House of Commons - Health - Minutes of Evidence

Select Committee on Health Minutes of Evidence

Memorandum from the Department of Health (PC 18)

HEALTH SELECT COMMITTEE: HOSPICES AND PALLIATIVE CARE

Contents

Supporting materials:

Annexes

1. OVERVIEW

The need for palliative care

1. Around 520,000 people die each year in England. Cancer accounts for a quarter (130,000) of these deaths, coronary heart disease for 22% (114,000), respiratory disease for 16% (83,000) and cerebrovascular diseases, including stroke, 11% (57,000). Most deaths occur in people over the age of 75 years.

2. Over the past century there has been a marked change in the relative frequency of different causes of death. A hundred years ago cancer accounted for less than 5% of all deaths. Ninety years ago infectious diseases accounted for nearly a quarter of all deaths, now this figure is less than 1%. In the early 21st century most deaths relate to chronic progressive non-communicable diseases. These have varying trajectories. Although the likelihood of eventual death from these conditions can often be predicted, the time course of the illness is often far from predictable.

3. Place of death has also changed radically over the past 100 years. Around 1900 almost 90% of deaths occurred at home. By 1950 this had fallen to roughly one-half of all deaths. The most recent figures show that less than 20% of all deaths occur at home, with the large majority occurring in hospitals and care homes. Only 4% of all deaths occur in hospices.

4. Patients with advanced incurable illnesses may suffer from a range of physical and psychological problems including pain, fatigue, loss of appetite, breathlessness, nausea and vomiting, constipation or diarrhoea, loss of bladder function, loss of memory or cognitive function, anxiety and depression. They may lose the ability to lead an independent life and to care for themselves. They may become socially isolated and may experience spiritual or existential concerns.

5. Much of the day to day care for patients with advanced incurable illness is provided by their families and informal carers. Although this care is often provided willingly, it can place a great burden on the carers. In addition the carers may experience difficulties in coming to terms with the likely loss of a loved one.

6. To meet these needs patients and carers should have access to a range of services which can provide physical, psychological, social and spiritual support to optimise their quality of life. These services need to be available in the community, in hospitals and care homes and in hospices. Co-ordination of care between all of these sectors is of paramount importance.

Definitions

7. The World Health Organisation (WHO) defines palliative care as ". . . 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 treatments." (WHO: National Cancer Control Programmes: policies and guidelines. Geneva: WHO. 2002)

8. Palliative care is the responsibility of all health and social care professionals who deal with patients with advanced incurable illness. It may be helpful, however, to distinguish between two groups of staff:

— Professionals who specialise in palliative care (eg consultants in palliative medicine, palliative care nurse specialists and staff working in hospices);

— Other staff providing care for the patient and family/carers (eg GPs, district nurses, hospital doctors, allied health professionals, staff in care homes, etc). For these staff the provision of palliative care forms a variable part of their normal workload. Many of these professionals are specialists in their own field of expertise, but are "generalist" in relation to the delivery of palliative care.

Development of hospices and specialist palliative care services

9. The role of the voluntary sector in the development and funding of hospices and specialist palliative care services cannot be over-emphasised. The modern hospice movement owes a huge debt of gratitude to the vision and drive of Dame Cicely Saunders, who established St Christopher's Hospice in South London in 1967. At that time Dame Cicely felt that the NHS was not yet ready to provide the holistic patient-centred care which she recognised that patients needed.

10. There are now 172 adult inpatient units (2,637 beds), 27 children's units (201 beds) in England the large majority of which are managed (and predominantly funded) by the voluntary sector.

11. Alongside the development of inpatient units, specialist palliative care services have been established in the community and in acute hospitals over the past 30 years or so. Once again charities have had an extremely important role in these developments. Macmillan Cancer Relief has provided pump priming funds for many of these services and Marie Curie Cancer Care provides nursing services for patients in their own homes.

12. There are currently some 264 specialist palliative care home care teams, 81 hospice at home services, 211 day care services and 220 hospital support teams in England.

13. It should be recognised that the overwhelming majority of the workload of hospices and specialist palliative care services currently relates to patients with advanced cancer and their families/carers.

Service provision around 1999-2000

14. In 1999 the Department of Health commissioned the National Council for Hospice and Specialist Palliative Care Services (NCHSPCS) to undertake a survey of services in England. This showed marked variations in the levels of provision between the then eight Health Regions in relation to inpatient beds and specialist workforce availability.

15. Estimates made by the NCHSPCS for the year 2000 indicated that total expenditure on adult specialist palliative care services was around £300 million per annum, of this around £170 million was provided by the voluntary sector and £130 million was provided by the NHS. Around £215 million related to the provision of inpatient services managed by voluntary sector providers (£150 million voluntary and £65 million NHS) and a further £34 million related to NHS managed inpatient units. Expenditure on community specialist palliative care services amounted to £37 million (£20 million voluntary; £17 million NHS) and expenditure on hospital specialist palliative care teams amounted to £14 million (NHS).

Care provided by "generalists" in palliative care

16. It is extremely difficult to quantify the care provided by "generalists" in palliative care. Many patients with advanced incurable illnesses spend the vast majority of their time with the illness living at home or in a care home. Their healthcare during this time is provided largely by GPs (total around 32,000 in England) and by community/district nurses (around 53,000 (40,000 Whole Time Equivalent) in England at September 2002). On average around 17 patients on a GP's list will die in any one year, of which three will die at home and a similar number in older people's accommodation or nursing homes for which a GP is medically responsible. Most GPs consider that palliative care is a small, but important part of their workload. A survey of community nurses in Wales indicated that up to 25% of their time was devoted to palliative care.

17. Within hospitals the care of patients with advanced incurable illness and those who are dying is provided by a wide range of staff, including consultants (eg physicians, surgeons, gerontologists, oncologists, etc), junior medical staff, ward-based nurses and allied health professionals.

18. Many healthcare professionals who care for the dying have received little or no postgraduate training in palliative care and some (especially more senior staff) may not have received any training before registration.

Challenges in the delivery of high quality care

19. Key challenges related to the provision of specialist palliative care services include:

— Extending specialist services to meet the complex needs of patients with diseases other than cancer where appropriate.

— The uneven distribution of specialist services across the country.

— The dependence of many hospices on voluntary fundraising for a large proportion of the care they provide.

— Constraints on workforce expansion, especially in relation to consultants in palliative medicine.

20. Key challenges related to the provision of palliative care in general include:

— Enabling more patients to live and die in their preferred place of care. Many patients who would choose to die at home or in a care home are currently dying in acute hospitals.

— Improving symptom control for all patients with advanced incurable illness.

— Improving assessment of patients' needs, eliciting their concerns and communicating with them effectively.

— Improving inter-professional communications with regard to palliative care.

— Improving coordination of care between teams and across institutional boundaries (including health and social care boundaries).

— Improving coordination between daytime and out of hours services.

— Ensuring that adequate out of hours medical, nursing and pharmacy services are available.

— Ensuring that equipment needed by patients at home can be provided without delay.

— Reducing unnecessary transfers from patients' normal place of residence to an acute hospital in their final days of life.

— Improving the care provided for families and carers.

Government policy initiatives to improve palliative care

21. National policy in relation to palliative care is set out in the NHS Cancer Plan and in the National Service Frameworks (NSFs) for each of the following areas: older people and coronary heart disease, and will be addressed in the forthcoming children, long term conditions and renal services NSFs.

22. In addition to this the Department of Health has commissioned the National Institute for Clinical Excellence (NICE) to develop guidance on supportive and palliative care services. This is due to be published in March 2004. Although this will focus on services for adults with cancer, it is anticipated that it will have wider relevance.

23. Three of the four key aims of the NHS Cancer Plan (2000) are relevant to palliative care. These are:

— To ensure people with cancer get the right professional support and care as well as the best treatments.

— To tackle inequalities.

— To build for the future through investments in workforce and in research.

24. To support these aims in relation to palliative care, the NHS Cancer Plan committed an additional £50 million for specialist palliative care services by 2004. By 2002 it was clear that spending on specialist palliative care by the NHS would fall short of this commitment. A National Partnership Group on Palliative Care was therefore established, chaired by the National Cancer Director, the first task being to ensure the commitment was met.

25. In 2003 a £50 million central budget for specialist palliative care was established. Primary Care Trusts, NHS Trusts and voluntary sector providers working through Cancer Networks, were asked to develop action plans in relation to their share of this budget. These allocations have now been made and the National Partnership Group is monitoring expenditure against the action plans.

26. A further £6 million was allocated between 2001 and 2004 as part of the NHS Cancer Plan to improve the training of district nurses in relation to palliative care. It was anticipated that this would benefit both cancer and non-cancer patients. Early indications are that this funding has enabled participation by about 10,000 nurses and other health care professionals in continuing professional development programmes and that this has been very well received. A formal evaluation is currently in progress.

27. As part of the Supportive Care Strategy outlined in the NHS Cancer Plan, work is being taken forward to improve provision of information to patients at all stages in their illness. Accredited training programmes in advanced communication skills are also being developed in association with NHSU and leading cancer charities.

28. In anticipation of the recommendations in the NICE guidance on supportive and palliative care, the Cancer Services Collaborative-Improvement Partnership (CSC-IP) is giving priority to the development of service improvement programmes for generalists in palliative care. The CSC-IP is working closely with Macmillan Cancer Relief and Marie Curie Cancer Care to implement the "Gold Standards Framework" (GSF) and the "Liverpool Care Pathway" (LCP) for the dying.

29. The Gold Standards Framework aims to enhance the quality of palliative care services provided by GP practices. It is already being implemented in some 500 practices across the UK. The Liverpool Care Pathway is a tool to help front-line clinicians who are caring for patients in the last days of life. It has been successfully used in acute hospitals and is also suitable for use in care homes.

30. A new initiative to improve end of life care for all patients irrespective of diagnosis has recently been announced by the Secretary of State for Health. This forms part of the policy to improve choice, responsiveness and equity within the NHS which was set out in "Building on the Best: Choice, Responsiveness and Equity in the NHS" (December 2003). £12 million will be provided for the End of Life care programme between 2004 and 2006. This will build on the work being undertaken by the Cancer Services Collaborative. It will focus on enhancing skills and redesigning services to meet the needs of patients, irrespective of their diagnosis.

2. HEADLINE COMMENTS ON ISSUES RAISED IN THE HEALTH SELECT COMMITTEE TERMS OF REFERENCE

Choice

1. Over the past year the government has given increased emphasis to the importance of patients being able to make choices in relation to many different aspects of healthcare. During the Autumn of 2003 a major public consultation on "Choice, responsiveness and equity" was led by the National Director for Patients and the Public, Harry Cayton. This led to the publication of "Building on the Best" in December 2003. This report highlighted the importance of choices at the end of life. In particular it emphasised the need to enable patients who are nearing the end of life to make choices about where they would prefer to live and die.

2. Further to "Building on the Best" the Secretary of State announced at the end of December 2003 that £12 million would be invested over the three years 2004-06 on an "End of Life Care" initiative to support this objective (see paragraph 113 and following).

Equity

3. Equity of access to health services on the basis of need is one of the fundamental principles of the NHS. This was re-emphasised in the NHS Plan and in "Building on the Best".

4. The government recognises that provision of palliative care services has not been equitable. The greatest inequity relates to the imbalance of services provided for cancer patients and those with other advanced incurable illnesses. In addition to this there are inequalities in specialist palliative care services across the country, as highlighted in the survey undertaken by NCHSPCS for the Department of Health in 1999.

5. The government is firmly committed to tackling inequalities in palliative care provision. This was one of the key objectives underlying the NHS Cancer Plan commitment to spend an additional £50 million on specialist palliative care. The new End of Life Care initiative is a first step in providing access to high quality care for all patients, irrespective of diagnosis.

Communication between clinicians and patients

6. The importance of good communication between clinicians and patients was emphasised both in the NHS Plan and in the NHS Cancer Plan and will be covered in more detail in the forthcoming NICE guidance on Supportive and Palliative Care.

7. Although universities now routinely include communication skills training as part of the curriculum for healthcare professionals, this was not the case in the past. High quality research has demonstrated the benefits of communication skills training for senior clinicians working in the field of cancer.

8. Building on this, the Department of Health, in association with the NHSU, is developing accredited training programmes for senior cancer clinicians. It is envisaged that once these are established they will be made available to clinicians managing other advanced incurable illness.

The balance between a patient's wishes and those of carers, families and friends

9. The ethos of palliative care has always been that care should be provided both for patients and for families and carers. The Government supports this principle. The topic will be covered in detail in the forthcoming NICE guidance.

Meeting the needs of all patients

10. The Government is committed to meeting the needs of different groups and individuals within society and to challenge discrimination on the grounds of age, gender, ethnicity, religion, disability and sexuality. It is recognised that patients from some ethnic minority communities have not in the past accessed specialist palliative care services in the numbers that would be anticipated. We are also aware of very good practice amongst specialist palliative care service providers in some parts of the country in relation to working closely with minority ethnic communities to make services available on the basis of need. We will seek to promote the spread of good practice across the country through the National Partnership Group on Palliative Care and the Coalition for Cancer Information.

Support Services

11. The Government recognises that for patients, families and carers to be able to exercise choice over where they live and die, they need adequate health and social services going into the home. Without the practical assistance inside and outside the home, such as cleaning, shopping, help with personal care, such as bathing and dressing, adaptations to the home and help with other dependants, it is difficult for patients to remain with their families in their preferred place of care. The Government has introduced freedoms and flexibilities through the Health Act 1999 to allow greater integration between health and social care services and increasingly other council services such as housing. In April 2004, a single assessment process for older people will be implemented which requires assessments to be person-centred, exploring pain control, reactions to loss and bereavement, mental health and emotional issues.

Quality

12. National Service Frameworks and NICE guidance documents set the template from which national standards and competencies are derived. The NICE supportive and palliative care guidance, although focused on services for cancer patients, nevertheless will inform service models for other groups of patients with similar needs. We have developed standards from the NICE guidance that will be included in the Manual of Cancer Services Standards and assessed as part of a peer review process. The peer review approach is a driver for quality improvement and has strengthened team working across the country. We are establishing close links with the shadow Commission for Healthcare Audit and Inspection to ensure that quality is consistent across both the NHS and independent sector.

Age Groups

13. As already stated the Government is committed to equity and to ensuring that all those who require care receive the care they need, irrespective of age. The Government is aware of research indicating variation in referral to specialist palliative care services between different cancer types and on the basis of age. It is, however, difficult to assess whether this represents unequal service provision or age discrimination. The Government is committed to improving data collection processes in order that this can be better audited. The Government is also aware that women and people over the age of 85 years are less likely than others to die at home. In many cases this is likely to be due to a lack of a family member or informal carer within the home.

14. With regard to needs of children, a National Service Framework is being developed which will include consideration about how palliative care for children can be improved. In addition, NICE have been commissioned to develop service guidance on child and adolescent cancer, which will include palliative care and bereavement support. It is due to be completed by February 2005.

Governance

15. Governance issues relate both to the NHS and voluntary sector. In the voluntary sector, as the vast majority are independent charities, they are regulated by the Charities Commission. In addition, independent hospices come under the Care Standards Act and are assessed and regulated by the National Commission for Care Standards—soon to become the Commission for Healthcare Audit and Inspection.

16. The Government recognises that we need to work closely with these organisations to ensure that governance arrangements are in place in both the voluntary and statutory sector, securing high quality, safe and responsive services for all patients.

Workforce

17. The Government recognises that the current numbers of consultants in palliative medicine is inadequate in relation to the demands on the service and is unevenly distributed across the country. However, based on the number of specialist registrars currently in training and the age profile of the existing consultant workforce, the number of consultants is expected to grow substantially over the next few years. It is also recognised that a large proportion of trainees in palliative medicine are women who may choose to work part time as consultants.

18. The Government's workforce census shows 155 consultants in September 2002. Looking at Specialist Registrars (SpRs) in training we would expect around 60 to complete their training by September 2005. Net retirements in that timeframe are likely to be in single figures, so this suggests we could have enough trained specialists to increase numbers by about a third by September 2005.

19. Between 1997 and September 2002 there was a net increase in nurses working in the NHS of 50,000 and last year there was an increase of 17,000 over the previous year. This increase will enable the recruitment of additional district nurses, additional nurses on wards caring for patients with terminal illnesses, additional cancer site specific specialists and palliative care nurse specialists.

Finance

20. The Government recognises that for too long the NHS has relied upon the goodwill and funding of the charities and is fully committed to see that the NHS contribution to the costs hospices incur in providing agreed services, increases. This, and tackling inequalities of access, was a key commitment in the NHS Cancer Plan. In 2000 it was estimated that the average contribution of the NHS to the costs of services managed by the voluntary sector was 28%. Since then, an additional £50 million has been invested in specialist palliative care services (including hospices). This represents an increase of nearly 40% in NHS funding for specialist palliative care over the 2000 figures and an increase of about 15% on all funding for specialist palliative care.

21. To ensure that the funding commitments made in investment plans are delivered, a special monitoring exercise, set up with the approval of Ministers and the Review of Central Returns steering committee, is being conducted.

SUPPORTING MATERIALS

3. THE NEED FOR PALLIATIVE CARE, AND WHERE PEOPLE WITH ADVANCED ILLNESS LIVE AND DIE

— Around 520,000 people die in England each year;

— Many of these deaths are attributable to chronic diseases;

— Many patients experience severe symptoms and psychosocial problems in their last months of life;

— Over 50% of all patients wish to be cared for and to die at home;

— In practice, less than one in five patients die at home and around two thirds die in hospitals;

— Only 25% of cancer patients achieve a home death; more than 50% die in an NHS hospital;

— There are significant variations in the percentages of home deaths across England.

The need for palliative care

1. Several major studies have been undertaken to assess the prevalence of symptoms amongst cancer patients and amongst those with progressive non-malignant disease in the last year of life. These have usually been based on reports of bereaved carers. These have shown that both groups of patients have very high incidences of some symptoms, including pain, trouble with breathing etc. These are detailed in Table 1, Annex 1.

Where patients die

2. In 1900, 90% of deaths occurred at home, with most of the rest occurring in workhouses. In 1950, around 50% of deaths (cancer and non-cancer) occurred at home. Now, less than 20% of all deaths occur at home. This figure has been reasonably stable over the past decade or so.

3. Around 540,000 people die in England and Wales each year. Nearly two thirds of these deaths occur in people over the age of 75 years. In 2000, 67% of deaths from all causes occurred in a hospital or similar in-patient NHS or non-NHS establishment; 19% occurred at home and 4% in hospices. The remaining 21% die in a variety of other institutions (eg. care homes, private nursing homes etc). The proportion of patients who die at home decreases with age, with home deaths accounting for 29% of all deaths in patients aged 45-64 years and only 11% on those over 85 years. Conversely the proportions dying in care homes increases with age.

4. Amongst cancer patients, the figures for place of death are roughly:

50% in acute hospitals;

25% at home;

18% in hospices; and

7% in other institutions (eg care homes).

5. The figures for all deaths and the age profile are given in Table 2 in Annex 1.

Children

6. The annual mortality rate for children aged 1-17 years with life-limiting conditions is estimated to be 1 per 10,000. Accurate prevalence of severely ill children with life-limiting conditions is not available. But figures tend to converge on 10 per 10,000 children aged up to 19 years per annum. This indicates that in any year there will be some 11,000 children with a life-limiting condition, about half of whom will need active palliative care at any one time. This figure is likely to increase as we see the potential for even more successful interventions with children and more children who would have died in early-mid childhood living into adulthood.

7. There is also a move to enable more technology dependent/ventilated children to leave hospital, thus increasing the need for home support and occasional respite care breaks.

Where would people with advanced incurable illness choose to live and die?

8. We know that most people would prefer to remain at home rather than go into a hospice or hospital. For example, Marie Curie Cancer Care has carried out research projects that have looked at people's preferences regarding place of death. In their studies, more than 50% of respondents—and in some cases more than 75%—said they wanted to die at home. However, the reality is that only 25% of cancer patients achieve a home death, with more than 50% still dying in an NHS hospital (ref: Julia-Addington-Hall, Care of the dying and the NHS. Briefing paper for Nuffield Trust, March 2003).

9. The Government acknowledges that many more patients would choose to die at home if they could be adequately supported in the home environment. However, there are significant variations in the percentages of deaths at home across England and—directly related to that—in the ability of patients to choose where they die. A study of patients dying from cancer at home by the National Centre for Health Outcomes Development (NCHOD) (February 2003) at the request of the Department of Health, showed that, at electoral ward level, the percentage varied from around 10% to around 45%. To tease out the cause and effect of why this is the case, the Department of Health commissioned NCHOD to undertake further analyses, due to report in Spring 2004. The report will cover cancer and non-cancer deaths at home, the feasibility of including care homes deaths as home deaths, the impact of age factors and a comparison of area home death rates with indices of deprivation and ethnicity.

4. WHAT IS PALLIATIVE CARE?

— Holistic care by multi-professional teams for patients, their families and carers whose illness may no longer be curable;

— Care which enables patients to achieve the best possible quality of life during the final stages of their illness.

Definition of palliative care

10. The World Health Organisation (WHO) defines palliative care as ". . . 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 treatments." (WHO: National Cancer Control Programmes: policies and guidelines. Geneva: WHO. 2002). Palliative care is holistic care by multi-professional teams for people, their families and carers whose illness may no longer be curable. It enables them to achieve the best possible quality of life during the final stages of their illness.

Specialist palliative care

11. Many patients need assistance from professionals who specialise in palliative care, (consultants in palliative medicine, palliative care nurse specialists and staff working in hospices). These staff are specially trained to advise on symptom control and pain relief and to give emotional, psychosocial and spiritual support to patients, their families, friends and carers, both during the patient's illness and into bereavement. Specialist palliative care services are most effectively delivered by multi-professional teams, bringing together the expertise of, for example, consultants in palliative medicine, nurse specialists, social workers, allied health professionals and experts in psychological and spiritual care. Specialist palliative care teams deliver care in hospices, in the community and in hospitals. In some cases specialist palliative care teams take a direct responsibility for the care of a patient. In others, the team will advise the patient's usual carers. Specialists in palliative care also have an important role in providing education for other health and care professionals.

General palliative care

12. Much of the care for patients with advanced incurable illnesses is provided by GPs, district nurses, hospital doctors, ward nurses, allied health professionals, staff in care homes, etc. For these staff the provision of palliative care forms a variable part of their normal workload. Many of these professionals are specialists in their own field of expertise, but are "generalists" in relation to the delivery of palliative care.

Supportive care

13. The diagnosis and treatment of those chronic diseases can have a major impact on the quality of patients' lives and those of their families and carers. Patients, families and carers need access to support from the time that the illness first manifests itself through to death and into bereavement.

14. The National Council for Hospice and Specialist Palliative Care Services (NCHSPCS) has defined supportive care for people with cancer as care that: "helps the patient and their family cope with cancer and treatment of it—from pre-diagnosis, through the process of 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". (NCHSPCS Definitions of Supportive and Palliative Care. Briefing paper 11, London: NCHSPCS; September 2002). This definition has been adopted in the draft guidance under development by the National Institute for Clinical Excellence (NICE): "Improving Supportive and Palliative Care for Adults with Cancer".

Children

15. There are essential differences between palliative care for children and adults. Palliative care in this area supports children and young people with a variety of complex needs who are expected to die in childhood but who require quality of life and benefit from the activities and stimulation common to other children. Care may extend over a number of years.

16. For children with serious life-threatening illnesses, the major burden of care and need for support arises in the community. Care and support for children with life-threatening and limiting illnesses is often preferred in the family home. This is provided by paediatric community nursing teams.

17. Hospice care for children can be an important element of the care package. Children's hospices differ significantly from adult hospices. Cancer is not the major cause for hospice care in childhood. Children with life-threatening illness increasingly live much longer than in the past. The hospice ethos is therefore geared to provide a child-centred environment meeting the needs of a growing, developing child, and to meet other needs such as allowing family members to either stay with, or visit the child in the hospice, respite care needs and care for siblings.

5. HOSPICE AND SPECIALIST PALLIATIVE CARE SERVICE PROVISION IN ENGLAND

— Three quarters of adult in-patient specialist palliative units in England are managed by the voluntary sector.

— There is inequity of service provision, with affluent areas better provided for than poorer areas.

— 90-95% of referrals are for patients with cancer.

— Services provided include domiciliary support and personal care.

Who provides hospice and specialist palliative care services?

18. In the United Kingdom, palliative care is provided by a mix of NHS services, local independent hospices and national voluntary organisations. Services may be provided at home, in a hospice or palliative care unit, the hospital or at a hospice day centre. Palliative care was first developed in the UK by the voluntary hospice movement for patients with cancer and, importantly, three quarters of adult in-patient specialist palliative care units in England are managed by the voluntary sector. Since 1985 the number of available hospice beds has increased by over two-thirds, the number of day hospices has increased four-fold and the number of home care teams three-fold. However, because of the historic basis for palliative care, there is frequently significant variation from locality to locality in the provision of services and in their funding, often with a concentration of hospices in more affluent areas.

19. Service providers include:

— Voluntary/Independent hospices

20. There are 130 voluntary hospices in England, providing 2,147 beds. These are usually local charitable organisations, although a number of hospices are also provided by Marie Curie Cancer Care (through 10 Marie Curie Centres) and Sue Ryder Care (through six Sue Ryder Palliative Care Centres). In addition to in-patient facilities, many local hospices also provide day care; various support therapies, including complementary therapies; social, psychological and spiritual support; and community support, such as Hospice at Home (that is, a service which provides intensive co-ordinated home support to patients with complex needs).

— The NHS

21. This includes in-patient NHS hospices and palliative care units (there are 42 of these in England, providing 490 beds); hospital Specialist Palliative Care Teams (or Support/Symptom Control Teams); and a variety of community care services, including those provided by district and community nurses and through social services departments.

22. See Tables 3a-c in Annex 1 for further information.

Activity (adults)

23. There were approximately 41,000 new patients admitted to inpatient units during 2001, with a total of about 59,000 admissions and 29,000 deaths. 95% of these patients were suffering from cancer. The average length of stay in a hospice was 13 days. About 150,000 patients are seen annually by home care teams; patients may be under the care of a home care team for an average of three to four months. About 151,000 people in the UK died from cancer during 2001 (Minimum Data Sets, 2001-02, National Council for Hospice and Specialist Palliative Care Services).

— National voluntary sector service providers

24. There are three major national voluntary sector providers of palliative care services:

Macmillan Cancer Relief is a key service provider at both a national and local level. There are over 2,000 Macmillan nurses working in posts in almost every local health community in the UK, based in hospitals and the community. These nurses are initially funded by Macmillan with the NHS picking up their funding after three years. There are also 300 Macmillan doctors together with a large number of other posts, including GP facilitators, similarly supported. Macmillan also provides information services, professional education, the CancerVOICES project—which provides a forum for users and carers—and funds the building of facilities and information centres, including facilities on NHS properties.

Marie Curie Cancer Care is the largest single provider of hospice facilities outside the NHS, with 10 hospice centres providing in-patient and out-patient services. There are also about 2,000 Marie Curie nurses who provide hands-on, round-the-clock nursing care for cancer patients in their own homes. Marie Curie nurses care for 50% of all patients who die at home; 30% of the funding for these nurses is provided by the NHS. Marie Curie also provides an education service and runs an important Research Institute.

Sue Ryder Care supports people with a wide range of disabilities and life-shortening diseases, including cancer, as well as their families, carers and friends both in this country and abroad. Sue Ryder Care Centres' range of services include long-term and respite residential care, day care and home care. It has eight neurological care centres and six hospices.

Spiritual support, complementary therapies and domiciliary support

25. For many patients receiving palliative care, spiritual support, complementary therapies, domiciliary support and personal care play key roles. Further information about these services is provided at Annex 3.

6. FUNDING FOR HOSPICES AND SPECIALIST PALLIATIVE CARE

— The NHS Cancer Plan recognised that for too long the NHS has relied upon the goodwill and funding of the charities.

— NHS Cancer Plan pledged to increase funding for specialist palliative care, including hospices, by £50 million per annum by 2004.

— A £50 million central budget has been allocated to Cancer Networks by the National Partnership Group for Palliative Care.

— Primary Care Trusts are responsible within the NHS for commissioning and funding services for their resident population.

Funding for specialist palliative care services

26. Estimates by the NCHSPCS in 2000 (The Palliative Care Survey 1999) indicated that total expenditure on adult palliative care services was around £300 million per annum. £170 million was provided by the voluntary sector and £130 million by the NHS. The average contribution by the NHS to voluntary sector adult hospices was estimated at 28%, although this varied considerably throughout the country.

Estimated expenditure on adult specialist palliative care services (2000)


	Expenditure (£ m)

	Voluntary	NHS	Total
Adult voluntary hospices	150	65	215
NHS bedded specialist palliative care units	-	34	34
Community specialist palliative care teams	20	17	37
Hospital specialist palliative care teams	-	14	14
Total	170	130	300

Source: National Council for Hospice and Specialist Palliative Care Services 2000.

27. The NHS Cancer Plan, building on the principles of the Calman-Hine report (1995), set out actions that need to be taken to ensure high standards of palliative care across the country. It recognised the need to increase NHS support for specialist palliative care, including for voluntary hospices, and committed an extra £50 million per year for specialist palliative care services. This funding, together with the level of existing funding, would mean NHS funding would match that provided through the voluntary sector. The funding was to help tackle inequalities in access to specialist palliative care and enable the NHS to increase their contribution to the cost hospices incur in providing agreed levels of service. At a local level this investment must be based on the agreed strategic plans for palliative care provision within each Cancer Network's service delivery plan. This is the mechanism by which we will see inequalities in palliative care service provision addressed.

28. A survey by Help the Hospices found that statutory funding for independent hospices had increased in cash terms by 14% over the two years from 2000. Total statutory funding was about £66 million in 2001-02 against £196 million charitable expenditure. Hospices continued to be very successful in fund raising and money raised in this manner increased by 22% over those two two years. However, it was clear that only very limited progress was being made across the country towards achieving the £50 million commitment in the NHS Cancer Plan. In a number of cases, funding was not reaching those services for which it was intended.

What action did we take?

Delivery of the £50 million for specialist palliative care for cancer patients, working in partnership with the NHS and voluntary sector.

29. In July 2002, Ministers reaffirmed their commitment to ensuring that the full £50 million announced in the NHS Cancer Plan is spent on specialist palliative care. To this end, Hazel Blears—then Parliamentary Under Secretary of State for Public Health—told the All Party Parliamentary Group that "We [Ministers] have asked the National Cancer Director to work with all Strategic Health Authorities, Cancer Networks and with the voluntary sector through the National Council for Hospice and Specialist Palliative Care Services to develop a mechanism to guarantee this. We have asked them to report by the autumn in time for the planning round for 2003-04. We will be looking to maximise the benefits to patients and reduce inequalities in services across the country. And we will take account of the forthcoming draft palliative care guidance from NICE."

30. To take this work forward, the National Cancer Director set up the joint NHS/voluntary sector/Department of Health National Partnership Group for Palliative Care (NPG). To support the NPG's work, and to speed progress towards the £50 million, Ministers made available an extra £10 million from central budgets for specialist palliative care in 2002-03. This was allocated to Primary Care Trusts on a per capita basis with clear instructions that it had to be spent on specialist palliative care.

31. The NPG was tasked with developing proposals for a new approach to specialist palliative care funding and planning. And, to ensure the NHS Cancer Plan commitment was delivered, Ministers exceptionally set up a central budget of £50 million per annum from 2003-04. The NPG agreed Aims and Principles in which to work and also set criteria for the use of this funding. The primary aim was to deliver the best possible range and quality of specialist palliative care services for patients, to enable them to live and die in the place of their choice. Patients in need of specialist palliative care will be served best by a strong partnership between the NHS and voluntary sector organisations, which values the contributions of all. The approach to achieve this aim was to reflect the following principles:

— Investment in specialist palliative care should be in line with local strategic plans. These should be in line with NICE guidance on Supportive and Palliative Care and agreed jointly by PCTs, working with Cancer Networks and all relevant local partners, including patients and carers.

— Specialist palliative care needs to be available wherever patients need it. Inequalities in access to specialist palliative care services need to be addressed, and it should be recognised that even the best services can improve.

— The planning and funding arrangements for specialist palliative care should be in line with the principles set out in Shifting the Balance of Power, recognising that local decision-making and accountability for delivery are essential.

— Voluntary sector organisations should play a full role in the planning of specialist palliative care services so that the process is transparent and commands the confidence of both the NHS and its palliative care partners. The principles of the Government's compact with the voluntary sector, and the associated Codes of Good Practice, should guide this partnership at both national and local level and the NHS should recognise the burden placed on the voluntary sector in fulfilling its partnership role.

— Information on progress in implementing agreed plans should be shared with all partners.

— Local planning and funding mechanisms for specialist palliative care should encompass capital and revenue investment strategies. These strategies should balance the freedom of the voluntary sector to provide complementary or innovative services with their responsibility, as an equal partner, to be accountable for efficient and effective use of resources. They should also consider the future revenue implications of capital developments.

— The NHS will make a realistic contribution to the costs of agreed services provided by hospices and other voluntary sector organisations but does not seek to be the sole funder or provider.

— The voluntary sector can expect greater security of funding flows, and in return there will be clearer expectations about the contribution the voluntary sector will make to the delivery of the local specialist palliative care strategy.

— Local specialist palliative care planning and funding strategies should, over time, include specialist palliative care services for adults with conditions other than cancer.

32. Primary Care Trusts were required to work together through Cancer Networks and in partnership with local voluntary organisations to identify and agree local spending and development priorities for specialist palliative care in line with the Planning and Priorities Framework and the Local Delivery Plans (LDPs) requirements and to develop investment plans. The LDP states that PCTs should: "Set local targets to achieve compliance with forthcoming national standards on supportive and palliative care (to be derived from NICE supportive and palliative care guidance)". Strategic Health Authorities oversaw this process and are accountable through the normal performance management arrangements. The new arrangements enabled local providers to work together to build on existing services and plan for the future. The NPG then assessed and approved the investment plans.

What the £50 million will buy

33. The investment plans from Cancer Networks for the use of the £50 million central budget stated that the additional funding would buy:

— an additional 66 whole time equivalent palliative care consultants;

— an additional 162 whole time equivalent Cancer Nurse specialists;

— an extra 92 specialist palliative care in-patient beds;

— additional funding support to the voluntary sector, including hospices, Marie Curie and equivalent local services;

— increase the availability of out of hours provision, support hospital and community services; and

— contribute to meeting the specialist palliative care recommendations in the draft NICE guidance.

34. The £50 million—which is not exclusively for hospices, but for specialist palliative care in its entirety—represents an increase of nearly 40% in NHS funding for specialist palliative care over the 2000 figures and an increase of about 15% on all funding for specialist palliative care. The £50 million was additional to any existing NHS funding commitments for specialist palliative care and additional to any extra funding provided since 2000 prior to the allocation of the additional £10 million, meaning that the NHS Cancer Plan commitment was more than met.

35. To ensure that the funding commitments made in investment plans are delivered, a special monitoring exercise—set up with the approval of Ministers and the Review of Central Returns steering committee—is being conducted. In the main, funding was allocated to Cancer Networks during June and July 2003. At the six months monitoring point, all of the 32 Networks who had been allocated funding reported (the plans for the two remaining Networks—making 34 Cancer Networks in total—were not approved until late in the year) as per the table at Annex 2.

Other funding support for hospices and palliative care

— In 2002, the Government was able to provide other support for voluntary hospices by: (i) providing central funding for the full basic salary costs of specialist registrars in palliative care training in voluntary hospices; (ii) reminding Chief Executives of NHS Trusts that: hospices should be reimbursed full agreed pharmacy costs; there should be no charge for transport by ambulance of patients between hospice, hospital and home; and NHS patients in hospices should get free those pathology and imaging services which NHS patients in other settings get.

— £45 million is being invested by the New Opportunities Fund (NOF) in total in initiatives to improve access to adult palliative care (with other funding being allocated specifically for children's services), particularly for disadvantaged groups in inner cities and rural areas. Hospices are/will benefit from this funding. The latest investment from NOF has been extended to conditions other than cancer.

— £6 million to train and support district and community nurses in the principles and practice of palliative care (see paragraph 84).

— £12 million over three years to fund End of Life Care initiatives (see paragraphs 113-117).

Other funding support from the Government for voluntary sector organisations—the Section 64 General Scheme

36. The overall aim of the Section 64 General Scheme (see Annex 4 for information on the Scheme) is to further the Department of Health's objectives in the health and social care fields in England by making discretionary grants that draw on the expertise and initiative of a purposeful and cost-effective voluntary sector. This is in line with the principle of partnership between Government and the voluntary sector that the Department is seeking to encourage and develop.

37. Over recent years we have recommended and funded many large—and also smaller—voluntary organisations that meet the key cancer priorities of supporting people affected by cancer and helping to implement the NHS Cancer Plan. Many of these projects promote empowering patients and/or support the work of black and minority ethnic communities in line with the recommendations of the NHS Cancer Plan. Over recent years, we have allocated about £600,000 per annum to voluntary organisations in the cancer field. Prominent organisations that we have supported include The National Council for Hospice and Specialist Palliative Care Services, Help the Hospices, Macmillan Cancer Relief, Marie Curie Cancer Care and CancerBACUP. Funding has also been provided to the Policy Research Institute on Ageing and Ethnicity, Cancer Equality, Cancer Black Care and the Cancer Resource Centre, all of which provide information and support services for people from black and ethnic minority communities.

Workforce: the supply and retention of staff

38. The investment of £50 million per annum for specialist palliative care is to help tackle inequalities in access to specialist palliative care and to enable the NHS to make a realistic contribution to the cost hospices incur in providing agreed levels of service. Across the country Cancer Networks are planning to invest in an additional 66 consultants in palliative medicine, 162 clinical nurse specialists and 92 specialist palliative care beds.

39. Most Networks are still recruiting, but many—as anticipated—have met particular difficulties with regard to consultant recruitment where adverts have often failed to attract applicants. This is because there are presently insufficient consultants available to fill planned vacancies. Networks are being encouraged to take innovative steps to overcome this particular difficulty, including developing staff grade posts or nurse consultant posts or recruiting Specialist Registrars (ie growing their own consultants) rather than trying to recruit consultants direct.

Funding for children's services

40. The advent of Primary Care Trusts (PCTs) was very significant for palliative care, because, by 2004, PCTs will control 75% of the NHS budget. PCTs are responsible within the NHS for commissioning and funding services for their resident population, including palliative care. They are at the centre of the local planning process, with voluntary healthcare providers such as children's hospices being viewed as important players and partners in the planning, provision and development of these services. The process of discussion leading to NHS funding agreements applies equally to hospices providing support and services to children with life threatening illness and their families as it does for those supporting adults in need of palliative care.

41. In 1994-95 central funding (over £47 million), which had previously been top sliced from general NHS funding and allocated from the centre to assist funding adult hospices, was built into health authorities' general allocations to allow them to commission hospice services providing palliative care—to reflect the identified health needs of their populations and to agree firm service contracts with providers, including the voluntary sector. This was to "include services for the care of children with life threatening illnesses (EL(93)14)".

42. Statutory funding in support of children's palliative care services is therefore available via PCTs. There are no limits or restrictions placed on the level at which funding may be provided; this is for local decision. The Department of Health has actively encouraged the process of children's hospices engaging with PCTs.

43. PCT funding is being increased with the average PCT budget growing by almost £42 million within the next two years. This growth money has not been identified for specific purposes. PCTs will be able to use these extra resources to deliver on both national and local priorities including respite/palliative care for children with life threatening illness.

44. Local Authorities also sometimes fund hospices to provide short term break/respite care for disabled children or other children with major health care needs or life threatening conditions, who have been assessed as being children in need. Resources for social services will increase by 8.4% in 2004-05. This builds on the 9.1% cash increase in 2003-04. The resources available for Personal Social Services in 2004-05 will be £200 million more than the Government previously announced. Of this, £100 million will be for services for children. Disabled children are also a priority area in the Government's Quality Protects (QP) programme. The Disabled Children's QP ringfenced grant rose from £15 million last year to £30 million this year. One of the priority areas for the grant is short term breaks.

45. The New Opportunities Fund (NOF) children's palliative care project programme was launched March 2002 to improve the quality of life of children with life threatening or life limiting conditions and their families. In total, NOF has awarded £45 million to 134 projects, including 70 awards to home-based palliative care teams, 39 awards to bereavement teams and 25 awards—totalling £15 million—to children's hospices.

Future funding challenges

46. There are several factors that will affect the future funding of specialist palliative care services. First the Treasury Cross Cutting Review has set 2006 as the deadline for Government departments to meet the core costs of work commissioned from the voluntary sector. In addition with the introduction of the Payment by Results programme, the arrangements for funding providers of care is being radically changed. The new system will comprise of a nationally set tariff for most service activity, including services provided by voluntary or independent sector providers. The tariff will be built on groups of treatments and activities called Healthcare Resource Groups (HRGs). It is envisaged that non-NHS providers will be subject to this programme in 2007-08.

47. Consequently a large volume of work is underway developing HRGs for the palliative care sector. The NHS Information Authority is working with the Department to extend and improve the coverage of HRGs and they are currently undertaking piloting work for specialist palliative care.

48. Future funding is one of the key tasks under consideration by the National Partnership Group. The group has attempted to estimate the total cost of providing specialist palliative care services in line with the recommendations in the draft NICE guidance.

49. The School of Health and Related Research (ScHARR) at Sheffield University was commissioned to develop a health economic model related to the provision of specialist palliative care. Although the results must be interpreted with caution and cannot provide accurate costings it does show the crude order of magnitude of the cost different levels of service provide. These are shown at Annex 5.

50. Building on this work we are, through the National Partnership Group for Palliative Care (NPG), validating actual costs incurred by a range of hospices which will inform the development of Healthcare Resource Groups (HRGs). Following completion this work will be considered by the NPG who will report back to Ministers on future funding.

7. THE RELATIONSHIP BETWEEN GOVERNMENT, NHS AND THE VOLUNTARY SECTOR

— Voluntary sector organisations are key stakeholders in the development of Government policy.

— Patients in need of specialist palliative care will be served best by a strong partnership between the NHS and voluntary sector organisations which values the contributions of all.

— Such partnerships have been greatly strengthened in recent years at local and national level.

How do the Government, NHS and voluntary sector work together?

51. A vibrant voluntary and community sector (VCS) is a crucial element of a healthy civil society. The revitalisation of the voluntary and community sector is essential for the renewal of civil society. The Role of the Voluntary and Community Sector in Service Delivery—A Cross Cutting Review launched by the Treasury in September 2002 sets out a joint (government and VCS) action plan to support this revitalisation.

52. The 2002 Cross-Cutting Review distinguishes the value of good partnership relations between government and the voluntary and community sector. Forty-two recommendations were drawn up through extensive consultation with the voluntary and community sector and an action plan has been produced to implement the recommendations spanning over the next four years. Six of these recommendations related to the Compact on Relations between Government and the Voluntary and Community Sector in England, published in 1998.

53. The Department of Health and NHS have a long and established history of working with the voluntary and community sector on the development of health and social care policy and service delivery. The development of a partnership approach has been a feature for some years, prior to the introduction of the Compact. We do need to monitor, review and continue to develop and strengthen these partnership arrangements to help ensure healthcare service provision is in line with the needs of the population.

54. The Department of Health is, at present, working (within the Cross Cutting Review) to three broad objectives:

— Encouraging voluntary and community organisations to play a bigger role in delivering health and social care services and shaping policy.

— Supporting the development of the Compact and its associated Codes to create an environment conducive for voluntary and community activity to work in partnership with statutory organisations.

— Encouraging more people to participate in their communities by volunteering in health and social care activities.

55. For further information, see Annex 6.

How do the Government, NHS and voluntary sector work together in providing palliative care services?

56. Three quarters of specialist palliative care in-patient units are managed by the voluntary sector. Ensuring a co-ordinated, effective partnership between the voluntary and statutory sectors at both local and national level is, therefore, essential to providing a good quality, responsive service for patients. However, in the past the voluntary sector has often been taken for granted by the NHS. Sometimes local and national relationships have been strained and, at times, difficult. This has occasionally been caused by difficult interpersonal relationships, but more often than not it has been because of concerns regarding a lack of joint working, consultation and inadequate levels of statutory funding support. For too long the NHS relied on the voluntary sector to provide funding and to lead on innovative developments to meet local and national needs. All these issues were recognised in the NHS Cancer Plan—which, amongst other things, pledged to increase NHS funding for specialist palliative care, including hospices, by £50 million by 2004 (see paragraph 29 and following)—and in the strategic plan for palliative care within the Plan.

Joint working in palliative care in cancer: at national level

57. At a national level, partnership working has been greatly improved through the Supportive and Palliative Care Strategy Co-ordinating Group and the National Partnership Group for Palliative Care. Both groups are chaired by the National Cancer Director, and both include representatives from the NHS, local and national voluntary sector organisations and the Department of Health.

58. The National Partnership Group's current work programme includes considering:

— the rights and responsibilities of the voluntary sector working with each other and with the NHS and vice versa (this work will take on board the current legal position and guidance such as the Compact and Cross Cutting Review and will also feed into "Making Partnership Work" (see Annex 6));

— reference costs for core services as defined by the NICE Supportive and Palliative Care guidance (this will feed into the work being done in the Department of Health on issues such as national tariffs and Healthcare Resource Groups); and

— issues of concern to the voluntary sector, such as continuing care, the potential impact on the voluntary sector of the delayed discharges legislation (see Annex 7) and Agenda for Change; commissioning and contracting between the NHS and voluntary sector; and the development of good practice in Service Level Agreements between the NHS and voluntary sector.

59. The Department of Health has developed a good collaborative working relationship with voluntary bodies, although there have obviously been times when there have been policy differences and issues that have needed to be addressed. The Department particularly values the National Council for Hospices and Specialist Palliative Care Services (NCHSPCS) representative and strategic role for the whole hospice and palliative care movement (NHS and voluntary sector), helping to bring consensus to the national table. Help the Hospices, the Independent Hospice Representative Committee, the NCHSPCS, Macmillan Cancer Relief, Marie Curie Cancer Care and representatives from individual voluntary hospices and the Association of Palliative Medicine are all represented on the National Partnership Group for Palliative Care. The NCHSPCS, Macmillan and Marie Curie are also members of the Supportive and Palliative Care Strategy Co-ordinating Group.

Joint working in palliative care in cancer: at local level

60. At a local level, cancer services in England are organised through a series of local Cancer Networks.

61. The Calman/Hine report ("A Policy Framework for Commissioning Cancer Services", April 1995) broke new ground when it recommended Networks of cancer care, reaching from primary care to cancer units. Cancer Networks were identified as the organisational model for cancer services to implement the NHS Cancer Plan (September 2000). They bring together health service commissioners and providers, the voluntary sector and local authorities. Typically a Network services a population of around one to two million people. There are now 34 Cancer Networks. Networks are not statutory organisations.

62. Strategic Health Authorities and Primary Care Trusts, working through Cancer Networks are required to ensure that structures and processes are in place to plan and review local palliative care services. All relevant stakeholders in the provision and commissioning of palliative care services (health, social care and voluntary) are to be included in this endeavour. As much of palliative care is provided by the voluntary sector, Cancer Networks have established effective partnerships for service planning and provision. These groups bring together those specifically concerned with palliative care service provision ensuring that local voluntary and statutory sector services work in effective partnership and co-ordination. This is a challenging local agenda but one that will enable services to be planned and delivered based on the needs of a Network population.

63. The Government recognised the importance of ensuring that the needs of voluntary sector providers were fully reflected in Cancer Network strategic plans for palliative care services and therefore made available £100,000 central funding—through the National Council for Hospice and Specialist Palliative Care Services—to support voluntary hospice and palliative care providers in working effectively with Cancer Networks in the development of those plans. These local partnerships at Network level have been essential to the work undertaken to develop investment plans for specialist palliative care (see paragraph 29 and following).

Children's services

64. The Department of Health also has observer status on the ACT Council. ACT (Association for Children with Life Threatening or Terminal Conditions and their Families) brings together the spectrum of palliative care services in a council forum.

8A. GOVERNMENT POLICY INITIATIVES RELATED TO THE NHS CANCER PLAN

— The NHS Cancer Plan sets out Government policy for the provision of supportive and palliative care for adults with cancer.

— Supportive and palliative care guidance being developed by NICE will provide further detailed actions needing to be taken by the NHS.

The NHS Cancer Plan

65. The NHS Plan identified cancer services as a high priority to benefit from the improvements it set out. The Plan promised progress on cancer prevention, on research, on access to services and improved patient experience of care. In September 2000, the NHS Cancer Plan (The NHS Cancer Plan; A plan for investment; a plan for reform; September 2000, Department of Health) was published setting out how these improvements would be introduced and how cancer services would benefit from increased investment, both in staff, in services and in equipment to enable faster access to diagnosis and treatment.

66. One of the key aims of the NHS Cancer Plan is to ensure people with cancer get the right professional support and care as well as the best treatment. The Plan announced the development of a supportive care strategy. The development of this strategy has been led by the National Cancer Director, Professor Mike Richards. The key strands of the strategy are:

— assessment of patients' views on the care they have received through the National Cancer Patient Survey (published in 2002);

— improving the provision of information to patients through the establishment of a Coalition for Cancer Information;

— enhancing face to face communication through the provision of accredited training programmes;

— involving users in shaping cancer services;

— enhancing the skills of community nurses in relation to palliative care;

— the development and publication of guidance on supportive and palliative care by the National Institute of Clinical Excellence (NICE);

— taking forward the implementation of the NICE guidance through Cancer Networks and the Cancer services Collaborative "Improvement Partnership"; and

— ensuring delivery of additional NHS funding for specialist palliative care.

67. As with all NHS health services provision, the delivery of the NHS Cancer Plan involves vital roles for both Strategic Health Authorities—whose remit is to quality assure the delivery of health services—and Primary Care Trusts—who are the main commissioners of health services. With cancer services, Cancer Networks also have an essential role to ensure the delivery of a co-ordinated service.

68. To secure this, the NHS is required to set local targets to achieve compliance with the forthcoming national standards on supportive and palliative care (to be derived from the NICE supportive and palliative care guidance).

69. The NHS Cancer Plan, therefore, sets out Government policy for the provision of supportive and palliative care for adults with cancer. It is against the aims set out in the Plan that we must measure progress in providing that care.

"Improving Supportive and Palliative Care for Adults with Cancer"—the NICE guidance

70. The NICE supportive and palliative care guidance is a major component of the NHS Cancer Plan. Work to develop the guidance is being undertaken by Professors Alison Richardson and Irene Higginson from Kings College London. National organisations representing patients, carers and professionals have all contributed to the development of the guidance and bring their own perspective to it. The guidance will provide evidence-based recommendations on those service models most likely to lead to high quality care and services—including recommendations on service models for palliative care. The guidance is also likely to inform the development of effective service models for other groups of patients with similar needs.

71. The guidance bases its recommendations on the needs and wants of patients and covers: co-ordination of care, communication, information, psychological support services, specialist palliative care, general palliative care, social support services, rehabilitation, complementary therapy services, spiritual support services, care and bereavement support services and user involvement. The guidance is due to be published in March 2004.

72. The draft guidance includes 20 key recommendations. These are listed at Annex 8 and the full guidance, with executive summary, can be viewed at www.nice.org.uk (supportive and palliative care, manual, second consultation, October 2003).

Involving patients in the planning of cancer services

73. We have been working with Macmillan Cancer Relief to enable cancer patients to play an active role in Cancer Networks. With joint Government/Macmillan funding, partnership groups have been set up in every Cancer Network. The Cancer Services Collaborative is working with Cancer Networks and their patient partnership groups to implement local changes to improve patients' experience of care via its Patient Carer project. This project supports the involvement of service users in every Cancer Network. Representatives of partnership groups play an active role in the Cancer Network development programme.

Communicating with cancer patients

74. Patients give high priority to quality face to face conversations with clinicians. This is recognised in the NHS Plan, the NHS Cancer Plan and in the Department of Health's response to the Kennedy Report. Good communication is central to empowering patients to be more involved in decision-making. It is recognised that clinicians, like anybody else, find it difficult to give people—patients—bad news. We are, therefore, working to develop advanced communication skills training courses for senior clinicians working with cancer patients. This accredited training will form part of continuing professional development programmes. The training will focus on key and sensitive areas of communication, including conveying complex information, breaking bad news and handling difficult and distressing situations. It will also enhance the confidence and team-working skills of clinical staff.

75. The pilot projects, commissioned jointly between the Department of Health and NHSU with Cancer Research UK and Marie Curie Cancer Care, are now nearly finished. One project is for multi-professionals, one for doctors and one for nurses. Although there are some differences, the projects follow very similar models and all are learner-centred, with role-play and wider work. The pilots will be evaluated. However, we recognise that we need to move this work on quickly and be innovative in how the programme is rolled out. Thousands of health care professionals, including more junior staff, need these skills. The cascade model developed in the pilots will enable leaders in the field to train communication skills facilitators, who will in turn train senior healthcare professionals and so on.

Improved information for cancer patients

76. A key recommendation in the NHS Cancer Plan is that all patients and carers should have access to a range of information materials about cancer and cancer services throughout the course of their illness. This should be high quality, accurate, culturally sensitive, specific to local provision of services, free at point of delivery and timely. The draft NICE Supportive and Palliative Care guidance also makes key recommendations regarding information for cancer patients and carers.

77. A Cancer Information Advisory Group set up under the NHS Cancer Plan recommended that a national Coalition for Cancer Information be established to take forward the work arising from the NHS Cancer Plan and NICE. The Coalition was formed in June 2002 and brings together producers and consumers of cancer information from national voluntary organisations (including Macmillan Cancer Relief, Breast Cancer Care, CancerBACUP and Cancer Research UK), the National Cancer Research Institute, the NHS and Department of Health. It was established to oversee the development of high quality information materials for those affected by cancer. Members of the Coalition are those who produce cancer materials for national dissemination, agree to work to define quality criteria, undergo a formal accreditation process and agree to share information on what they have produced or are intending to produce.

78. Although the provision and delivery of information to patients is recognised as a priority, the process—developing the information, disseminating it and delivering it to the patient—is more complex, as NICE recognises. The Coalition is working to address these issues. The remit of the group has recently been broadened and more members appointed. It is currently developing quality assurance and accreditation guidelines and has established an electronic community. It is working closely with the Department and NHS Direct looking at issues concerning the branding of information and dissemination. It is also working with the Cancer Services Collaborative (Modernisation Agency) on the issue of delivery, that is, ensuring relevant and timely information actually reaches the patient where and when it is required and also supported through appropriate explanations and advice. The Coalition also recognises the need to avoid duplication and to utilise the good resources available through the voluntary sector. It is also considering the effective use of electronic information, video and television and the need to ensure that patients and carers fully understand the information being provided.

Inequity in specialist palliative care in cancer services

79. The Government acknowledges that there are problems associated with the diversity and equity of palliative care provision. Hospice and palliative care first developed in the voluntary sector and services have often grown in a haphazard way. Hospices have, in the main, been established in areas where the general public has been very generous. There is frequently significant variation in the provision of services and in their funding, often with a concentration of hospices in more affluent areas. This has meant that areas of particular social deprivation have not always benefited. As a result, we have considerable inequality of provision throughout the country and an inequity in access to those services. The recognised difficulties with regard to people from black and ethnic minority groups and poorer parts of the community accessing appropriate health care apply equally to specialist palliative care services. And—as many hospices were founded, and are still often managed by Christian-based charitable organisations—there is the added difficulty of people from different faith groups feeling alienated from the hospice movement.

80. A survey conducted by the National Council for Hospice and Specialist Palliative Care Services on behalf of the Department of Health in 2000 showed wide variations between regions, with the percentage of health authorities with an agreed palliative care strategy ranging from 38% in London to 92% in West Midlands. Inpatient provision varied across regions, with similar variations in day care, home care and hospital support services. Addressing these inequalities in access to specialist palliative care services is one of the key aims of Government policy. However, just providing increased investment into specialist palliative care will not necessarily address the inequality of provision. That is why, in developing investment plans for their share of the £50 million (see paragraphs 29 to 35), Cancer Networks were required to plan to address inequalities across the whole network.

Cancer Services Collaborative "Improvement Partnership" programme

81. The Cancer Services Collaborative have established a national "Improvement Partnership" programme focussing on palliative care to ensure that better care for the dying is the touchstone in modernising the NHS. The programme, led by two national clinical experts in palliative care will implement the "Gold Standard Framework" in community palliative care supporting the last months or years of life at home and the "Liverpool integrated care pathway", supporting the last days and hours of life. Both will enable more patients to die in their place of choice supported by a multidisciplinary primary care team. Discussions are in hand to see how these projects can be implemented nationally and sustainably (see paragraph 113 and following) and to extend the benefits to patients with conditions other than cancer.

Workforce development

82. Skills for Health (SfH) are currently managing the UK-wide consultation stage for National Occupational Standards (NOS) and National Workforce Competence Frameworks (NWCFs) developed as a result of previous phases of work. SfH have been asked to develop a competency framework for supportive and palliative care. NOS help to establish the link between the aims and objectives of an organisation and what individuals need to be able to achieve and are of use in the design of education and training and in the design of qualifications. NOS can also be used in the management and development of organisations and individuals, for job design, recruitment, individual and team development, career planning and appraisal. Implementation of the NICE guidance will require upskilling generalists, providing better co-ordination of care, and developing specialists to lead services.

83. The North East London Workforce Development Confederation (NELWDC), as lead WDC for Cancer, are taking forward work looking at a managed career pathway in cancer nursing. The project aims to provide a structure for cancer specialist nurse training to ensure national standards of quality for training, assessment, clinical support, accreditation and awards. This would allow training to be led by workforce planning needs both locally and nationally. It aims to tackle some of the difficulties with recruitment and retention and the inconsistency in competency and educational achievement across posts.

84. The Department of Health has also invested £6 million over three years (2001-04) to provide training and support for over 10,000 district nurses (one in four of all district nurses) in the principles and practice of palliative care. This programme is proving successful in helping district nurses support people with cancer—and also other conditions—at home for as long as possible during their illness and to die at home, if that is their choice and circumstances permit. A formal evaluation of this initiative is underway.

8B. GOVERNMENT POLICY INITIATIVES RELATED TO OTHER NATIONAL SERVICE FRAMEWORKS

— Palliative care policy for conditions other than cancer is set out in—or being developed for—the National Service Frameworks.

85. Although palliative care was first developed in response to the needs of patients with cancer, it is now a recognised and integral part of health service provision and the principles of palliative care apply equally across all conditions and in all settings. However, despite the excellent work being done, many patients continue to experience distressing symptoms.

— Chronic Disease Management

86. Work is currently underway to improve the management (including self-management) of chronic conditions. This work draws together work on a range of conditions, including some such as heart failure, which existing National Service Frameworks have highlighted. Chronic disease management resonates with approaches used to support many cancer patients. There is, however, some debate as to what extent cancer should be considered a "chronic disease". When someone is diagnosed with cancer the expectation is that treatment will be successful and that they will enjoy an active live—which is increasingly the case. Therefore, patients are living with an ongoing condition and—as the incidence of cancer increases with age and patients often have other conditions to cope with—cancer could be considered from this perspective.

87. Models under development for the care of patients with chronic conditions have potential application in relation to palliative care services. As patients with life-threatening conditions are helped to live longer there are benefits for patients in case management of complex conditions and careful self-management. Case management approaches, in particular, where new patient centred models are developed, can help to actively manage the care for those with the heaviest burden of illness.

88. The key aim of these developing models is to keep those with chronic conditions healthier for longer, in their own homes and to prevent deterioration in condition.

89. Nine Primary Care Trusts are working to implement the "Evercare model" (developed from approaches in the United States) for managing the care of the vulnerable elderly. This model centres on a nurse, with enhanced clinical skills, working with the rest of the primary healthcare team to co-ordinate and manage the care of an identified high-risk caseload. Care plans are developed with patients and their families/ carers to ensure proactive management of their conditions to prevent deterioration and to ensure they are cared for quickly in the most appropriate location when they do become ill.

90. Patients and carers have a central involvement in the delivery of care in this way through the development of care plans, coaching in self-management and early recognition of change in condition and discussion of end of life issues.

— Coronary Heart Disease National Service Framework (NSF) (published March 2000)

91. The National Service Framework for Coronary Heart Disease aims to raise standards of care for patients with all aspects of heart disease. Work is concentrating now on heart failure, which affects large and growing numbers of people as the population ages and as more people survive heart attacks but are left with damaged heart muscle. Heart failure often has a poor prognosis, with survival rates worse than for breast and prostate cancer. There is also evidence that people with heart failure have a worse quality of life than people with other common medical conditions.

92. The NSF highlights the role of palliative care for these patients. This point is followed up in the Priorities and Planning Framework for 2003-06, which requires the NHS to improve the management of patients with heart failure in line with the NICE clinical guideline published in July 2003. That guideline notes that there is only anecdotal evidence that palliative care improves the care of patients with heart failure specifically, reflecting the fact that there has to date been little such provision. However, it recommends that the palliative needs of patients and carers should be identified, assessed and managed at the earliest opportunity, and that they should have access to professionals with palliative care skills within the heart failure team.

— Renal Services NSF (Part 1 published 2004; Part 2 under development)

93. The risk of renal failure increases with age. In 2002, over half of all new patients starting dialysis treatment were over 65 years of age. Many of these people also had multiple co-morbidities and their prognosis for survival on dialysis was poor. The Renal External Reference Group is expected to deliver its advice on end-of-life care to the Department of Health soon. This will support work to develop Part Two of the National Service Framework for Renal Services which is likely include a standard on end-of-life care for patients with established renal failure who are receiving treatment, and for those who choose to withdraw from, or not to initiate, dialysis treatment.

94. Renal services have in the past been concerned with prolonging life but there is increasing recognition that the skills and expertise of the palliative care team could be more broadly applied in the care of dying patients with kidney failure. This is a relatively new innovation in renal services, but the pattern of care is beginning to change. Preliminary data from the 2002 Renal Survey carried out by the UK Renal Registry show that ten of the 51 renal units surveyed in England had the support of a palliative care team; 206 patients are reported to have used palliative care facilities.

95. One such team was created at the Nottingham City Hospital in May 2001. It provides a care pathway for dying patients with established renal failure. In particular, it supports patients who chose not to commence dialysis treatment or who decide to withdraw from treatment completely. The team provides symptom control and emotional support to the patients and their families in both hospital and home settings. Since its establishment, the numbers of patients in the Nottingham area choosing not to have dialysis has increased from 13 in the first year to 33 in 2003-04.

— Older People NSF (Published 2001)

96. The NSF for Older People stresses the need for personal and professional behaviour to take account of dignity in end-of-life care. Supportive and palliative care should promote both physical and psycho-social well-being. All those providing health and social care, who have contact with older people with chronic conditions or who are approaching the end of their lives, should provide supportive and palliative care. Specific elements of this type of care were highlighted in the NSF and included information and communication, pain control, supportive rehabilitation, spiritual care, bereavement support.

97. To underpin the work of the Older People NSF, and as part of the Department of Health's centrally funded policy-related research programme, three research projects have been funded and have commenced:

1. "The palliative care needs of older people with heart failure and their families". The end-of-life care of a sample of people aged 60 and over with heart failure is being examined over a period of a year in various locations in England in order to determine their needs, how they change over the period studied and whether support services meet these needs. The finding will be used to help improve the quality of life of older people with heart failure at the end-of-life. The research is being conducted by the Sheffield Institute for Studies on ageing, Sheffield University—24 months from August 2003.

2. "Predicting the appropriate time for palliative care for older, non-cancer patients: a systematic review of the literature". This study will review the evidence on decision-making about transitions from curative to palliative care, examining the value—for defining palliative status and predicting survival—of tools designed to aid clinicians' decisions. The findings will contribute to improving end-of-life care processes. The research is being carried out by the School of Nursing, Midwifery and Health Visiting, Manchester University—12 months from September 2003.

3. "Impact on care of older people of the national education and support programme in palliative care for district and community nurses". This "before and after" project examines whether care received by older people (dying from conditions other than cancer) before the educational programme was implemented differed in carers' estimation from care received by older people who died after its implementation. The study uses a postal questionnaire to samples of bereaved relatives in England. Findings will help enhance education in palliative care. The research is being carried out by the Department of Palliative Care & Policy, King's College London—18 months from April 2003 (see paragraph 84).

— Long Term Conditions (LTC) (due to be published December 2004)

98. The National Service Framework (NSF) for Long Term Conditions (LTC) will focus on improving the standard of services for people with neurological conditions across England, by addressing their acute, rehabilitation and long term support needs. It will also consider some of the generic issues that are important to people living with other long term conditions. The NSF is currently planned for publication in December 2004 for implementation from April 2005.

99. Relatively few people with progressive neurological conditions, with the possible exception of motor neurone disease and CJD, currently access organised palliative care services appropriate to their needs. In 1993, only 4% of hospice admissions and 2% of bed days were attributable to neurological conditions.

100. Many of the symptoms experienced by people in later stages of neurological conditions are similar to those experienced by people with other conditions such as cancer, but a number of symptoms are unique to neurological conditions. A partnership between specialist neurological skills and palliative care skills is therefore required to meet their needs.

101. The timescale of neurological conditions is different from most forms of cancer. The long term nature of many neurological conditions means that people often require a much wider range of support, including all aspects of continuing care (physical, mental, social, spiritual), residential, respite and terminal care at appropriate times over a much longer time period than provided by traditional palliative care teams.

102. The full range of continuing and palliative care issues appropriate to people with neurological conditions will be considered during the development of the Long Term Conditions NSF.

— Children's Services (NSF still under development)

103. The Children's National Service Framework will develop new national standards across the NHS and social services for children. Most importantly, the Children's NSF will be about putting children and young people at the centre of their care, building services around their needs and maximising choice in how services are delivered. The particular needs of children with long term conditions and disabilities are being addressed and this includes consideration of how to improve palliative care services. We recognise that high quality palliative care can greatly enhance the quality of life for these children and their families.

104. Palliative care services for children are provided by a range of agencies across the NHS, the voluntary sector, social services and educational services. Palliative care is increasingly provided as an integral part of generic children's community nursing services, which are currently growing in number. In 2000 it is estimated that some 70% of the country had access to a children's community nurse.

105. In order to define a better understanding of the options available in providing palliative care for children with life-threatening illnesses (LTI), the Department of Health funded a £5 million programme of pilot projects which ran from March 1992 to March 1997. These projects explored and promoted different ways in which NHS services could care for children with life-threatening illnesses, and provide the support necessary for families. Initiatives came from the statutory and voluntary sectors, and included community home nursing services, voluntary respite and sitting services, counselling and psychological support as well as projects with children's hospices.

106. The subsequent evaluation "Evaluation of the Pilot Project Programme for Children with Life Threatening Illnesses", was completed in February 1998. This went on to offer guidance on the further development of services for children.

107. Detailed proposals followed, to build upon the work undertaken during the pilot project programme. The proposals were endorsed at a meeting of voluntary and interested organisations held in September 1998. The key features were that more specialist nursing teams, working within the NHS, should be created to support children with LTI and their families. This would include, as required, nursing care, emotional support and practical interventions. A high quality, seamless service was envisaged which facilitated the children and their families in gaining autonomy, choice and respect. The teams would involve other agencies and service providers, drawing on other professionals and voluntary support when necessary. Additional funding (£1.4 million for England) was provided, enabling eight Diana Children's Community Nursing teams.

108. The £45 million provided through the New Opportunities Fund (NOF) children's palliative care project programme (see paragraph 45), launched March 2002, will enhance provision with 134 projects, including 70 home-based palliative care teams, 39 awards to bereavement teams and 25 awards to children's hospices.

109. The Department is currently assisting the Association of Children's Hospices with a project to provide a Quality Assurance Package—hard copy and CD format. This is designed to enhance the quality of care provided by children's hospices' services and will be made available to all children's palliative care providers.

110. The Department has also funded the voluntary organisation Action for Children with Life Threatening Illnesses (ACT) to further research, develop and publish care pathways for children's palliative care, and to publish and disseminate specialist literature and research findings on paediatric palliative care, also the ACT Guide to the Assessment of Children with Life-threatening and Terminal Conditions.

111. The National Institute for Clinical Excellence has commissioned the National Collaborating Centre for Cancer to develop service guidance on child and adolescent cancer for use in the NHS in England and Wales. The guidance will provide recommendations for service provision that are based on the best available evidence. This will include palliative care and bereavement support. The Institute's service guidance will support the implementation of the NHS Cancer Plan. The service guidance, clinical guidelines and technology appraisals published by the Institute after the Cancer Plan was issued will have the effect of updating the plan. The development of the service guidance recommendations began last summer. Guidance to be completed February 2005.

112. Cancer is responsible for the vast majority of adult demand for hospice services. This is not so with children where recovery is more likely and hospice care in the terminal stages is less in demand. Every year in the UK, approximately 1,500 new cancer cases in children under 15 years are diagnosed. Overall survival rate for children with cancer is approximately 70%.

8C. GOVERNMENT POLICY INITIATIVES RELATED TO END OF LIFE CARE

"Building on the Best"

The Choice initiative: Building on the Best

113. Building on the Best: Choice, Responsiveness and Equity in the NHS drew out the main themes that emerged from the Department of Health's consultation on what changes would do the most to improve the experience of healthcare for patients, users and carers. The consultation took place over the autumn of 2003 and received over 750 replies—the largest response to a consultation since the NHS Plan was published. The Department received responses from patients and the public, NHS staff and organisations, voluntary organisations and professional bodies. Running through all the replies were powerful messages about people's experience of healthcare:

— Health needs are personal so services should be shaped around people's needs instead of being expected to fit into the system;

— People want the right information, at the right time, as well suited to their personal needs as possible to make decisions and choices about their care and treatment;

— Everyone, not just the affluent middle classes, want the opportunity to share in decisions about their health and healthcare.

114. Some of the most powerful consultation responses came from people who were distressed and felt badly let down over the experience of relatives close to the end of life. Too few people are benefiting from the strong tradition and experience of end of life care within cancer and HIV/AIDS services.

Taking forward Building on the Best

115. The Command Paper arising from the recent consultation on Choice, Responsiveness and Equity in the NHS, "Building on the Best", stated that, building on work already in hand to develop specialist palliative care services for cancer, we will be working in partnership with voluntary and statutory bodies to build on current initiatives and extend them over time to all adult patients nearing the end of life. The project will, therefore, benefit all patients, not just those with cancer.

116. On 26 December 2003, the Secretary of State for Health announced an additional £12 million funding for end of life care. The funding to support this initiative will be available from April 2004 (£4 million per year for three years) and will enable so much of the good work being done in palliative care for cancer patients to be extended and built on. Working with key stakeholders, the national clinical directors, led by the National Cancer Director and the National Director for Older People's Services, and the Department of Health will be taking forward preparatory work over the next few weeks.

117. The extra funding will specifically help support implementation of the Macmillan Gold Standards Framework, South Lancashire and Cumbria Cancer Network's Preferred Place of Care and Marie Curie's Liverpool Care Pathway for the Dying tools. These tools can be adapted to meet the needs of a wide range of conditions and we are already working with the charities through the Cancer Services Collaborative to develop a national process to enable both initiatives to be implemented in a managed, staged and sustained way. This additional £12 million will provide a major boost to this work.

Gold Standards Framework

Liverpool Care Pathway for the Dying

Preferred Place of Care