom management and respite = 40% 40

101 Admissions with palliative care needs

Figure 6: Estimate of number of admissions with palliative care needs to Cowal Hospital each year

In addition it has previously been identified that approximately 60% of the use of palliative care inpatient beds are for end-of-life care with the other 40% being used for symptom management and respite. Using this assumption it is likely that approximately 40 patients with palliative care needs on average are admitted for symptom management and respite associated with cancer and non- cancer related illnesses each year. Therefore it can be estimated that there are 101 people who are admitted to Cowal Community Hospital each year who have palliative care needs.

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It is important also to note that if we compare the data in Figure 4 with the data in Figure 6 this would indicate that each year approximately 40 Cowal residents with palliative care needs die in hospitals outwith Cowal. The reasons for this, and whether this is always appropriate is unclear.

Length of stay As can be seen in Figure 7 the length of stay in Cowal Hospice varies with 43% of patients staying for less than 5 days, 65% staying for less than 10 days and 78% remaining in the ward for less than 15 days. There is a range from 0.01 day to 104.50 giving an average length of stay of 10.22 days. (Average length of stay in specialist palliative care units tends to be around 15 days).

Figure 7: Length of Stay at hospice ward for admissions and transfers April 2008 – March 2010. Source: Patient Administration System (Helix) Days Count 178 mean 10.22 median 6.90 min 0.01 max 104.50

In order to calculate the number of beds required for patients with palliative care needs it is necessary to multiply the number of admissions to Cowal Community hospital with palliative care needs by the average length of stay (Table 8). This can then be compared to the number of bed days available assuming different occupancy levels (Table 9). 17

Average number of admissions Average length of stay Average bed days required per with palliative care needs year 101 10.22 days 1032 Figure 8: Average number of admission as compared to average length of stay in hospice ward

Number of beds Bed days available per year Bed days available per year assuming 100% occupancy assuming 80% occupancy 1 365 292 2 730 584 3 1095 876 4 1460 1168 Figure 9: Bed days available assuming 100% and 80% occupancy

It would appear that based on previous activity within the Cowal Community Hospital and Cowal Hospice that there is a need for between 3 and 4 palliative care beds in Cowal depending on occupancy levels. (In specialist palliative care units on average occupancy levels tend to be approximately 80-84% and seldom go above 85%)

However it is important to recognise that increased community based palliative care may reduce the demand on inpatient beds. On the other hand the need for palliative care inpatient beds is likely to be greater when there is a high and/or growing elderly population, a significant number of elderly people living alone, where people have complex and or very distressing symptoms e.g in some non- malignant conditions, when demand for respite is high and in very rural areas where community service provision is difficult.

Conclusions and recommendations The changes in palliative care inpatient bed provision over the last two years has been a challenging and at times distressing time for the Cowal community and those who work within the NHS in Cowal. The perceived lack of open and honest communication regarding the hospice closure has led to individual interpretation and misinterpretation and a subsequent lack of trust. Suspicions remain that the staffing problems cited as the reason for moving palliative care inpatient provision to the general wards was a ‘convenient excuse’ that was used to reduce costs in order to manage financial pressures that have been alluded to but have not been openly discussed.

There is huge community support for, and attachment to, the previous Cowal Hospice even though there was lack of clarity regarding whether it was a specialist service or not. In addition there is a lack of recognition by the community as a whole that even when the hospice was open there was considerable palliative care provided in the community and in the hospital wards and that this is still the case.

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There is a passionate desire for a continued local inpatient service that avoids going ‘across the water’. There is also a huge commitment to support such a service if it provides high quality care and allows the people of Cowal, who need an inpatient service, to die in peaceful surroundings, with dignity and with the knowledge that their families are being supported.

At the same time because of the considerable reduction in in-patient beds over recent years there is considerable local concern regarding the future of Cowal Hospital and the commitment of Argyll and Bute CHP and NHS Highland to maintain an adult inpatient facility in Dunoon. While there is an understanding of the shift towards more community based services there is a belief that inpatient services are still necessary in Cowal Community Hospital to meet the needs of the community.

The review of palliative care inpatient services in Cowal is separate from, but is linked to, the review of inpatient beds in Cowal Community Hospital. The outcome of this wider review was not widely known adding to people’s suspicions.

The population based approach to determining the number of palliative care inpatient beds required when coupled with a review of end of life care provision in Cowal Community Hospital and Cowal Hospice over recent years would indicate a need for four palliative care inpatient beds (assuming an occupancy of 80%).

It is essential that these palliative inpatient beds are configured in a way that ensures that is consistent with the NHSScotland Quality Strategy that demands that services and care are person- centred, safe, effective and compassionate. It is also essential that any palliative care inpatient service is sustainable and cost effective.

Recommendations 1. Four palliative care inpatient beds should be provided for patients with cancer related and non-cancer related palliative care needs in Cowal.

2. The palliative care inpatient beds must be configured in a way that ensures a quiet, peaceful environment, ensures person-centred compassionate care and maintains the privacy and dignity of patients and families. This will be in line with NHSScotland Quality Strategy.

3. These four beds should not be provided in isolation as that is not an efficient use of the nursing resource and is therefore not cost effective. It is also likely to be unsustainable in the longer term.

4. The 19 beds determined by the bed modelling group should be provided in no more than two clinical areas.

5. The four palliative care inpatient beds could be provided in a six bedded facility with the other two beds being used by patients with high nursing needs but not acutely ill or likely to disrupt the quiet environment.

6. If possible these beds should be located in ward 1 which is currently being upgraded but may require adjustment to provide a less clinical environment.

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7. The remaining 13 beds can be delivered in ward 2. This would offer a significant degree of flexibility and a minimum of six rooms that could be used for single occupancy within the hospital. Refurbishment/upgrading of this ward is clearly required and is recommended.

8. If possible the original hospice building should be used to provide a family support centre within the hospital and to develop day palliative care services (see below). This would allow some benefit to be gained from the community money spent on refurbishing that facility prior to its closure. It would also mean that the day and family support centre and the palliative care in-patient beds are closely located – day service and family support being immediately below the palliative care in-patient facility.

9. The refurbishment/upgrading of these facilities may incur capital costs – it is hoped that the CHP and the community of Cowal will support this as appropriate.

10. In order to ensure continuity of care designated staff should be deployed/recruited to work in the 6 bedded unit where possible based on personal interest. However a programme of rotation from and to the hospital ward is essential to ensure all staff maintain a broad skills base. It is also essential that in times of need a team approach to meeting the needs of all patients in Cowal Community Hospital is adopted.

11. As it was a staffing crisis in the hospital wards that prompted the closure of the hospice – it is recommended that staffing levels and skill mix are reviewed. The excellent work by the Royal College of Nursing on the impact of staffing on patient outcomes and staff is highlighted Guidance on safe staffing levels in the UK.

12. Closer working between nursing staff in the ward, the community nursing team and the palliative care Clinical Nurse Specialists should be actively promoted.

13. A communication plan should be developed and implemented to disseminate the final outcome of this palliative care inpatient service review in a timely and comprehensive manner. It is recommended that use is made of public representatives and those with access to other public organisations. In addition a systematic approach to ensuring that staff are also informed of the outcome should be implemented.

14. A palliative care education and training plan should be developed and delivered to support all staff involved in palliative care provision as soon as possible.

15. Consideration should be given as to how the Hospice Trust could be supported to develop its fundraising and communication profile.

16. Information regarding the availability of funds for palliative care education – if still to be provided by the Hospice Trust - should be more widely disseminated to all staff.

17. The volunteers who drive patients to hospitals should be commended - their contribution to patient care and comfort is clearly very highly valued by the community.

18. The volunteer service should be redeveloped to support palliative care delivery. In time it may be to the benefit of the people of Cowal that this be expanded to support care in the 20

hospital ward. Clear identification of each volunteer’s tasks and activities would be beneficial as would joint training/education with nursing staff as to how staff and volunteers can best work together.

19. Clarification with Ardgowan as to its continuing willingness to provide specialist palliative care advice would be beneficial. If/when this is confirmed this information should be widely disseminated to clinical staff especially those who work outwith Monday to Friday 9am to 5pm.

Although not the primary remit of this inpatient service review the following are also offered

In the longer term

20. It is recommended that a day facility be established to support people to be cared for at home, introduce the concept of hospice and to provide respite for carers. It is likely to be required for no more than two days in Dunoon but an outreach service to other areas of Cowal should also be considered e.g. Tichnabruaich. The area adjacent to the hospice facility or the current ward 2 may provide suitable venues. A mixed day service model is most likely to be beneficial with a social model 1 day and 1 day with a supported self care focus e.g. a fatigue and breathlessness management programme, T’ai Chi, carer education and support and complementary therapies.

21. Consideration should be given to the establishment of an equipment store that can be used as a local resource – again perhaps with community funded support.

22. Consideration should be given as to how to reduce patient travel to get blood checked prior to chemotherapy – this was an issue raised by a significant number of participants.

Dr Jacquelyn Chaplin External Assessor 25th September 2011

Thank you to Sarah Griffin Senior Data Analyst - Argyll and Bute CHP – who provided the data for this report.

References

NHS Highland (2010) Director of Public Health Report, 2010. NHS Highland accessed

Palliative and end of life care in Scotland CEL 2 (2011) http://www.scotland.gov.uk/Resource/Doc/924/0112577.pdf

Royal College of Nursing (2010) Guidance on safe staffing levels in the UK. London. Royal College of Nursing

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Scottish Government Health Department (2008) Living and Dying Well: The first national action plan for Palliative Care in Scotland. Edinburgh. Scottish Government Health Department .

Scottish Government Health Department (2011) Living and Dying Well: Building on Progress. Edinburgh. Scottish Government Health Department .

Scottish Government Health Department (2010) Scottish Government’s Healthcare Quality Strategy for NHSScotland. Edinburgh. Scottish Government Health Department

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