A Review of Care at the End of Life in Hampshire

Hampshire County Council Health Overview and Scrutiny Committee

January 2007

Table of Contents




1. Introduction

2. Scope and Terms of Reference

3. Conduct of the Review

    3.1 Background

    3.2 Identification of Stakeholders

    3.3 Collecting the Evidence

    3.4 `Select Committee' Style Meetings

    3.5 Visits by Members of the Panel

    3.6 Website

4. Findings of the Panel

    4.1 Conclusions

    4.2 Recommendations

    4.3 Policy Context


    4.4 Co-ordination of Care

    4.5 Assessment and Individual Care Planning

    4.6 Day to Day Care

    4.7 Access to Care

    4.8 Specialist Palliative Care Teams

    4.9 Symptom Management

    4.10 Choice in Place of Dying

    4.11 Information and Communication

    4.12 Support to Carers

    4.13 Workforce and Training

5. Appendices

    5.1 Glossary and Definitions

    5.2 Stakeholder Organisations





























The Panel is grateful to Councillor Patricia Banks, the Executive Member for Adult Services, who originally referred this issue to the Health Overview and Scrutiny Committee, as well as to the many people and organisations that gave so generously of their time to both contribute to this Review and inform the Panel about this challenging area of care. Expert advice from Dr Stuart Ward, Professor Martin Servers, Professor Julia Addington-Hall, Lucy Sutton and Sue Dewar was much appreciated.

Additionally we wish to thank the following for their willingness to allow us to see the services they provide at first hand in order to build our understanding of the issues that they were dealing with on a daily basis:

1 Introduction

1.1 Care at End of Life (CaEoL) was identified as a topic for review by the Executive Member for Adult Services. The Health Overview and Scrutiny Committee (HOSC) agreed to undertake the review at the 25 July 2006 meeting, and a Panel was constituted to take its work forward in order to report back to the Committee on 30 January 2007.

1.2 CaEoL is a complex and emotive issue that embraces a wide range of service providers. In recognition of this the Panel comprised six members of the HOSC, two members of the Safe and Healthy People Policy Review Committee and two clinicians, one of whom is a Non-Executive Director of the Hampshire Primary Care Trust (PCT). The powers of The HOSC were delegated to the Panel for the purpose of the review. Members of the Panel were:

1.3 The Panel benefited from the expertise and valuable contributions of Dr Stuart Ward, a GP and previous Chairman of a Hampshire PCT Professional Executive Committee.

1.4 In addition a number of local and national professionals were identified to provide expert advice on issues relevant to the review. A literature review was undertaken, and evidence was gathered concerning services commissioned and provided in Hampshire in order to ensure Members had as complete a background as possible.

1.5 At the first meeting of the Panel it was agreed that this review would be conducted in an open and transparent way. A dedicated website was established to support the review and to disseminate the work of the review as widely as possible.

2 Scope and Terms of Reference

2.1 It was agreed that the scope of the review would focus primarily on people over 65 with advanced disease and who had been judged to be in the last year or months of life. The disease diagnosis could include malignant or non-malignant conditions, and it was also acknowledged that much of the evidence available to the Panel would not necessarily distinguish the particular age group. Such evidence nevertheless provided valuable information about services and care relevant to those in the scope of the review.

2.2 The scope and terms of reference of the review were the subject of the first document published on the website. Key areas for consideration were included within the terms of reference.

Terms of Reference

2.3 The purpose of the Panel was to review the services and care provided for patients/clients who have been diagnosed as being near the end of their lives.

2.4 The cohort of patients/clients included those aged 65 and over

2.5 The review included services provided by:

2.6 The review considered how working arrangements between different services and service providers contributed to meeting national standards, best practice, and related national policy.

2.7 The review considered current practice, but was also informed by data and trends where these suggested changing patterns in how or where care is provided.

2.8 Key areas for consideration included:

2.9 The Panel has:

2.10 The findings, conclusions and recommendations of the Panel have been presented in this report. Readers who wish to access the evidence considered by the Panel may visit the website to access the key documents of interest.

3 Conduct of the Review

3.1 Background

3.1.1 The Health Overview and Scrutiny Committee is committed to conducting its work transparently and openly. It is also the practice of the Committee to proceed on the basis of evidence. This way of working has been followed in the conduct of this review.

3.1.2 Following establishment of the scope of the review and terms of reference, the Committee proposed a series of select committee style meetings in order to learn more directly from stakeholders about the commissioning and provision of services relevant to care at end of life. The experience of stakeholders working in a complex environment and mix of services has been another essential aspect of evidence that needed to be captured through select committee meetings and visits to provider services.

3.2 Identification of Stakeholders

3.2.1 A database of key stakeholders was developed and added to as the review progressed; each one being classified as belonging to one of the following categories:

3.2.2 Initial letters were sent to main contacts for these different groups across Hampshire to inform them of the review and invite their engagement with it. Invitations to contribute to the review were also sent to relevant national organisations.

3.2.3 Subsequently, principal representatives from organisations were contacted and invited to present evidence at the Select Committee style meetings and answer questions.

3.3 Collecting the Evidence

3.3.1 Informed by existing literature from the NHS, national charities and other organisations, the Panel has been able to take advantage of work that has highlighted issues that are relevant and critical to care at end of life. One of the challenges for the review was to seek to determine how Hampshire compares with national findings. Another challenge, however, was to determine how access to care at end of life is provided across Hampshire, the extent to which it meets patients' expressed preferences, and whether patients in all parts of Hampshire have equal access to such care.

3.3.2 At an early stage of the review, a `Literature Summary' and `Hampshire Overview' were produced. The Literature Summary identified issues of significance from national studies and research, while the Hampshire Overview attempted to collate and analyse information from a number of sources brought to the attention of the Panel by key stakeholders and professionals. It was clear that the `Overview' would be a living document that required updating as either better or more recent local information came to light. Both of the documents were put on the Health Overview and Scrutiny website to allow stakeholders and interested parties to read them and comment if they wished.

3.3.3 In addition to desk research, it was important for the Panel to have opportunities to engage with key stakeholders in order to learn not only of the role each plays in providing care at end of life, but also of their experience of working within that complex and challenging environment. Opportunities for this engagement were provided by the Select Committee style meetings.

3.3.4 Visits were also arranged for Panel members to gain a better understanding of some services in situ. Visits were made to all hospices in Hampshire, invitations were offered and accepted to meet with district nurses, and visits were made to the Joint Equipment Stores in Basingstoke and Portsmouth.

3.4 `Select Committee' Style Meetings

3.4.1 Four Select Committee style meetings were held, to which stakeholders were invited to present evidence to the Panel and answer questions. Each meeting was held on a particular theme, enabling the Panel to ask focused questions of stakeholders about their roles and experience. Specifically, it was possible for the Panel to ask questions suggested by the stakeholder's own responses, their presentations, or other evidence received.

3.4.2 Select Committee Meetings were based around the following themes:

3.5 Visits by Members of the Panel

3.5.1 Visits were undertaken by members of the Panel to places of particular interest for the review. For each of these visits a summary report was produced, these becoming part of the evidence base:

3.6 Website

3.6.1 Throughout the period of the Review, a website has provided access to key documents produced for the review, including:

3.6.2 The website also provided opportunity for those using it to comment directly, or to contact the panel.

4 Findings of the Panel

4.1 Conclusions

4.1.1 The Panel is grateful for the feedback and comment from local as well as national organisations with responsibility for commissioning and providing care to people in the last year or months of life. This has been a difficult and complex area of care to review, not least because of the sensitivities and cultural taboos that surround many of the issues associated with death and dying. This does not however detract from the fact that these services are a high priority for the public and must be responsive to the needs of patients and their carers. There are a number of examples of excellent practice in Hampshire, but also areas where improvements need to be made to bring services up to the standards set out in the National Institute for Clinical Excellence (NICE) Guidance, the accepted bench-mark for good practice. The recommendations set out in this report will therefore need to be vigorously followed up by the Hampshire Health Overview and Scrutiny Committee (HOSC) to ensure that these improvements are secured.

4.1.2 Broadly, the picture of CaEoL services in Hampshire reflected that of national studies set out in the Literature Review.

4.1.3 Generally, services for people with cancer are better co-ordinated and more accessible than for people with other diagnoses. The learning from the Cancer Networks and the relevant NICE Guidance needs to be rolled forward to inform the development of services for people regardless of diagnosis. This will not happen without sustained commitment and dedicated funding from the Department of Health, Strategic Health Authorities and Primary Care Trusts. The delivery of training and tools to support front line practice, such as the Gold Standards Framework (GSF) and Liverpool Care Pathway (LCP) need to become a routine element of the performance assessment of those providing care at the end of life, regardless of sector.

4.1.4 National policy in this area and for older people generally, is unacceptably fragmented across different government departments. Demographic pressures and changing patterns of morbidity and mortality, especially for those with chronic illness have not been systematically linked into policy developments for older people. The rhetoric in national policy aspirations for these services needs to be underpinned by practical funded measures to support local action to ensure that the delivery of care is as seamless as possible.

4.1.5 The national priority accorded CaEoL services needs to be clarified. The anticipated strategy for End of Life Care currently being drafted by the Department of Health must address this point, alongside the existing targets, to ensure that these services are not undermined by performance targets that are skewed by an over-emphasis on waiting times.

4.1.6 National regulators such as the Healthcare Commission and Commission for Social Care Inspection must take account of the way in which end of life care is provided across health and social care when they assess performance. This information must be accessible and shared with local stakeholders, patients and the public. The option for statutory agencies to be selective about the delivery of national targets that directly impact on effective service provision, such as the single assessment process, needs to be addressed as soon as possible.

4.1.7 Co-ordination between the statutory agencies is hampered by financial pressures on services and tensions caused by two funding streams, one of which provides for services that are free at the point of delivery, the other means tested. Inevitably this can distort the way in which front line services are delivered, adversely impacting on patients, their families and those providing care. There needs to be a mature national debate about how these tensions can be resolved as the distinction between health and social care becomes increasingly blurred.

4.1.8 Opportunities to bring together budgets for health and social care to secure the greatest effect for the patients and their families need to be identified. In the longer term there needs to be a concerted drive to bring together funding streams for health and social care.

4.1.9 The failure to provide clear and consistent national guidelines on the continuing care needs of people in the last weeks of life is not in the interests of patients, their families or those providing care and can add to the distress experienced at a difficult time. It is essential that the forthcoming national guidance on this issue addresses this point.

4.1.10 Commissioning skills in end of life care are weak, needs assessment is limited, and there is no strategic framework in place to support the co-ordination of care across the statutory agencies. Spending by former Hampshire PCTs (before 1 October 2007) on cancer varied from £ 57 per head of population to £90. The reasons for this variation are not clear and this is an issue that requires early consideration by those commissioning services.

4.1.11 The generous support from communities for these services and the scope for innovative practice that characterises many hospice and third sector services also needs to be recognised by commissioners. Spending by the NHS on cancer and other services is substantially subsidised by this sector. There is significant potential to use this goodwill and experience to draw together the complex web of services to people approaching the end of their lives and direct resources to greatest effect.

4.1.12 Co-ordination of care is better at an operational level, frequently led by hospice and specialist palliative care services. There is however little evidence of co-ordination across the NHS and Adult Services.

4.1.13 Multiple assessments are undertaken by different care providers and can add to the burden on patients and their families. Communications with out of hours (OOH) and community services are variable and inconsistent, resulting in avoidable hospital admission for some patients. The implementation of the Mental Capacity Act is one route through which patient preferences and wishes can become more routinely understood and acted on.

4.1.14 Community support is not provided on a 24 hour, 7 day week basis in a number of areas. The pressures on community staff as a result of unfilled vacancies, and measures to address financial pressures, limit capacity to provide the necessary levels of care. There is emerging evidence that the provision of night nursing services is equal to or more cost effective than hospital admission (see the Marie Curie `Lincolnshire' initiative evidence for example). Locally, figures from the first 6 months of operation of night nursing services in Southampton show cost savings through avoided admissions of nearly £35,000. If the payment by results (PBR) tariff is applied this could double.

4.1.15 Access to equipment to help people stay in their own homes or in the community is unacceptably difficult.

4.1.16 Access to medication is fragmented.

4.1.17 Access to specialist advice and support is provided, primarily through hospice services and specialist palliative care teams but the way in which this is consistently communicated to community and OOH service providers is not clear. This impacts on symptom control in some community settings.

4.1.18 There is evidence that, on occasion, some community and out of hours staff will not attend nursing homes.

4.1.19 There are a number of models of specialist palliative care across Hampshire that are a mix of NHS, third sector and social care funding. Levels of funding from the NHS to hospice services vary from 35% to 3%. Most hospice services reported financial pressures or difficulty in engaging with those responsible for commissioning services. The vast majority of patients accessing hospice services have a diagnosis of cancer.

4.1.20 There is clear evidence of innovative practice across hospice services and specialist palliative care teams, including outreach into communities, and training programmes for staff from different care settings. Other initiatives, such as the pilot being taken forwarded by the SUHT intensive care team, have the potential to allow some people who would otherwise have died in hospital to return home.

4.1.21 All acute hospitals have some NHS funded specialist palliative care although dedicated beds are limited.

4.1.22 There are no clear patient pathways across health and social care.

4.1.23 Protocols to avoid inappropriate interventions or admission to hospital are not in place across the County although there is evidence of emerging practice in some areas that co-ordinate primary care and OOH services.

4.1.24 Record keeping to ensure that patients' preferences are met, are in place across hospice services, specialist palliative care teams and some areas where the GSF and LCP are in use. These are not however consistently in place across the County.

4.1.25 Support to carers is a routine part of the care provided by hospice services and specialist palliative care teams, however this is more fragmented across the NHS and Adult Services. The extent to which carers' assessments are carried out is a specific concern to the Committee. There is no clarity about the lead agency for supporting carers or providing respite care.

4.1.26 Training programmes are in place and accessible to all sectors providing care although pressures on staff can impact on uptake. The good progress made with the introduction of the GSF and LCP to support co-ordination and continuity in care delivery needs to be maintained and embedded in all sectors as a routine part of care. This should be extended to include an agreed mechanism for recording, reviewing and communicating preferred place of care and any advance directives. Funding for this programme is about to finish and it is not clear how the roll-out of this work will be continued.

4.2 Recommendations of the Panel

Recommendations to the Department of Health and National Regulators

4.2.1 Services provided to people who are in the last year or months of life shall not be regarded as an area for disinvestment by NHS Trusts and PCTs in order to meet short term financial pressures. The Department of Health shall take early action to ensure that CaEoL is accorded clear priority in the targets for the NHS and Local Government.

4.2.2 A single funding stream for community services shall be established across the NHS and Local Government to support the delivery of a unified model of care at the end of life.

4.2.3 The forthcoming guidance on the application of criteria for accessing NHS continuing care shall require that the NHS and Local Authorities jointly agree local arrangements for meeting the social care needs of patients and their carers.

4.2.4 The Department of Health, working with the national regulators, shall ensure that the targets for delivering National Service Frameworks are met by the NHS and Local Government and local progress with the implementation of the NICE Guidance can be demonstrated.

Recommendations for Local Action

Co-ordination of Care

4.2.5 Hampshire PCT and Hampshire County Council shall agree a lead co-ordinator for CaEoL services across the County of appropriate seniority to effectively influence service delivery across Hampshire and begin to develop a single unified model of care. This person shall work collaboratively and in partnership with the independent and voluntary sector to progress the recommendations made in this report and shall be identified as soon as possible.

4.2.6 Organisational arrangements shall be put in place to ensure that the agreed lead co-ordinator has the authority to commit resources to identify need and agree commissioning arrangements to secure maximum benefit for patients and their families through the co-ordination of care. This shall include an assessment of the current spend on end of life care in Hampshire across all areas of care provision, including those services provided through the voluntary/independent sector.

4.2.7 Proposals for agreeing the most effective way forward with regard to the potential for joint management arrangements, pooling budgets, sharing training, developing the workforce and constructively managing the tensions caused by conflicting organisational pressures shall be agreed and included in the remit of the lead co-ordinator.

4.2.8 The Lead co-ordinator for CaEoL for Hampshire shall consider the work by Macmillan Cancer Support (the `Care Miles' Initiative) and the emerging lessons from the Marie Curie `Lincolnshire' Project when assessing the most effective way to ensure that CaEoL can be co-ordinated across the County.

4.2.9 The Lead Co-ordinator for CaEoL will take early action with the local NHS and Adult Services to address the variation in service delivery across Hampshire and support front line staff by agreeing the range of services to patients and carers to be provided through the statutory sector.

Assessment and Individual Care Planning

4.2.10 Hampshire PCT and Hampshire Adult Services, working with the independent and voluntary sector as appropriate, shall agree how a single synchronised assessment process, as set out in the NSF Framework for Older People, can be progressed. This shall build on existing good practice already in place in hospice and specialist palliative care services and include

Day to Day Care and Communication

4.2.11 Hampshire PCT shall review the pattern of community/district nursing/allied health professional cover available across the County to ensure that it is consistent and accessible to people requiring care in their own homes or other community settings 24 hours a day, 7 days a week. This shall include identification of lead individuals for co-ordinating care in local settings and confirmation of the support to be provided to nursing homes.

4.2.12 Hampshire PCT, working with all other care providers, shall ensure that information about the services and support available to people who are in the last year or months of life is readily accessible in appropriate formats to formal carers, informal carers and patients.

Access to Care and Symptom Management

4.2.13 Current access to specialist equipment is not acceptable and this issue needs to be addressed as a matter of urgency. Hampshire County Council and Hampshire PCT shall agree a way forward to ensure that there is appropriate funding and availability of equipment from the County Council and NHS in order to meet patient's needs in a timely, appropriate and cost effective manner.

4.2.14 Timely communication and sharing of information across all care providers, both formal and informal shall be addressed as a key part of the roll-out of a Hampshire wide approach to out of hours care. Learning from work already underway with the Ambulance Service in south west Hampshire shall inform this to ensure that patients' needs and preferences for care are met.

4.2.15 Arrangements for accessing appropriate pharmacy support (including controlled drugs) both in and out of hours shall be reviewed to identify and implement good practice to ensure that the needs of patients in their homes or other community settings are responded to in a timely and appropriate manner.

4.2.16 Access to specialist palliative care advice and support shall be identified across all areas and effectively communicated to formal and informal carers, including those providing OOH services.

Specialist Palliative Care and Choice in Place of Dying

4.2.17 Hampshire PCT shall review the needs for specialist palliative care across all care settings to ensure that an appropriate level of service is commissioned and resourced to support people living in their own homes or the community and reduce avoidable admission to hospital. Best practice in hospice services and other partnership working across Hampshire shall inform this work.

4.2.18 Hampshire PCT, working with South Central Ambulance, Adult Services, hospice services, Care Homes and OOH services as appropriate shall ensure clear protocols are in place to respond to patients requiring transfer who may be in the final stage of their illness. This shall include specific protocols to ensure that there is clarity about the resuscitation status of the patients and to avoid inappropriate interventions or admission to hospital. Mechanisms to communicate these protocols to GPs and other front line staff shall be identified.

4.2.19 The comparative audit of patients admitted from nursing homes to hospital at the end of their life planned by the SHA shall take account of the appropriateness of admission and the wishes of the patient. Additionally consideration shall be given to extending this audit to include patients admitted through the OOH and emergency services.

4.2.20 Hampshire HOSC, working with Southampton University, shall identify the costs associated with obtaining feedback from patients and carers about CaEoL services.

Support to Carers

4.2.21 The Director of Adult Services shall provide information on the way in which informal carers' assessments are requested, who conducts these and any timescales that support this process as well as the means by which the client's satisfaction is evaluated (linked with Recommendation at 4.2.10).

4.2.22 In order to promote consistency in service provision, and support front line staff, Hampshire County Council shall publish a County wide policy setting out the support to be provided to informal carers. This shall include arrangements for supporting patients and carers with social care needs where NHS continuing care is being provided (linked with Recommendation 6 at 4.2.10).

4.2.23 Hampshire PCT, in liaison with Hampshire County Council, shall provide the HOSC with additional information about the support available to informal carers including:

Workforce and Training

4.2.24 Hampshire PCT, working with Hampshire County Council and other providers of CaEoL, shall confirm funding and arrangements for the continued roll-out of the GSF, LCP and other training programmes that support the delivery of general and specialist end of life care.

4.3 Policy Context

4.3.1 CaEoL is a challenging topic area, partly because of the strong emotions it can generate, but also because it can be difficult to determine when a person is actually reaching this point in their life. Much of the research evidence used to inform this review was drawn from work done in relation to cancer, although more recently there has been a concerted push to broaden understanding of a wider range of people with different diagnoses, particularly with chronic disease, who are moving to the end of their life. This move from looking at cancer care to the needs of a wider cross section of the population who have needs in the last year or months of life is increasingly reflected in both policy and research in this area.

4.3.2 `Our health, our care our say' includes specific reference to the action that the government intends to take with regard to end of life care across the population. This will include steps to:

4.3.3 The Panel welcomed this commitment but was not able to ascertain what this might mean for people living in Hampshire.

4.3.4 The NHS End of Life Care Programme was launched in 2004 with a budget of £12 million to improve end of life care for people, irrespective of diagnosis. It also seeks to give patients greater choice in their place of care and death. This includes reducing the number of emergency admissions to acute care of those who have expressed a wish to die at home as well as reducing the number of patients transferred from care homes to acute care in the last week of life.

4.3.5 All SHAs are participating in this programme, although there is wide variation in progress. Partly this is because the programme is locally driven and SHAs have different priorities. Some work, with care homes for example, is in the early stages although the recent guidance produced by the programme to support further work in this area has been enthusiastically received

4.3.6 Work is also underway to manage some of the issues that arise when palliative care patients need to access Out of Hours (OOH) and emergency ambulance services to ensure that patients are transferred to the correctly to the right unit, there is clarity about the patients resuscitation status and that inappropriate interventions are avoided. It is not clear how the recent reconfiguration of SHAs will impact on this work in the future, or if PCTs will now take the lead in taking this forward.

4.3.7 The CaEoL programme has developed a number of models of best practice to inform local commissioners and providers of care. These include:

4.3.8 The National Council for Palliative Care (NCPC) is an umbrella organisation for all those who are involved in providing, commissioning and using hospice and palliative care services in England, Wales and Northern Ireland. It promotes the extension and improvement of palliative care services regardless of diagnosis in all health and social care settings and across all sectors to government, national and local policy makers. The NCPC has been influential in shaping national policy on palliative care, not only across cancer services but a number of other conditions as well as the needs of older people. The NCPC is currently working closely with the NHS End of Life Care Programme and others on an `End of Life Care Strategy' that will cover all who need palliative care, regardless of diagnosis. This is expected to be published later in 2007.

4.3.9 Older people constitute a large proportion of the population of Hampshire and this figure is growing. The care that people receive in the last year or months of life must be understood in the context of the wider needs of this population. Palliative care and support must therefore be embedded into overall policy for older people's services and an integral element of the care received. This means CaEoL needs for people with serious chronic progressive illness has to be more widely recognised and managed within mainstream policy for older people.

4.3.10 The findings of the recent review of progress with the NSF for Older People highlighted the following issues:

4.3.11 The response from the government to these findings supports the need for there to be clarity about end of life care for people living in care homes as a priority and the need to continue to support the local delivery of the best practice models in home settings and hospitals to enable `dignity in care'.

4.3.12 These issues are equally relevant for care homes (personal care and nursing), which are settings where a substantial number of people may end their lives. It is therefore essential that, when looking at services for people who require palliative or other supportive care, the needs of care homes are recognised and responded to by health and social care professionals, particularly with regard to training and access to specialist palliative care staff.

4.3.13 A Guide for Care Homes was published by the NHS EoLC Programme and NCPC in Spring 2006. This sets out the issues that care homes may wish to consider in the context of care at the end of life and describes the resources available and how these can be used to improve care. Additionally some useful definitions of the terms commonly used to describe different types of care are included. These have been used inform this review process (see Glossary).

4.3.14 Details of the published research and the Literature Review are available on the website.

4.3.15 The Findings of the Panel are set out in detail in the following sections of this report as a series of 10 commentaries covering the following key areas:

4.3.16 None of these areas exist in isolation and there are strong interrelationships and common themes that were reflected in the feedback that the Panel received as well as its findings.

4.3.17 During the life of the Panel there were significant changes in the way in which the Primary Care Trusts were configured, moving from 7 separate organisations to just one on the 1 October 2006. To accommodate this change, and reflect the variation in practice identified, the commentaries refer to geographic areas in Hampshire. Broadly these are as follows:


4.4 Co-ordination of Care

What the Research Evidence Says

4.4.1 The lack of co-ordination of care between agencies and within individual organisations is a recurring theme in the literature about the patient's experience of care at the end of life (CaEoL). Agencies involved in providing care should be working collaboratively around the needs of patients, sharing information and needs assessment to provide maximum support to patients and their families and others involved in providing care. Staff providing care need to have access to the training and networks that will provide them with the skills to assess and respond to these needs. This is particularly important as most patients will spend a majority of their last years based in the community, either at home or in a care home.

4.4.2 Co-ordination of care should avoid unnecessary duplication, which can lead to confusion and waste of scarce resources. Care therefore needs to be co-ordinated at both strategic (commissioning) and operational (delivery) levels to ensure that patients' needs are recognised and services are easily accessible. Poor communications between the different agencies can lead to services failing to meet an individual's need or a lack of services due to inadequate commissioning funding or workforce capacity. As much supportive and palliative care is provided by the voluntary sector there should be clear partnership arrangements for service planning and commissioning.

4.4.3 Those primary care teams that are working with the Gold Standards Framework (GSF) should be able to identify patients that may need CaEoL. The recent Quality Outcomes Framework (QOF) includes indicators for palliative care which are linked with a financial incentive. These include an expectation that GP practices will have a register of people with palliative care needs regardless of diagnosis and that this register is regularly reviewed to ensure that patients needs are being met.

In taking evidence the Panel was keen to identify the following:

The Findings of the Panel

4.4.4 In considering the commissioning arrangements around these services the Panel recognised the significant changes in the configuration of both SHAs and PCTs that took place in the latter half of 2006. This has caused considerable uncertainty for some staff, and changes in personnel have meant that key people simply aren't in post in some instances. Having said this, the NHS and Department of Health have given repeated assurances that business continuity would be a priority and the Panel has therefore proceeded accordingly.

4.4.5 The Panel received no evidence that the care for people who are in the last year or months of life is co-ordinated across the agencies for commissioning care. There is some evidence (see North Hampshire submission) that there are strong local arrangements in place, primarily driven by clinical staff and individuals who champion these services. A Rapid Response Service in the Southwest, jointly provided by Adult Services and the PCT and run by the former, is another example of a successful partnership. However, there is little evidence in the feedback received to give confidence that there is an agreed strategic vision of these services, supported by needs assessment of the population served. It is of concern that some respondents with commissioning responsibilities confused individual needs assessment in terms of service provision with the population based needs assessment that drives commissioning processes.

4.4.6 The principle source of information regarding commissioning came from the needs assessment document produced by the Central South Coast Cancer Network. However, this body does not cover all of Hampshire and includes some areas outside the County boundaries. The Cancer Network that covers the north east of Hampshire has not yet published a needs assessment. Figures produced by the Kings Fund in August 2006 suggest that the spend on cancer across Hampshire varies from £57 (Blackwater Valley and Hart PCT) to £90 (New Forest PCT) even when adjusted for variations in population. The reasons for this variation are not clear.

4.4.7 The Cancer Networks have no statutory responsibility for developing a planned approach to end of life care, nor are they able to ensure equity and consistency in service provision. Effectively they have responsibilities for improving services with no formal authority to commit resources. Work currently in hand at the Department of Health to develop a strategic framework for commissioning end of life care will have little impact if it does not address these issues of responsibility and accountability.

4.4.8 The Panel would wish to challenge the suggestion of some commissioners that the block contract is a suitable vehicle for providing CaEoL (see south east Hampshire submission). Some commissioners have Service Level Agreements in place for end of life services but the Panel is not clear how these reflect identified need within the population. Whilst there is reference to patient pathways, in the south east Hampshire submission the Panel was unable to obtain any additional information on this development.

4.4.9 Marie Curie Nursing services reported that there are 9 contracts in place for their nursing services but not all relevant commissioners indicated that they are aware of this service. Despite reports of pressures on support for people out of hours, each of these contracts was underspent in 2005/06.

4.4.10 Funding provided through the NHS Care at the End of Life Programme amounts to just £120,000 per annum over a three year period, a tiny amount to support the ambitious aims of the programme. Some areas are able to identify exactly where this had been targeted; others demonstrated no awareness of this. Not all commissioners are able to identify the total funding that went into end of life care in terms of specialist services and there is variable information about funding for generalist services.

4.4.11 There are mixed responses to the question about performance monitoring of palliative care services. One area reported that this does not take place formally although there are opportunities for discussion and review between commissioners and providers. Southwest Hampshire expects all commissioned service providers are expected to meet Health Care Assurance Standards; another response stated that all activity is monitored through the block contract.

4.4.12 A significant amount of work has been done to embed the Gold Standards Framework and Liverpool Care Pathway into GP practices, NHS Hospitals, hospices, community services and care homes. There is however a significant amount of variation in the reported uptake of these tools within different areas and sectors leading to uncertainty about actual progress and the benefits this is bringing for patients and their families. Funding for this work will cease after March 2007 and there is no clarity about how this programme will be rolled out across Hampshire if additional central funding is not made available.

4.4.13 Respondents agreed that the role of commissioning is important in shaping local services, as is co-ordination across care givers. Most respondents saw this as a priority PCT function, but it is not clear how this would be factored into the development of actual arrangements to ensure consistency in service provision and access across all aspects of care. The way in which practice based commissioning could inform the provision of CaEoL services, particularly with regard to the co-ordination of care in the community has not been explored although work is in hand to look at both OOH provision and the future of community hospitals.

4.4.14 OOH services are identified as being problematic, particularly around communication and information sharing but it is not clear where responsibility for addressing this issue lies. Whilst the GPs will play a key role shaping the form of OOH provision, the importance of a strategic approach to commissioning that considers all aspects of emergency and unscheduled care provision is underplayed. Hampshire still has a variety of OOH service providers and to date there seems to be little evidence of the consequent variation in service delivery being addressed.

4.4.15 Access to medication, specialist advice and equipment during out of hours is consistently identified as an issue at the point of service delivery. It is essential that this is taken into account by the PCT when commissioning these services.

4.4.16 Equally there are wide variations in reports of the community care available 24 hours a day, 7 days a week. Some areas provide district nursing round the clock, some provide day and twilight cover, and some provide only day care. Overall there is a lack of consistent access to these services and no evidence of a strategic approach to commissioning them.

4.4.17 Some respondents expressed the view that commissioning of OOH care takes account of specialist advice and support and access to medication, whist others expressed the view that these are all areas requiring improvement.

4.4.18 Access to equipment is universally identified as the single most important issue to be addressed both in and out of hours with some reports of convoluted routes for getting equipment to patients in a timely way. Discussions with the NHS and Adult Services about how to address this has focused primarily on finances rather than getting the service right. The Panel therefore warmly welcomes the action currently being taken to respond to demand for these services and expects that there will be early action to remedy the problems identified. Assurances that patients with palliative care needs are prioritised by these services are helpful, however this did not mean that the equipment required is actually provided in a timely way. This matter is returned to in more detail under `access to care'.

4.4.19 There are no joint commissioning arrangements with Adult Services, despite the fact that there are a number of assumptions about where responsibility for co-ordinating care rests. Respondents variously identified care managers, GPs, district nurses and specialist nurses as being responsible for co-ordinating care for people at the end of their life. Dedicated social work input did exist in some hospice/NHS settings (and is highly valued) but it is not clear how or why this had been put in place. There is some evidence of early stages of planning for commissioning services across agencies as outlined by Adult Services and a significant opportunity exists for taking this work forward in partnership with health.

4.4.20 Issues relating to funding, particularly with regard to continuing care, support to carers and respite need to be addressed, and a consistent approach agreed. It is not helpful that different protocols exist in different parts of Hampshire.

4.4.21 An issue repeatedly raised by respondents is the problem caused by the different funding arrangements for health and social care; health is free at the point of delivery whilst social care is, by law, means tested and charged for. In a system where both health and local authority services are under increasing financial pressure this creates a significant deterrent to collaborative working, as can been seen with the on going problems associated with the joint equipment store and access to continuing care. The Panel therefore noted with interest the initiatives being taken through the Cancer Network working with Macmillan Cancer Services on the Care Miles Project, though this is in the early stages of development, and the work of Marie Curie in Lincolnshire looking at the costs of care in the community.

4.4.22 There is more evidence that the different agencies providing services worked collaboratively to co-ordinate them, and a number of examples of good practice are identified, often focused around hospice and specialist palliative care services.

4.4.23 Previous work in south east Hampshire identified the need for a `key worker' role but this has not been taken forward. District nurses or the new `community matrons' are frequently identified as natural co-ordinators of care but their current workloads leave little time for this role. Financial constraints on these services have also resulted in the teams having to manage long term vacancies and limited access to bank nurses. An increase in scheduled care also restricts the flexibility to respond to unscheduled requests for support.

4.4.24 Adult Services reported that it expects that care homes make provision for OOH, equipment, medication and advice.

4.4.25 A number of respondents identify the LCP as the main route through which information about the patient's needs and preferences is shared. As this is only used in the last few days of life, there is an issue of how different agencies share information prior to this point to provide maximum support to patients and their families. This is well developed in hospices and the services they provided but is in the early stages of implementation in hospitals, NHS community services and care homes. Where LCP facilitators are in place they are able to work with specialist palliative care teams to ensure a more consistent approach to the application of the LCP.

4.4.26 One hospital reported that work is in hand to co-ordinate some cancer care across hospital and community services but this did not include end of life care.

4.4.27 Generally, hospitals reported that co-ordination of care rested with ward staff or palliative care teams. SUHT and Countess Mountbatten Hospice noted the benefits of an integrated service under one management structure. Multi-agency working is an important aspect of care with regular meetings that includes a range of staff such as social workers, discharge co-ordinators, therapists, spiritual representatives, oncologists, anaesthetists and pharmacists. One Trust reported that ward staff are responsible for co-ordinating care assessments. Countess Mountbatten Hospice highlighted the value of the `Pallicare' system for supporting communication across different care providers. Only one area (North Hampshire) commented on the need to improve co-ordination of care with care homes. `Key workers' have been identified to work with patients to address this issue but are not noted by other service providers.

4.4.28 Adult Services reported that there is currently no formal co-ordination across care settings although Registered Managers have regular meetings with GPs, district nurses, practice managers, care managers and palliative care specialists. Input from other care providers is available according to need. Where social workers are in place to provide support to the palliative care team this is highly valued. North Hampshire reported that proposals are under consideration to appoint a joint Adult Services /Health social worker.

4.4.29 Overall, services are better co-ordinated for people with cancer, although there is progress being made in a number of areas to ensure that services are available regardless of diagnosis. In acute hospitals, terminal non-cancer patients can be cared for in a number of departments although it is noted that not all nurses are trained to provide palliative care. All acute hospitals have access to specialist palliative care teams to support staff regardless of the patient's diagnosis. Specialist palliative care teams also provide services in the community in North, Southwest and Southeast Hampshire.

4.4.30 The Panel only has limited feedback from other service providers such as those providing residential and domiciliary care; this is however an important aspect of the network of care provision that allows people to stay in their own homes. With regard to domiciliary care it is reported that co-ordination comes mostly through Adult Services but that this can be problematic with the service provider not knowing if a person had been admitted (or discharged) until contacted by an informal carer.

4.4.31 Professor Addington-Hall and the representative from Hampshire CABx highlighted a specific issue around the burden that can be placed on carers in co-ordinating care across a wide range of needs that go beyond health and social care. People may need support to access benefits, deal with debt or ensure that the full range of support available is provided. This may come from the statutory or voluntary sector, but informal and social networks are equally important. Carers can be put in the position of having to become `experts' about the services they need to access in order to ensure that the patient's needs are met.

4.4.32 Access to services out of hours is an issue for many respondents and this is dealt with in more detail later in the `commentaries'.

4.4.33 The Panel is not able to identify a lead for co-ordinating care across Hampshire with respect to CaEoL services with both responsibility and authority. Strategically, the Cancer Network is currently the key focus for this work and, despite the limited funding available there has been clear progress with the roll out of tools such as the GSF and LCP. The approach taken has been inclusive, and concerted action has been taken to include care providers in community and care home settings. The Networks have no authority to require action by PCT's or NHS Trusts.

4.4.34 There are no joint commissioning arrangements in place between health and adult services.

4.4.35 The Panel is not able to identify a clear lead for co-ordinating the commissioning of services that support care at the end of life, based on identified need. Services appear to be ad hoc, based on historic patterns of care and local circumstances rather than planned on the basis of the needs of the population affected. The Panel therefore came to the view that this is a weakness that needs to be addressed by the statutory agencies concerned as soon as possible.

4.4.36 At an operational level there are identifiable key leads in different areas, but this varied according to the configuration of services. The contribution of hospice services and specialist palliative care teams in innovating and leading service development is significant.

4.4.37 Overall services tend to be better co-ordinated for people with cancer than those with other diagnoses. In part this can be attributed to the complexity of the services that an individual may need, different approaches are taken by different organisations, and the difficulty of predicting the course of some illnesses. Equally the Panel has noted that there is a consensus that patients and their carers should be able to access similar levels of service regardless of diagnosis. Without a robust needs assessment it is not possible to ascertain how this aspiration can be delivered. Without effective commissioning it is unlikely that end of life services in Hampshire will be consistent, responsive and equally accessible to local people.

4.4.38 From the patient's perspective, health and social care are inextricably linked and each can have an impact on the other. The Panel is in no doubt that the way in which health and social care are currently funded has a significant and detrimental impact on the ability of services to come together to meet the needs of patients and their carers.

4.4.39 There is limited evidence of partnership arrangements across different agencies and this varies significantly across all areas.

4.4.40 Similarly the Panel is able to identify some good practice relating to sharing information and information following the patient through the progression of their condition, but this is the exception rather than the rule.

4.4.41 There is inconsistent and limited information about the way in which patients' needs and preferences are communicated within teams and with other providers of care.

4.4.42 There is no identified agency responsible for working with patients and their families to co-ordinate care for individuals.

4.5 Assessment and Individual Care Planning

What the Research Evidence says

4.5.1 Appropriate assessment of an individual patient's needs is a key step in ensuring that they receive the care they require. Further, patients should not be subject to unnecessary repeated assessments from different professionals seeking similar information. There should therefore be either a single or common assessment process in place, with links to other services that provide continuing care and social support. Often patients will be the most effective assessors of their needs so the tools used should be able to help them to do this. Assessments should therefore cover all aspects of CaEoL, including the preferences of patients and carers.

4.5.2 The NSF for Older People includes a standard aim to have a single assessment process in place across health and social care by April 2002. The review published in March 2006 commented that none of the communities inspected had introduced a model of single assessment across all partner organisations in the area, this is consistent with CSCI's finding in 2004/05, that only 6% of local authorities had a single assessment process in place for health and social care.

4.5.3 There needs to be a defined pathway through which key information recorded in patients' notes is communicated to other professionals involved in providing care or support. Record keeping (including recording and sharing patients' preferences for care) is essential in ensuring their needs and wishes are understood.

4.5.4 Members of the Panel therefore sought evidence of the following:

Findings of the Panel

4.5.5 There is repeated reference to the importance of a single or common approach to assessment in the responses provided to the Panel. Some PCT areas reported that it is in place and working well (Southeast Hampshire) whilst others identified it as an issue requiring attention. Adult Services confirmed that there is no agreed single assessment process in place across health and social care, although part of the care management function is to co-ordinate multi-agency assessments.

4.5.6 The Central South Coast Cancer Network referred to a single assessment package that has been commissioned by the Department of Health and would be available later this year. It is not clear how widely this will be applicable across services regardless of diagnosis or if it will be able to be used across care sectors.

4.5.7 A range of assessments is undertaken, including assessment for NHS continuing care and some areas had arrangements such as joint working between district nursing and intermediate care services to promote closer co-operation. Others viewed regular multi-disciplinary palliative care team meetings as the route through which assessments are most effectively conducted.

4.5.8 Adult Services noted that sharing information across health and social care teams could be positive but sometimes difficult particularly around issues of confidentiality and a patient's prognosis. This is a particular issue where patients are reaching the last weeks of life and Adult Services required a clear prognosis in order to apply for PCT funding.

4.5.9 The Phyllis Tuckwell Hospice reported an effective `fast tracking' system with Hampshire PCT for continuing care assessments providing a possible way of addressing issues identified by other areas.

4.5.10 The difficulties caused by tensions around responsibility for continuing care can mean that there is no clarity about how any social care needs will be met. People with a terminal diagnosis may not therefore have any direct involvement with social care staff.

4.5.11 North Hampshire reported plans to pilot a palliative care social worker to work across health and social care to improve the co-ordination of care to patients and address some of the difficulties caused by funding arrangements.

4.5.12 The OOH initiative in Southwest Hampshire has developed a reporting system which is initiated by the GP practice and, with the patient's permission, shared with the ambulance and OOH service. This allows for a more targeted response to any calls received and for OOH clinicians to access specialist palliative advice as required. This facilitates appropriate support being provided to patients and carers in a crisis.

4.5.13 Hospice services and specialist palliative care teams view individual care planning as a key part of their normal service. This is reviewed regularly. Patients can keep these records so they are available to others involved in providing care. There can be problems in ensuring continuity and consistency between different sets of records when some notes are kept in patients' homes and others not.

4.5.14 Feedback from the independent sector highlights issues relating to care plans that do not arrive, are out of date or incorrect causing situations where patients are admitted to a home that is unable to meet their needs. Although PCT assessments can be efficient at assessing nursing band, trying to agree a change of category with Adult Services can take over a year. Each agency does its own assessment which can be inconsistent in format and content.

4.5.15 CABx reported that it is not uncommon for patients to have difficulties in establishing an appropriate treatment regime because agencies providing care fail to link up or communicate effectively.

4.5.16 Overall more information is available on the assessment process for cancer patients than non cancer patients.

4.5.17 Difficulties in making an accurate prognosis about a patient's life expectancy were highlighted on a number of occasions, particularly with regard to those patients who had conditions other than cancer. Staff providing general day to day care require training and specific skills to properly assess individuals' needs. Where funding depends upon assessing a patient to be in the last 8 weeks of life, it further complicates this issue and can mean that the needs of patients and their carers are not met.

4.5.18 The differences in funding arrangements also have an impact on assessment processes as does the variation in the requirements of national targets. The NSF for Older People for example, has a target of a single assessment process to be in place for 2002. Responsibility for this rests with Local Authorities, however delivery of this is discretionary and usually affected by the resources implications associated with the target.

4.5.19 CSCI were contacted to verify the current position with respect to progress with the single assessment process in Hampshire but declined to provide any information, beyond referring the enquiry back to Adult Services.

In Conclusion

4.5.20 The Panel could find only isolated evidence of any assessment processes that are unified across care providers and none of these matched the intended approach suggested in the NSF for Older People. Some assessments are carried out with patients and carers but these are generally confined to areas with strong hospice/palliative care support. Even then other notes may be kept be other professionals, which in turn can lead to problems with conflicting information.

4.5.21 There is contradictory information about the way in which Adult Services, the NHS and the voluntary/independent sector work together to assess need and respond accordingly. Issues relating to access to NHS continuing care is particularly problematic and need to be addressed.

4.5.22 The Panel does not therefore consider that it received sufficient evidence to enable it to be confident that assessment processes are able to accommodate changes in patients' needs over time.

4.5.23 There is no evidence of clear communication strategies for sharing information across all sectors.

4.6 Day to Day Care

What the Research Evidence says

4.6.1 People with advanced chronic illness will normally receive much of their care in a community setting, be that their own home or a care home. It is important therefore that services provided by primary care, community care, Adult Services, hospitals, hospices and care homes are not only well coordinated, but that staff are appropriately trained and able to access specialist equipment, advice and support as required.

4.6.2 Effective communication across teams and with patients and carers will be an essential part of the provision of high quality services, allowing patients' concerns and preferences to be understood and responded to. Face to face communication is frequently the preferred way of information giving and it is often non specialist staff that will be providing this. Additionally, patients cannot express preferences about their care without access to appropriate and timely information. Research emphasises the need for staff to have training in the skills required to respond to questions and issues raised by patients. Information of high quality should be readily available when the patient or their carer needs it.

4.6.3 Those providing day to day care to people who are approaching the end of their life should be able to:

4.6.4 Timely co-ordination across the different agencies providing care is essential if they are to be responsive to the needs of individual patients, which may change very quickly.

4.6.5 Members of the Panel sought to understand the extent to which day to day services are able to reflect the following:

Findings of the Panel

4.6.6 A number of commentators highlight the `Treasure Trove' training programme as an example of good practice that provides basic palliative care education and training for community nursing staff and care home staff. This is funded by contributions from PCTs and Specialist Palliative Care budgets. The Care Homes Education Project, developed through Local Authority Care Home leads and the SHA commenced in October 2006 and is cited as a national example of good practice.

4.6.7 The SHA reported that the GSF is being implemented in 58% of practices across Hampshire with the majority using this to support all patients with palliative care needs although the extent of take up varies considerably across areas from 17% to 73% (according to figures for August 2006). Facilitators are in post in primary care (although these are all on short term contracts). A number of these posts were due to end in October 2006 and this initiative is being actively supported by community nurse management. PCTs reported that the dedicated time of facilitators is under pressure as community nursing services experience increases in demand, unfilled vacancies, and the need to cover sickness absence. Even when patients' needs are identified through the GSF it can be difficult to respond to these due to the current financial pressures on health and adult care.

4.6.8 The impact of the GSF in supporting day to day care is not clear with some reports of a `flurry of referrals' following practice meetings. It is yet to be established if the GSF is generating more referrals through an increased awareness of palliative care principles, or if patients are simply being identified earlier.

4.6.9 North Hampshire reported that dedicated co-ordinator posts to support the GSF and LCP would commence in October 2006 funded for 12 months.

4.6.10 Southeast Hampshire has a dedicated LCP facilitator for the Portsmouth Hospital and for nursing homes and community hospitals. A roll out of this work is planned in 2007/08 to include community nursing teams and the Rowans Hospice.

4.6.11 District and community nursing on a 24 hours a day, 7 days a week basis is only available in some areas (e.g. Eastleigh South) and the absence of this is repeatedly identified as a problem in enabling patients to stay at home or in the community.

4.6.12 Southeast Hampshire reported that district nursing is accessible out of hours and twilight nursing is available although there is some difference about whether this is available on a 24 hours a day, 7 days a week basis and whether liaison between acute staff and Adult Services is effective.

4.6.13 North Hampshire confirmed that community services are available between 8 a.m. and midnight with OOH services providing more limited care at other times. District nursing services are available 8a.m. to 6p.m. and a rapid response team from 8a.m. to midnight for some patients. In mid Hampshire district nursing is available from 8am to 10pm and no ring fenced money is available for these services, planned investment having been deferred due to the financial position of the PCT.

4.6.14 Adult Services reported that two Hampshire County Council nursing homes are currently beginning to implement the GSF. The intention is to introduce the GSF into the remaining nursing homes but it will be a phased implementation. Other respondents suggested that more nursing and care homes were participating in these initiatives.

4.6.15 The LCP is being implemented in at least one ward in all acute Trusts, some community hospitals, four hospices and several community teams. Sustained facilitator support is required to deliver full implementation but it is not clear if the funding for this is available.

4.6.16 One PCT (Southwest) reported a strategy that integrates community services, with rapid response/intermediate care teams to give fast access to multi disciplinary teams. It also plans to integrate health and social care management but was not able to provide further information on the form this may take.

4.6.17 One area reported that there is no need for protocols for determining responsibilities for different aspects of care provision whilst others suggested that difficulties around responsibilities for funding did impact on the provision of services particularly with regard to NHS continuing care provision.

4.6.18 Access to medication varied across Hampshire. In the Southwest there are arrangements with local pharmacists to allow access out of hours and consideration is being given to the introduction of anticipatory drug packs. The Southeast reported that medication is easily accessed out of hours whilst the North noted that access to pharmacies is variable. North Hampshire confirmed that as not all pharmacies stock palliative care drugs there can be delays in starting treatment. It is hoped that a recent agreement with the OOH provider to stock this medication would improve the situation and `just in case' boxes are planned to include non-controlled drugs but support from the PCT is required to enable this to happen. Hospices reported having access to medication through their own arrangements, for example, Countess Mountbatten has access to SUHT's pharmacy.

4.6.19 Adult Services reported that nursing and residential homes made provision for OOH equipment, medication and advice. Nursing homes have some equipment and residential care homes are able to access community stores. The Reception and Assessment Teams have responsibility for ensuring consistency in service provision. All service users are assessed for need regardless of diagnosis. Access to advice about care at end of life is generally available via hospices, and in some instances district nurses and night sitting services are available although this varies across different areas.

4.6.20 GPs may be reluctant to participate in `just in case' medication pilots, and this reduces options available OOH. Nursing homes are unable to stock drugs without a licence. South Central Ambulance Service now stocks a supply of controlled drugs at their control centre; these drugs can either be ordered by a GP or provide access to appropriate medication in a crisis.

4.6.21 A national shortage of diamorphine was highlighted by some respondents. This can mean that the drug or first choice is not always available and delays can occur when alternatives have to be prescribed. Staff also need to be properly trained to ensure that they are confident in using the type of equipment (e.g. syringe drivers) required to administer some drugs and may seek support from district nurses or other specialist nurses. If, as reported by Adult Services, district nurses are sometimes reluctant to go to homes that employ their own nurses, this could cause further avoidable problems and delays. Some reports suggest that OOH services can refuse to visit nursing homes, and on occasion staff have to battle to prevent residents being admitted to hospital inappropriately. These issues need to be robustly addressed, and records of patients' resuscitation status need to be regularly reviewed.

4.6.22 Improved communication is required to prevent inappropriate admissions, and to ensure that OOH staff understand patients' wishes.

4.6.23 Access to equipment both in and out of hours is a significant issue. This is dealt with in more detail in the following commentary (Access to Services).

4.6.24 Hospices report that patients and carers can generally access other community healthcare services `in hours' but found it more difficult OOH. The overall view of these service providers is that the district nurse has a key role to play in coordinating day to day care for patients in the community, and it is also recognised that community matrons could have a similar role. Sufficient support in the community means that crises can be managed without resort to admission to hospital. This includes specialist backup to advise on complex cases supporting generalist staff in helping to keep patients at home. District nursing staff noted that the care provided to patients has become more complex, creating added pressures on their caseloads.

4.6.25 The absence of 24 hour, 7 days a week community nursing care can mean that patients or carers are unable to cope, resulting in admissions that could be avoided.

4.6.26 In the case of Countess Mountbatten, consideration is being given to setting up a community and hospital nurse specialist post to run during office hours 7 days a week but this will be dependent on resources. The hospice is also able to access night sitters to support patients at home. Generally domiciliary visits can be provided and telephone advice is available to provide specialist advice. Some hospices have teams to provide specialist palliative care in community settings and report increasing demand adding significantly to caseloads. In some instances finding the right person in Adult Services can be difficult.

4.6.27 CABx highlighted that people in the community are faced with a myriad of agencies, professionals who do not communicate well, and who sometimes give confusing information. They also note long waits for occupational therapy visits.

4.6.28 Domiciliary care reported that it is able to contact services OOH but availability is a different matter. Access to in hours support could also be difficult in some areas with a 6 month wait for occupational therapy.

4.6.29 The Midhurst Macmillan Unit formerly based at King Edward VII Hospital is currently developing a `hospice without beds' model to provide support to people in their own homes, community hospitals and care homes on a 24 hours a day, 7 days a week basis. This includes counselling and social work as well as an educational package.

4.6.30 The Rosemary Foundation, based in Southeast Hampshire provides a `hands on' hospice at home service that is able to respond to any gaps in community services.

4.6.31 Most hospices have input from social workers who are seen as valued members of the multidisciplinary teams.

In Conclusion

4.6.32 The pattern of 24 hours a day, 7 days a week district nursing cover across the County is inconsistent and various patterns of work exist across Hampshire.

4.6.33 Care outside normal working hours, especially at week ends and bank holidays, is a particular issue that needs to be addressed to ensure that services are equitable and accessible.

4.6.34 Although there is general agreement that district and community services are vital if people are to be able maximise opportunities to stay at home or in the community these services have been put under intense pressure by the financial position of the NHS.

4.6.35 District nurses are generally seen as the key coordinators of day to day care, and the appointment of community matrons may also be a way for ensuring that care across the community is co-ordinated and accessible.

4.6.36 Whilst there are pockets of evidence that suggest some cross agency working is in place, this is far from being the norm. This applied to all sectors and a number of commentators made the case for this to be improved. There is no consistent strategy for enabling communication between `in-hours' and OOH services although the initiative being piloted in Southwest Hampshire between the ambulance service and community teams shows significant promise in this respect.

4.6.37 The extent to which patients' needs are regularly assessed or anticipated is not clear. In particular there appear to be issues relating to the way in which community and OOH services support people in care homes, particularly nursing homes that need to be addressed.

4.6.38 Various mechanisms exist for allowing access to medication but not all are equally effective. Obtaining drugs OOH can be problematic, particularly for nursing homes.

4.6.39 Access to equipment is a recurring issue in feedback from respondents and is addressed in the next commentary.

4.6.40 Access to specialist advice and support is available from specialist palliative care teams, Macmillan Cancer Support and most hospices. The latter are generally available 24 hours a day, 7 days a week if only in the form of telephone advice.

4.6.41 Whilst all areas report progress with the introduction of the GSF and LCP, it is not clear how far this has become embedded into routine practice. These programmes are funded as part of a three year national initiative but it is not known who is taking the lead for implementation following the restructuring of the NHS and if the funding is to be `top sliced' as a result of the funding position.

4.6.42 There are varying reports about the extent to which patients preferences concerning place of care are sought and communicated, the exceptions being hospice services and specialist palliative care teams. This can lead to inappropriate hospital admissions.

4.7 Access to Care

What the Research Evidence says

4.7.1 Patients in an advanced stage of their illness may require a range of services to meet their needs and allow them to live and die in the place of their choice if at all possible. As clinical circumstances can change rapidly these services must not only be well co-ordinated but available on a 24 hour, 7 day a week basis to prevent unnecessary suffering and emergency admission to hospital. As much of the professional support given to patients with advanced disease is delivered by staff who are not specialists in palliative care it is important that there is speedy access to specialist advice and support whenever this is required.

4.7.2 Aspects of this element of service that members of the Panel sought to understand included:

Findings of the Panel

4.7.3 The single most common problem identified by stakeholders is access to equipment in and out of hours. The exception to this is generally hospices and hospitals, which carry their own supplies although these were inevitably limited and could not always meet demand.

4.7.4 A Best Value Review of these services, undertaken by the County Council in 2000 came to the following conclusions:

4.7.5 Current arrangements for accessing and supporting these services suggest that a number of problems around resourcing continue, exacerbated by increasing demand. Adult Services and the NHS have acknowledged that, despite the current financial difficulties of both organisations, this is an issue that needs to be addressed.

4.7.6 Members visited the stores in both Basingstoke and Southeast Hampshire. Although each had issues that needed to be addressed it is noted that the store in the Southeast did not have the same problems with equipment shortage or access.

4.7.7 After visiting the Basingstoke store Members expressed concern at the conditions in which staff are working. It is hoped that this will be addressed when the JES moves next August. In order to keep experienced and dedicated staff it is anticipated that the store will remain in the Basingstoke area. Members particularly commented on the skill of the manager of the service in securing excellent value for money in procurement, and the efforts of staff to respond innovatively to the demands placed on the service.

4.7.8 During their visit the following was noted:

4.7.9 A number of options for addressing current problems with access to equipment are currently being considered, including resolving the funding discrepancies between health and social care. Initial discussions around this being managed on a 50:50 basis have stalled on the question of whether this arrangement should extend to the technician service. The Panel notes that in the short and long term there are serious concerns around performance, staff morale and patient/client experience.

4.7.10 Inaccessibility of patients' notes can make it difficult to respond to needs OOH. Hospices report problems with accessing equipment in and out of hours for patients at, or retuning home. Some carried their own equipment to help manage this situation. Accessing equipment over weekends and bank holidays could be a particular issue in the Southeast. OOH arrangements in the Southeast differ from those in the Southwest in some respects. It is not clear from a commissioning perspective how these differences are being tackled.

4.7.11 Commissioners reported that emergency admission avoidance strategies are in place but the extent to which these are effective is not clear as all hospitals report patients being admitted either inappropriately or in the last days of life. Other service providers report a mixed picture of the availability of services. Generally respondents accepted that the transfer of patients in and out of hospitals can be difficult and that access to medication is also variable.

4.7.12 One area (Southeast) reported that there is a single point of access for all community services operating on a 5 day (not OOH) basis. OOH and community nursing support varied considerably from area to area. Communications between services about a patient's needs is also an issue and one area (North Hampshire) noted that it is sometimes difficult to manage patients and carer expectations around response times OOH due to a lack of formal arrangements.

4.7.13 Night sitting and Marie Curie nurses are in place in some areas but not others, and there is a varying range of support from Hospices and the voluntary sector.

4.7.14 Hospices report concerns from patients that OOH services may not be available to support them at home, or be aware of their circumstances. Feedback from care homes suggests that OOH is generally satisfactory. Domiciliary providers comment that services are contactable but their availability is another matter. There is, for example, a six month wait for occupational therapy assessment in some areas. Lack of community support can lead to a 999 call.

4.7.15 Adult Services reported that nursing homes can have difficulty in accessing district nursing services. Nursing and residential homes may have access to their own equipment.

In Conclusion

4.7.16 Specialist palliative care support and advice is available 24 hours a day, 7 days a week, primarily through hospice services and specialist palliative care teams. The Panel received variable reports about the ease with which these services can be accessed so it is not possible to determine if this information is systematically communicated to all primary care, community, emergency and OOH staff.

4.7.17 Access to specialist equipment to help people to stay at home or in the community is not acceptable and this point needs to be addressed as a matter of urgency. This is a long standing problem that cannot be allowed to continue. An agreed integrated approach would be desirable to allow for equity in access round the clock. It is essential that the County Council and the NHS agree a way forward that recognises these points and takes account of the fact that inadequate access to equipment can lead to other cost pressures in the system, such as inappropriate admission to hospital and delayed discharge. There needs to be a mature discussion about the support provided by the technicians, and the current anomalies with regard to information technology systems also need to be jointly addressed.

4.7.18 Access to controlled drugs out of hours is too variable and needs to be addressed.

4.7.19 Mechanisms for communicating the palliative care needs of patients across teams in different locations have been most effectively developed by hospice services and palliative teams. There is conflicting evidence of how well this is working across the statutory agencies, particularly outside normal working hours. Consideration needs to be given to the best way of resolving this issue.

4.8 Specialist Palliative Care Teams

What the Research Evidence says

4.8.1 Specialised services may be necessary to address the range of complex problems suffered by a significant number of people with advanced disease. Most areas in the country have access to hospice or specialist palliative care services although this can vary widely. Good practice suggests that advice and support from multidisciplinary specialist teams, whether hospital or community based, should be available on a 24 hours a day, 7 days a week basis. The minimum is access to telephone advice.

4.8.2 The specialist team should comprise palliative care consultants and palliative care nurse specialists, together with a range of other professional input from physiotherapists, occupational therapists, dieticians, pharmacists social workers and those able to give spiritual and psychological support. The services they provide will include:

4.8.3 Because of their nature these services need to be accessible on a 24 hours a day, 7 days a week basis, not only to those providing day to day care but also to those providing OOH services. In those circumstances where a full range of expertise is not available within a team, formal arrangements should be established with neighbouring services to ensure access.

4.8.4 Those providing day-to day care, specialist care, and Out of Hours care should also be able to speedily access specialist equipment as and when this is required, whatever setting the patient is in.

4.8.5 This raises a series of questions about the way in which the needs for these services are assessed and commissioned. Members therefore sought information on the following:

Findings of the Panel

4.8.6 The Cancer Network reported that specialist advice and support is available throughout the network Monday to Friday 9am to 5pm via local hospices. 24 hours a day, 7 days a week telephone advice is also available to support health professionals caring for patients, including access to services and medicines.

4.8.7 In Southwest Hampshire commissioning of specialist palliative care provides for a full range of services across different care settings including inpatients beds, day care/hospital, home care nurses, rehabilitation, bereavement and specialist advice. The services work in a multi-disciplinary manner. It is not clear if these services are available 24 hours a day, 7 days a week.

4.8.8 Southeast Hampshire provides for access to specialist advice and support 24 hours a day, 7 days a week. This covers patients with all diagnoses.

4.8.9 North Hampshire described commissioning processes across specialist care with a multi-disciplinary team in place that includes social care, therapists, consultants and hospice staff. This was not provided 24 hours a day, 7 days a week, although St Michaels Hospice is able to provide this on an informal basis and has a 24 hour telephone service.

4.8.10 Adult Services note that there is access to specialist advice and support but did not elaborate on the form that this takes. They did comment that access to advice is variable across PCTs.

4.8.11 Winchester and Eastleigh Healthcare NHS Trust has specialist palliative care services within the Trust. This has close links with the Countess Mountbatten Hospice and there is a GP led unit at Andover (Countess of Brecknock Hospice) with inpatient palliative care for up to 6 patients. At the time of visiting the Countess of Brecknock Hospice there was no community nursing service because of staff vacancies and only a limited physiotherapy service.

4.8.12 Portsmouth Hospitals NHS Trust has 8 palliative care beds for people who are over 65 run by the Department of Medicine for Older People but no other dedicated facilities. Specialist Palliative care services are provided through a team based at the Rowans Hospice, comprising of one consultant in palliative medicine and three full time clinical nurse specialists is available Monday to Friday 9-5 with the Rowans Hospice providing telephone advice out of hours. The Team can admit to the hospice but not after 3pm. There is 24 hours a day, 7 days a week access to medication and this works well. A recent change to the procurement of some equipment (syringe drivers) by the Trust has caused some difficulty in transferring patients to community services.

4.8.13 The Rowans Hospice provides specialist inpatient palliative care for 19 inpatients, day care, support to families and out reach to the community and hospital. Urgent referrals are dealt with in 4 hours. 95% of patients have a diagnosis of cancer although there is no barrier to other patients accessing the services provided. Through the NHS specialist palliative care team the hospice is able to visit or admit patients from care homes.

4.8.14 The Rosemary Foundation operates a `hospice at home' service in the Petersfield/East/West Meon area. They provide a 24 hours a day, 7 days a week nursing service although OOH provision can be challenging. Counselling and bereavement support as well as some complimentary therapies are also available.

4.8.15 The Midhurst Macmillan Specialist Palliative Care Team is also working in the south east of Hampshire. Formerly based at King Edward IV Hospital this service was seeking to provide patients with a totally integrated intensive home care service.

4.8.16 Oakhaven Hospice in Lymington provides specialist palliative inpatient care for up to 8 patients, support to community based services, physiotherapy, some day services, counselling, chaplaincy and training. 95% of patients have a diagnosis of cancer. Support is provided to patients from care homes. There are particular pressures on specialist community nursing services partly through clinical demands.

4.8.17 The Phyllis Tuckwell Hospice based in Farnham is able to provide services to people in north east Hampshire. It currently has 16 inpatient beds (with capacity for 20), day hospice facilities, outpatients, community nurse teams, a range of therapies and support to families. All staff are trained in specialist palliative care. 24 hours a day, 7 days a week advice is available to other health professionals.

4.8.18 The North Hampshire palliative care services consists of a multidisciplinary team working across the community, hospital and St.Michael's Hospice. The hospice has 10 beds open (of 15 registered) with discretion to open a further 2. St Michaels provides holistic care for patients and their families, working closely with acute and community-based NHS services. In addition to inpatient beds the hospice provides a range of community nursing and therapy services as well as training packages. They have recently appointed two staff to co-ordinate packages of care. Most patients have cancer but patients with other diagnoses can be referred to the service. 40% of patients admitted are discharged home.

4.8.19 Southampton University Hospitals Trust provides a specialist palliative care service based at the Countess Mountbatten Hospice and a Hospital Palliative care Team based at Southampton General Hospital which is able to provide specialist support to any patient.

4.8.20 The inpatient unit at the Countess Mountbatten Hospice comprises 25 beds (3 currently closed due to staffing shortages), a community palliative care service, a day care service and bereavement service. Specialist advice, support, equipment and medication is accessible in and out of hours. Consideration is currently being given to extending the Community and Hospital Clinical Nurse Specialist Team although this is dependent on the funding available. It has recently been agreed that the specialist palliative care team based at the general hospital can refer patients with a diagnosis other than cancer to the hospice.

4.8.21 All hospice services reported a high number of volunteers able to provide support as required.

4.8.22 Marie Curie Cancer Care has nine contracts for nursing services in Hampshire. The costs of these services are shared between the NHS and Marie Curie with the NHS paying approximately 50% of the costs where care is provided to cancer patients. For other patients the NHS is charged 100% of the costs. Two PCTs used the contracts to care for non cancer patients at home. In 2005/06 every PCT was under spent against this budget. The reasons for this included low levels of referral, uncoordinated nurse availability and a lack of nurses. Marie Curie nurses could be booked up two weeks in advance.

4.8.23 In North Hampshire the equivalent of the Marie Curie nursing service is provided by the St.Michael's community service.

4.8.24 The South Central Ambulance NHS Trust identified that better access to palliative care drugs and extended specialist nurse cover would improve available services.

In Conclusion

4.8.25 The way in which needs for specialist palliative care services are assessed across commissioners in Hampshire is not clear. The principal document referred to by respondents was prepared by the Cancer Network and provides helpful information but not a complete picture. There is no indication of needs being assessed for patients with diagnoses other than cancer.

4.8.26 The specialist palliative in-patient and community provision that exists varies widely across the area, primarily based around hospices and there are strong partnership arrangements in place with acute hospitals. Support is provided in the community and again this varies considerably.

4.8.27 24 hours a day, 7 days a week support and advice exists, often through arrangements with hospices. It is not clear of the extent to which this is accessed by OOH services.

4.8.28 Referral to hospices and other support is available to people regardless of diagnosis, but many perceive that access to hospices in particular is only an option for patients with cancer.

4.8.29 There is evidence of emerging innovative practice across hospice services with regard to the provision of specialist palliative care in people's own homes. All hospices reported mounting pressures on specialist palliative community nursing services.

4.8.30 NHS contributions to the hospice service vary significantly from 35% of service budgets down to just 3%. The way in which funding is determined (or effectiveness evaluated) is not clear. Increasing pressures on hospice services means that most are struggling to meet demand.

4.8.31 There is no evidence that commissioning takes account of, or is sufficient to meet, the needs of patients with conditions other than cancer that could benefit from specialist palliative care advice and support. Most areas reported that there is a significant dependence on hospices and the charitable sector to provide these services with limited contributions from the NHS.

4.9 Symptom Management

What the Research Evidence says

4.9.1 WHO reports that pain is an issue for many older people, partly because they tend to under report symptoms and clinicians in turn tend to under treat pain. As people age there is evidence to suggest that older people (i.e. 85 +) are less likely to receive pain controlling drugs such as opiates. Older people with dementia are especially vulnerable in this respect because their communication problems make them less able to report pain and so may not be properly assessed by health professionals.

4.9.2 Across the Central South Coast Cancer Network the prevalence of problems/symptoms experienced by patients with advanced chronic disease is estimated as follows:

4.9.3 Key questions in relation to symptom control include:

Findings of the Panel

4.9.4 Overall there is more evidence available to the Panel about symptom control for people with a diagnosis of cancer as opposed to other conditions. The main tool used for anticipating needs with regard to symptom control is the LCP. The GSF is also able to support advance care planning. Each of these tools are in various stages of roll-out across the Hampshire area. The analysis of the impact of these programmes does however indicate that there are no measurable differences in the quality and adequacy of care although the report on this acknowledges that there may be methodological problems that would affect this conclusion.

4.9.5 The West Hampshire OOH service works closely with emergency and other service providers to ensure that patients receive appropriate and timely treatment at the end of their lives and that inappropriate interventions or admission to hospital are minimised. Problems with sharing records mean that ambulance and OOH staff may not always be aware of a patient's resuscitation status or care preferences.

4.9.6 `Just in case boxes' are available in some areas to help manage symptoms and keep patients at home for longer, but it is not clear if these are able to include controlled drugs. Nursing homes are not able to keep drugs on the premises without a special licence.

4.9.7 Specialist palliative care teams and hospices play a key role in supporting those providing day to day care to manage symptoms in community/home settings. Countess Mountbatten provides a named palliative care clinical nurse specialist that works closely with community teams; medical staff are able to provide domiciliary visits as well as telephone advice. Where resources are stretched this can cause pressures on the services provided by the hospices. Inpatient care includes complex symptom control. The support of these services in helping patients remain in the place of their choice is key as patients, particularly those with non cancer conditions, can experience peaks and troughs in symptoms that can make planning care difficult.

4.9.8 Hospice at Home services, such as the Rosemary Foundation (highly valued by local district nursing staff) and Midhurst Specialist Palliative Care Service are able to provide a fast and complimentary service to that provided by the NHS however there are problems with the funding of this care.

4.9.9 Although all hospitals should have a resuscitation policy it is not clear how this is managed across all areas where patients can be admitted. Hospices generally reported agreement on resuscitation status with patients and relatives. North Hampshire has developed an information folder for patients and their families. Cancer pain guidelines have been developed for staff.

4.9.10 The absence of a single set of records in patient's homes can cause problems, particularly if the patient's resuscitation status is not clearly recorded. There is scope for improving communication between all care providers and the emergency and OOH services.

4.9.11 Adult Services notes the role of the district nurse and palliative care nurse specialist in managing symptoms.

4.9.12 The Southwest area reported that pain control out of hours is a particular issue that needed attention.

4.9.13 Comments from domiciliary services highlight that care in peoples' homes can be `chaotic', particularly if advanced care plans are not in place and staff do not visit regularly.

4.9.14 CABx reported on other factors associated with the patients well being that may impact on their ability to stay at home. This included the co-ordination of services such as incontinence management, meals on wheels and similar services.

4.9.15 Eastleigh Southern Parishes Older Persons Forum commented on the need for there to be easier access to information about `living wills' and other forms of advance directives, including the cessation of active treatment.

In Conclusion

4.9.16 Generally there was a better understanding of the need for controlling symptoms of patients with cancer than those with other conditions.

4.9.17 Assessment tools are available to help patients, informal and formal carers manage symptoms, including pain relief. These tend to be concentrated with the specialist services with programmes such as the GSF and LCP in the early stages of implementation across the County. This means that access to these services is variable.

4.9.18 If a patient's symptoms are not properly anticipated and controlled this can lead to crises that result in admission to hospital. If carers are to be confident in supporting patients at home then service providers need to ensure that help is provided not only with regard to pain relief but also loss of mobility, increased confusion and incontinence.

4.9.19 Evidence that patients and carers have the skills to address anticipated symptom control needs tended to come from the hospices and their teams, as did feedback about the use of advanced care planning to enable patients carers and professional staff to have access to medication and equipment to meet anticipated needs as and when this is required. This is not clear from other evidence provided to the Panel.

4.9.20 A range of initiative is in place to support 24 hours a day, 7 days a week access to pharmacy support and appropriate medication but can be variable, and the extent to which care homes are able to access these services is not clear.

4.9.21 Communication across different service providers is also problematic. Beyond the initiative in Southwest Hampshire the Panel could not be confident that effective handover arrangements to OOH services and other service providers are in place. A number of commentators identified this as an issue to be addressed.

4.10 Choice in Place of Dying

What the Research Evidence says

4.10.1 The research indicates that many people would prefer to die at home if this is possible (between 50% & 75 %) although only 20% to 25% are able to do so. A majority of people (circa 56%) die in hospital although only 11% express this as a preference. Comparison with national research indicates that Hampshire is broadly reflective of the national picture in terms of deaths in hospital and nursing homes although there are local variations across different PCT areas. If a patient does die at home there is a need for a significant increase in co-ordination across the teams providing care if admission to hospital is to be avoided. Unless there are symptoms that can only be controlled through the provision of specialist care there is no reason why a majority of patients should not be cared for in the setting of their choice.

4.10.2 A key issue is how people are able to make genuine choices about their care and have that communicated effectively across the teams likely to be involved in providing care.

4.10.3 Some research suggests that there could be a correlation between the availability of hospital beds and where people die, irrespective of patient preferences or the availability of community services. There are also questions about the extent to which older people are represented in settings such as in-patient hospices (bearing in mind that some will only accept patients suffering from cancer). If people are in a care home they are more likely to have multiple health problems and some degree of cognitive impairment. This can complicate the detection of symptoms that need managing, including pain control. There is some evidence that palliative care teams directly linked with nursing homes can be helpful in this respect.

4.10.4 Key issues for the Panel to explore in the context of symptom management will include:

Findings of the Panel

4.10.5 The SHA reported that it intends to carry out a comparative audit of residents admitted from nursing homes to hospital for care at the end of life. This work is currently in hand as is the development of a `preferred place of care tool'.

4.10.6 Although public health data is available about the place of death there is no supporting information to indicate if this is the place of choice for the patient.

4.10.7 Respondents referred to local arrangements whereby access to NHS continuing care was provided in the last 8 weeks of life although the precise arrangements varied across the County. The Panel is unable to confirm if PCTs had formally agreed this time scale with Adult Services. A number of issues were identified with regard to predicting specifically how long a patient may have to live, rather than the actual health and social care needs of the patient and their carers. The problems caused by the different funding streams to health and social care are particularly striking in this context.

4.10.8 Generally, respondents agreed that identifying patients who have less than eight week to live can be difficult, more so for patients with diagnoses other than cancer. Some patients may deteriorate rapidly whilst others will unexpectedly rally. This can lead to reluctance in some staff to make a prognosis although a further complicating factor is the funding arrangements for NHS continuing care. People who are assessed as having less than 8 weeks to live are eligible for NHS continuing care which is free at the point of delivery. If an estimate of how long a person has to live is wrong, there are funding implications for both health and Adult Services. This can lead to tension as both services are under extreme financial pressure.

4.10.9 Adult Services commented that systems for identifying patients reaching the terminal stage of their illness are inconsistent across the County; some areas are very good, others are almost non-existent. By the time all parties have reached a decision the patient may have moved to the next phase of their illness. Some professionals can appear to be afraid of making decisions. From a care home perspective it was highlighted that, due to funding arrangements around continuing care, the prognosis that a patient is reaching the last eight weeks of life is `fraught with political difficulties'. Domiciliary care reported that in these circumstances, home situations could become `confusing and chaotic'. The intervention of social workers at this point can add to the stress of the staff concerned and the carers.

4.10.10 This variation in approach is reflected in comments from the NHS which range from noting that there is limited support from Adult Services when patients reached the terminal stage of their life, to the `excellent working relationship that exists between a Rapid Response team and Hampshire County Council social worker'.

4.10.11 GP practices use different methods to identify patients who are reaching the terminal stage of their life. This is normally when the full attendance allowance form is issued and no further active treatment is being given. Care planning, clinical judgement and regular review are the principal ways of reaching a view on this stage of disease progression. One commentary stated that everyone who is terminal is registered, and this is reviewed quarterly.

4.10.12 The main way in which patients' wishes and preferences are sought and communicated is through the GSF and LCP, although the latter only applies to the last few days of life. In hospitals the LCP may only be piloted on one ward so the extent to which this is a routine way of recording patient's preferences is not clear. Other ways of recording this information are through the multidisciplinary or specialist palliative teams.

4.10.13 Hospitals report that people are sometimes admitted as emergencies in the last 24 hours or week of life. Generally the view is that the implementation of the Gold Standard Framework would reduce the number of patients admitted in this way. Southeast Hampshire reported that patients could be admitted without direct observation or examination, and most frequently this occurs out of hours.

4.10.14 SUHT Intensive Care Team is planning to pilot an initiative that will allow some critically ill patients who will not survive to be able to return home with appropriate clinical support. It is hoped this work will take place later this year.

4.10.15 Family members can exert pressure for patients to be admitted inappropriately, particularly if there was a breakdown in care at home or because of carer fatigue. Lack of awareness and training of agency nursing staff could also be a contributory factor.

4.10.16 Some nursing homes could feel reluctant or inadequately trained to care for dying patients, this could lead to a patient being admitted to hospital. This is not to say that all such admissions are inappropriate, as changes in a patient's condition can make symptoms increasingly difficult to manage in a community setting.

4.10.17 Adult Services reported that patients could be admitted to hospital following disagreements between the multidisciplinary team and the wishes of relatives.

4.10.18 The Ambulance Trust reported that these admissions are not always appropriate, and it may not be clear if admission is in accord with the choice of the patient. There is an initiative underway in Southwest Hampshire that gives district nurses and other health professionals the opportunity to discuss with carers what to expect as the patient reaches the end stages of life. This helps to avoid a crisis which in turn can lead to inappropriate admission, particularly if this happens OOH. Countess Mountbatten Hospice reported that they would welcome discussion with OOH providers about the scope for sharing information with the Ambulance service.

4.10.19 Hospices gave the most detailed feedback on how they seek to ensure that patients' preferences are met, also highlighting that these may change over time. Arrangements to allow family members to stay at hospices are normally in place.

4.10.20 Marie Curie Nursing Services are able to provide the level of nursing care necessary to allow patients the choice of dying at home supported by their families. They reported that the Hampshire home death rate is slightly below the national average of at 22.6 %, suggesting that patients may not be able to die at home even if that is their choice. The cause of this is attributed to poor co-ordination of care, poor communication between organisations and lack of information about alternatives to hospital. They point to the importance of the relationship between the NHS and social services in supporting people to die at home.

4.10.21 Marie Curie Nursing is piloting work in Lincolnshire to look at how care in the community can be improved for people across all diagnoses and support provided for those choosing to die at home. Although in the early stages of development this initiative is improving choice for patients and the early economic analysis indicates that the costs of providing this care in the community is no more expensive than that provided in traditional acute care. Community costs may improve as services mature.

4.10.22 The comments from care homes suggest that there are issues still to be addressed with regard to the reasoning behind dying patients being moved from hospitals late at night, without a chance for them to prepare, or being barely clothed.

4.10.23 Professor Addington-Hall pointed out that it may be erroneous to assume that older people invariably wish to die at home as the available research did not look specifically at the wishes of older people in this respect but at a wider patient group. She suggests that for a number of reasons older people may wish to access hospices (or hospital) in order to reduce the burden and impact on carers. Thus far, evidence from the assessment of the impact of the GSF did not show an associated increase in the number of people dying at home.

4.10.24 CABx reported that lack of support often led to patients being admitted to hospital inappropriately.

4.10.25 Eastleigh Southern Parishes Older People's Forum reported that the growth of `hospice at home' initiatives are welcome but more information needed to be made available to people about hospice care as an option when people were reaching the last stage of their life. This information needs to be made available as early as possible. In the view of the Forum, more needs to be done to help older people plan for the end of their life, allowing them as much control as possible.

In Conclusion

4.10.26 Apart from the initiative in Southwest Hampshire the Panel received no evidence that there were clear protocols with ambulance services and OOH services to deal with the transfer of people who may be in the final stage of their illness and thus avoid inappropriate interventions or admission to hospital.

4.10.27 There is evidence of innovative practice and a commitment to support patients to choose where they die. The Panel will be keen to see the findings of the pilot work planned by the SUHT Intensive Care Team.

4.10.28 All hospitals report that people are admitted in the last week or 24 hours of life and that these admissions could be reduced, but none report any action to address this issue. Nor was the Panel able to determine how the admission avoidance strategies cited by commissioners contribute to managing this issue.

4.10.29 There are organisational tensions relating to the continuing care needs of patients who are moving towards this final stage of life as well as the support that should be provided to carers. Department of Health Guidance on this issue refers to a situation `where the patient is likely to die in the near future', not a time scale. Anecdotal feedback from outside the County also suggests that many PCTs use a 12 week period for assessing whether a patient is eligible for NHS continuing care. Given the current financial pressures on both the NHS and Adult Services this is an issue that needs to be urgently addressed. Pressures on continuing care highlighted in PCT financial reports suggest that even using the 8 week criteria, significant and unplanned expenditure is occurring.

4.10.30 Although Adult Services is of the view that the PCT has responsibility for providing and arranging services to meet patients' needs, in some circumstances this can lead to the personal care needs of people not being met. Action needs to be taken to clarify how the needs for personal/social support to patients receiving NHS continuing care will be provided. Regardless of who takes the lead, this is an issue that needs to be addressed by the NHS and Adult Services.

4.10.31 Access to specialist palliative care advice and support (24 hours a day, 7 days a week) for carers, day to day service providers and OOH services is reported as being available although directed through a number of different routes. Some respondents were unaware of the services that were available. The implication of this for carers, care homes and OOH in particular is a source of concern, as is the potential for this to impact on inappropriate hospital admission. In particular the Panel notes that although most hospices were able to accept patients with a diagnosis other than cancer, this information did not seem to be generally communicated to inform choice in place of care.

4.10.32 There are a number of initiatives that have sought to ensure that there is access to appropriate pharmacy advice, support and medication, however this is not universally available. In particular there would seem to be issues around support available to care homes.

4.10.33 Hospice services have developed the most robust mechanisms for recording and updating patient preferences in terms of place of dying and where appropriate, the resuscitation status of the patient. This is accessible to all involved in providing care to the patient. There is however no evidence that these arrangements are systematically applied in other care settings.

4.10.34 Feedback from respondents suggests that older people may not be accessing hospices, or be aware that this is an option open to them. This point is as important for carers as patients, particularly where it is necessary to manage rapidly changing circumstances and avoid unnecessary hospital admissions.

4.11 Information and Communication

What the Research Evidence says

4.11.1 Patients should receive information on who they can contact at any time (on a 24 hours a day, 7 days a week basis) for advice, support or services. This may take the form of a single telephone access point. Written information that is culturally sensitive should be available in a variety of formats for patients and carers and should include details of who to contact locally. Additionally service directories can be helpful in explaining the range of care available including specialist, psychological and spiritual support and access to complementary therapies:

Findings of the Panel

4.11.2 Overall there is more evidence of communication with, and information for, patients and carers who were dealing with cancer. The main tool used to promote communication and support for patients and their families is the GSF.

4.11.3 The lack of agreement about single assessment or shared information across those providing care can cause difficulties in communicating patient's needs particularly between different sectors and OOH services. There can be difficulties in setting up systems to share information and obtaining patient consent.

4.11.4 The extent to which commissioning is informed by the views of patients and carers is not clear - most areas cite the existence of various groups ranging from the Cancer Network to PALs as the principal sources of this information. None provided any evidence of how these activities inform service delivery. The Central South Coast Cancer Network includes a user representative.

4.11.5 Service providers depend most heavily on the one-to-one relationships that develop with key staff such as district nurses. Other existing systems, such as complaints and compliments were also identified as the routes through which patients and their carers inform service planning and delivery.

4.11.6 Information to patients and their carers comes from a number of national and local sources including Macmillan Information and Support Centres. Some specialist palliative care teams produce their own information. North Hampshire has introduced information folders for patients that include local contacts and a questionnaire. Focus groups are due to start from December 2006.

4.11.7 Adult Services take account of the views of patients when completing care plans. Staff try to provide any information required drawing on available resources.

4.11.8 Hospice services generally placed a significant emphasis on one to one communication and information to meet patients' needs. Some have their own websites and are also able to provide information about welfare benefits and other supportive services outside health and social care. Countess Mountbatten Hospice had undertaken an inpatient survey to obtain patients' views, and the scope for user involvement in shaping services is being actively explored. Feedback from patients is used at monthly meetings to improve service delivery. Similarly St Michael's Hospice has undertaken both satisfaction surveys and patient questionnaires whilst Oakhavan Hospice has conducted a detailed service evaluation involving patients and all health professionals.

4.11.9 Feedback from care homes points to the lack of capacity of many patients to be actively involved in informing services and indicated the need to regularly consult with carers and advocates. This tends to be an on-going process. They also made the point that there are a multitude of different sources of information and a `one stop shop' would be helpful. Domiciliary care is only provided after lengthy discussions with patients and carers, however there is not an advanced care package for end of life care.

4.11.10 CABx also made the point about the difficulties patients can have getting the information they need and the fact this frequently goes beyond health and social care needs. Some professionals are either too busy to share information or are not familiar with local services. CABx and other third sector organisations have a key role in such circumstances, helping people to access the services they needed. Debt and poverty can be a significant issue for older people, despite the perception that Hampshire is relatively affluent. The value of the third sector in supporting this wider aspect of care provision is not generally recognised by the statutory agencies and in at least one instance a third sector service is under threat as a result of recent cuts to grants.

4.11.11 Eastleigh Southern Parishes Older Persons Forum supports the need for there to be a more holistic approach to people who are reaching the end of their life, and the need for all service providers to better understand how this is experienced. Professor Addington-Hall echoed these points, noting the number of people dying at home who incur significant debt.

In Conclusion

4.11.12 Overall there is a wide range of information available about different conditions and specialist services. In some cases it can be difficult for patients and carers to navigate through this to get access to the services they need. A trusted source of local knowledge to help people find what they need would be helpful.

4.11.13 There is a need to ensure that the emphasis on health and social care also recognises that care at end of life may need to take account of widely varying personal circumstances which can have a direct impact on patients and their families. The means of accessing more general help to deal with issues such as financial problems or accessing benefits are not always clear.

4.11.14 Hospice services are best placed to show how the views of patients and carers are taken into account, including peer support and self help activities. Arrangements for securing this feedback by Adult Services and the NHS range from being unclear to inadequate.

4.11.15 There is some evidence of patients holding their own records but this is limited when looked at across the County area.

4.12 Support to Carers

What the Research Evidence says

4.12.1 Families and carers provide essential support for patients but the research suggests that their needs may go unrecognised. Needs can be most intense at the time of bereavement, and professional support may not always be available. Nationally it is estimated that there are over 500,000 carers of the terminally ill, and many of us will take on this role at some point in our lives. Recent legislation has recognised the rights of carers, including the right to assessment of their needs. There can however be difficulties in accessing these assessments and the support available can vary widely.

4.12.2 Although carers' needs can be very wide ranging, including home help, nursing assistance and financial advice, it is more difficult to access appropriate psychological support. Information about the needs of the patients is also an important part of service provision. Professionals providing support to carers must be able to recognise their needs whilst taking account of the tendency for carers to put the needs of the patient above their own. They will only be likely to accept services designed to support them if they are confident that in doing so they are not diverting attention away from the patients they care for.

4.12.3 Access to respite care is important as are associated services such as home care and `sitting services'. `Our health our care our say' includes specific commitments for carers, including a drive to extend support to them, the establishment of a information service/helpline, a guarantee of short term, home based respite for times of crisis or emergency situations, and training opportunities to encourage them to take greater control over their own health and the health of those in their care. Taking the above into account, members of the Panel sought information on the following:

Findings of the Panel

4.12.4 Hospitals identified that carers are able to access support and information through the Cancer Network and information leaflets. Carers needs are assessed, planned for and implemented as part of the care planning process. This is generally done on a face to face basis but telephone consultations are possible although these tend to restrict rapport.

4.12.5 Support to carers is available from palliative care teams, community nursing services, ward staff and others involved in care. The LCP was identified as the route through which relatives' needs are met. Often GPs are the key link for informal carers and provide some continuity of support to people pre and post bereavement. Sometimes it can be difficult to gauge the level of support that people want, and sensitivity is needed to ensure this is tailored around individuals' needs.

4.12.6 Adult Services reported that informal carers' needs are assessed by care managers. Other support for families is provided informally by staff and through sign posting to chronic disease and bereavement support groups. Additionally, domiciliary care providers can refer clients for respite care via care managers and all homes have respite/short term care beds.

4.12.7 Generally, the hospices provided the greatest detail about the support available to informal carers. Relatives are normally seen the day after a patient has died and a range of information shared. Some hospices have access to a dedicated bereavement service which is seen as an integral part of care provision. Usually, provision can be made for informal carers to stay overnight with patients, and some single rooms have double beds. In some instances counselling is available and referrals can be made for regular respite. Some help is provided to help with accessing benefits and grants.

4.12.8 Some support at night is available, primarily through Marie Curie nursing services although the extent to which this was available to patients with diagnoses other than cancer is unclear. Last year the contracts for these services were underused but the reasons for this are unclear.

4.12.9 CABx highlighted the difficult tasks that informal carers can face in co-ordinating services that have a variety of access routes. They also highlighted the importance of local knowledge in understanding how to make the best use of those services that are available. Rural bureaux have identified particular issues relating to the loss of community hospital and respite facilities which can increase reliance on domiciliary care as a source of support. There are also benefits for patients if they know that their families are being supported with some of the wider issues such as wills, housing, and financial security. CABx reported that Adult Services occasionally refused requests for carers' assessments.

4.12.10 Care homes are able to provide TLC and general advice but informal carers need to access GPs or social workers for more support and assessment. Domiciliary services in the Portsmouth area reported that they are able to access a `sitting service' when an informal carer is `at the end of their tether' but were not clear how widely this was available and who actually used the service. It was also noted that informal carers often do express a desire for someone to talk to, but such help may be difficult to find.

4.12.11 The Eastleigh Southern Parishes Older People's Forum highlighted the need for informal carers to be able to access a professional who is fully conversant with the patient's condition who is able to answer questions.

In Conclusion

4.12.12 The Panel is not able to get a full picture of the support available to informal carers from the evidence provided by stakeholders. Hospices provided the most information and sense of a `holistic' service able to adapt and respond to different needs. Other sources of advice, such as that provided by the CABx are also a key element in the care provided.

4.12.13 Contracts are in place for Marie Curie and other third sector providers of care but beyond this it is not possible to gauge the extent to which respite and other support was routinely provided.

4.12.14 The leads in health seem to be GPs or district nurses, who provide a degree of continuity for informal carers who are registered with them as patients. In Adult Services, care managers are identified as the lead although there is conflicting information about the extent to which they are able to respond to requests for carers' assessments.

4.12.15 The availability of timely and appropriate support, information and advice is also unclear, and the Panel received no indication of the extent to which the views of informal carers inform the planning and delivery of respite services by the statutory sector.

4.12.16 The QOF payment to GPs now supports practices in maintaining records of informal carers.

4.13 Workforce and Training

What the Research Evidence says

4.13.1 Delivery of care to people who are in advanced or terminal stages of disease will be critically dependant on the skills of the workforce operating across agencies. Generalist and specialist professional staff will have a range of training and development needs that should be met through appropriate education and training programmes. Providers of care should be able to demonstrate the competence of staff through the programmes in place to meet defined needs. This should include training in needs assessment for both patients and informal carers. Professional staff have a responsibility to ensure that they have received such training before undertaking assessments.

4.13.2 The Department of Health has funded a three year programme to provide education and support programmes for district and community nurses in the principles and practice of palliative care. It is estimated that approximately one third of members of district nursing teams were in contact in with the programme over the three year period. The initial target group (`G' grade nurses) was revised to enable a wider range of health and social care professionals to participate. Particular challenges being experienced, include the difficulties that some staff have in accessing the programme due to heavy workloads, unfilled team vacancies, and issues relating to the lack of information about the numbers, grades and educational needs of district nurses. Part-time staff experience particular problems. An evaluation of the effectiveness of this initiative indicated that there was:

4.13.3 Training for staff should be clearly defined to cover health, Adult Services, the voluntary sector and care homes. It is important to understand which training needs are identified and targeted across different grades of professional staff that provide end of life care. Equally, particularly with regard to care homes, there is evidence that unqualified staff, who often enjoy a close relationship with residents, can have a major contribution to make to end of life care. Additional problems exist for care homes that experience high turnover rates. Questions of interest to the Panel therefore include:

Findings of the Panel

4.13.4 The key drivers for training were through the GSF and the LCP. These are funded through the National End of Life Programme. Although these tools have been principally developed for people with cancer they are strongly supported as a suitable mechanisms for training staff to deal with end of life issues, regardless of diagnosis. The preferred place of care plan was due for completion later this year.

4.13.5 The former SHA facilitated this programme but did not have the authority to require PCTs and service providers to implement it. It is not clear how this role will be taken forward in the new SHA area. The `Treasure Trove' training programme provides basic palliative care education for community nursing and care home staff. It is not clear if this programme is limited to people with cancer. This is important as some areas identify only this programme as a source of training (e.g. Southeast Hampshire). North Hampshire has set aside specialist palliative care funds to support training across all organisations and settings, including intermediate care, community hospitals, district nursing, learning disability and mental health.

4.13.6 As part of the care homes education project an Open University Course in palliative care has been available from October 2006. Work is also in hand with care homes to identify the needs of care assistants employed by Hampshire County Council and the independent sector. Adult Services commented that there are particular issues with regard to the taboos that exist around death, and the need for this to be better understood as part of life. North Hampshire reported that the MacMillan Foundation Course is to be cascaded out to nursing homes.

4.13.7 Sign up to the GSF and LCP was variable across Hampshire. Thought needs to be given to how these tools can become more embedded in practice as the funding to support facilitators is to finish this year. Whilst there is clear national evidence that these programmes can increase the confidence of some staff, the impact that they have on actual care delivery has yet to be demonstrated. Primary care sign-up to the GSF in particular was supported through QOF payments but the GSF is not explicitly linked with the GMS contract so is not a requirement of general practice.

4.13.8 Staff capacity can lead to some difficulties in freeing up time, and the uptake of courses can be limited by competing work pressures. This is a particular issue for staff working in community settings. From a care home perspective it was noted that the ethos of the home could impact on the uptake of courses available.

4.13.9 Generally there is good awareness of NHS and Hampshire County Council care at the end of life training programmes and these are widely supported.

4.13.10 Winchester and Eastleigh Healthcare Trust pointed out that it was wrong to assume that all nurses are able to provide palliative care without appropriate training, and therefore provided general training in this area for all staff.

4.13.11 In Southeast Hampshire the LCP facilitator provides training for practice based nursing staff with external provision of post registration training through Southampton University. Additional support is available through the specialist palliative care teams and local hospices.

4.13.12 Some areas reported that Department of Health funding is available for district nurses, community hospital staff and healthcare assistants. Additionally there is access to, and contributions from, those involved in providing palliative care support to specific groups such as those with mental health problems or dementia and those with learning disabilities.

4.13.13 Hospices reported provision of, and access to, a range of in-house and external training courses, including training of medical students. Hospices take a strong lead in providing training in conjunction with specialist teams.

4.13.14 The need to educate the public about the issues associated with death and dying was raised by a number of stakeholders. It is clear that the taboos and discomfort around death and dying do have a detrimental impact on the ability of people to prepare for the end of their lives. Eastleigh Southern Parishes Older Peoples Forum was addressing this directly by providing an educative programme to help people take a more informed approach to this difficult subject.

4.13.15 The CABx also reported the impact that coping with dying can have on some families, highlighting issues such as debt, access to welfare benefits and housing as potential problem areas. The complexity of the pattern of service delivery requires help to be given to people attempting to navigate through systems of support that are generally available but not always widely understood.

In Conclusion

4.13.16 There is a variety of arrangements in place to respond to the needs of staff with regard to training. These include national and locally developed programmes. Training programmes are frequently developed to help support services to people with cancer but many are equally applicable to people with other diagnoses.

4.13.17 Although it was not clear how staff needs are assessed, pressures on frontline staff, and the attitudes of managers, are factors in determining uptake of the training available.

4.13.18 There is a shared approach to training across different sectors. Hospices and the national programmes were key drivers of this work.

4.13.19 There is no clarity about what will happen when the national funding to support the roll-out of the GSF and LCP finishes. There is therefore a pressing need to identify who will `train the trainers' and support the roll-out of these training programmes across Hampshire. In the current financial climate, with associated organisational and staff changes this is an issue that needs to be kept under careful review.

5 Appendices

5.1 Glossary and Definitions








Formal Carers







Informal Carers

















Third Sector




Advanced Care Planning (see also definitions)

Citizens Advice Bureau

Care at End of Life

Chronic Obstructive Pulmonary Disease

Commission for Social Care Inspection

End of Life Care Programme

Carers that are paid

General Medical Services

General Practitioner

Gold Standards Framework (see also definitions)

Gold Standards Framework Care Homes

Hampshire County Council

Health Overview and Scrutiny Committee

Carers that are not paid, often relatives, friends or neighbours

Joint Equipment Store

Liverpool Care Pathway (see also definitions)

National Council for Palliative Care

National Service Framework

National Institute for Clinical Excellence

National Vocational Qualification

Out of Hours (normally 6 pm -8 am)

Occupational Therapy

Patient Advice and Liaison Service

Practice Based Commissioning

Primary Care Trust

Preferred Place of Care (see also definitions)

Quality Outcomes Framework

Strategic Health Authority

Specialist Palliative Care

Southampton University Hospitals Trust

Organisations that are not fully in the private or public sector, e.g., voluntary organisations, community or faith groups.
Tender Loving Care

World Health Organisation

Whole time equivalent


Care at the End of Life embraces a wide range of services that may be termed supportive and palliative. As there are a number of different ways to interpret what is meant by these terms the Committee has used the National Institute of Clinical Excellence definitions. These are as follows

`supportive care' helps the patient and their family to cope with cancer and the treatment of it- from pre-diagnosis and treatment to cure, continuing illness or death and into bereavement. It helps the patient to maximise the benefits of treatment and to live as well as possible with the effects of the disease. It is given equal priority alongside diagnosis and treatment.'

`Palliative care' is the active holistic care of patients with advanced progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatment.'

Although these definitions were originally developed for people with cancer they are now widely accepted as being equally applicable to people with other advanced progressive illness or disease.

The following terms have been used throughout the document to refer to the tools developed as part of the End of Life Care Programme to improve communication, continuity of care, advanced care planning and support for patients and carers

The Gold Standard Framework (GSF) helps GPs to plan care for this group of patients and to make sure that patient and families needs are shared with other involved in providing care or support

The Liverpool Care Pathway (LCP) is a pathway to support the transfer of learning from hospices to other settings. This tends to be used in the last days or hours of life to help improve communications with patients and their families as well as anticipate needs relating to symptom control or other support.

The Preferred Place of Care Plan (PPC) is a patient held record of care that allows information about individual preferences for care and other services to be recorded. T

Advance Care Planning (ACP)

ACP is the process of planning for possible health care decisions that may arise in the future and it particularly relates to end of life care. ACP involves providing appropriate information so that discussion and review of choices about care between individuals, their families, health and social care professionals can take place. Discussion may result in the drawing up of a statement of views which would improve care, allow discussion to avert difficulties at a later date and enable family involvement and care to be more patient focused. ACP is ongoing and not just a one-off event. These decisions need to be recorded. This can be in a variety of ways, mainly in writing, although an oral decision can be made and appropriately recorded.

Under common law, patients can make advance statements in which they refuse specific medical treatments. These can be legally binding and if they are, doctors are obliged to comply with them. If there is any doubt about whether an advance statement refusing medical treatment is legally binding, GPs should first refer to a

consultant and then consider taking legal advice as well. Advance statements refusing treatment are sometimes also called, `living wills,' `advance directives' or `advance decisions.' The Mental Capacity Act 2005, which becomes law on 1 April 2007, makes new law about ACP, written statements and advance decisions to refuse treatment. It places service providers under a duty to support people with impaired mental capacity so that they can make their own decisions about the health and social care that they receive. People needing such support might include people with dementia, people with learning difficulties and people at the end of a terminal condition. Under the Act, service providers will also be legally required to take any ACP into account when assessing the best interests of a patient who lacks the capacity to make a decision for him or her self. Care homes will need to ensure that they understand the requirements of the Act before it comes into force.

The NCPC has published more detailed guidance about the Mental Capacity Act. For more information see www.ncpc.org.uk

5.2 Stakeholder Organisations

Care at End of Life Review - Stakeholders

Stakeholder Organisations

Notified of Review

Invited to Provide Evidence

Provided Evidence

Hampshire County Council: Adult Services


Presentation + Written Response

All District Councils in Hampshire


    · Basingstoke and Deane


    · East Hampshire


    · Eastleigh



    · Fareham


    · Gosport


    · Hart


    · Havant


    · New Forest


    · Rushmoor


    · Test Valley


    · Winchester


Hampshire Primary Care Trust


    · North


Presentation + Written Response

    · Southeast


Presentation + Written Response

    · Southwest (incl. Mid Hampshire)


Presentation + Written Response

South Central Strategic Health Authority


Presentation + Written Response

South Central Ambulance Service


Presentation + Written Response

Central South Coast Cancer Network


Presentation + Written Response

Surrey, West Sussex and Hampshire Cancer Network


Presentation + Written Response

Stakeholder Organisation

Notified of Review

Invited to Provide Evidence

Provided Evidence

North Hampshire Hospitals Trust


Presentation + Written Response

Portsmouth Hospitals Trust


Presentation + Written Response

Southampton University Hospitals Trust


Presentation + Written Response

Winchester and Eastleigh Healthcare Trust


Presentation + Written Response

Portsmouth City Primary Care Trust


Presentation + Written Response

Southampton City Primary Care Trust


Presentation + Written Response

Countess of Brecknock Hospice



Countess Mountbatten House


Visit + Written Responses + Presentation

Oakhaven Hospice Trust


Visit + Presentation

The Rowans Hospice


Visit + Presentation

Phyllis Tuckwell Hospice


Presentation + Written Response

The Rosemary Foundation (Hospice at Home)



Midhurst Specialist Palliative Care Service



BUPA Care Services



BUPA Hospital (Southampton)


Hampshire Registered Nursing Home Association


Written Response

Hampshire Care Home Association


National Council for Palliative Care



Age Concern England


Referred to national policy paper

Help the Aged


Referred to national policy paper

Marie Curie Cancer Care


Presentation + Written Response

Macmillan Cancer Support



Sue Ryder Care


Wessex Cancer Trust


Carers Together


Community Action Hampshire


Stakeholder Organisation

Notified of Review

Invited to Provide Evidence

Provided Evidence

Community First East Hampshire


Eastleigh Community Services


Fareham Community Action


Gosport Voluntary Action


Hart Voluntary Action


Havant Council of Community Service


Portsmouth Council of Community Service


Rushmoor Voluntary Service


Southampton Voluntary Service


Test Valley Community Action


Winchester Area Community Action


Hampshire Patient and Public Involvement Forums:


    · Blackwater Valley and Hart


    · East Hampshire


    · Eastleigh and Test Valley South


    · Fareham and Gosport


Written Response

    · Mid Hampshire


    · New Forest


    · North Hampshire


    · South Central Ambulance


Written Response

Eastleigh Southern Parishes Older People's Forum


Presentation + Written Response

Knowledge experts


    · Professor Julia Addington-Hall (U of Southampton)


Presentation + Papers

    · Professor Irene Higginson (Kings College London)