Select Committee on Health Written Evidence


APPENDIX 39

Memorandum by the National Council for Hospice and Specialist Palliative Care Services (PC 56)

1.  THE NATIONAL COUNCIL FOR HOSPICE AND SPECIALIST PALLIATIVE CARE SERVICES

  The National Council for Hospice and Specialist Palliative Care Services (National Council) was established in 1991 to be the umbrella organisation for hospice and palliative care services across the voluntary and NHS sectors in England, Wales and Northern Ireland. It was set up with the explicit encouragement of Government in the expectation that it would provide a single national voice for palliative care. It is a company limited by guarantee and registered as a charity.

  Its principal aims are:

    —  To represent all the National Council's stakeholders as an umbrella body.

    —  To influence government and other policy makers in health and social care across the statutory and voluntary sectors.

    —  To encourage the development and dissemination of good practice in palliative care.

  As an umbrella organisation the National Council is a collaborative body being born out of the following organisations and interests:

    —  The national charities in the field: Macmillan Cancer Relief, Marie Curie Cancer Care, Sue Ryder Care and Help the Hospices.

    —  The principal professional associations: Association for Palliative Medicine, Royal College of Nursing, Association for Hospice and Specialist Palliative Care Social Workers, Association for Hospice Management.

    —  The independent voluntary hospices.

    —  The NHS.

    —  Elected Area Representatives from the Regions of England, from Wales and Northern Ireland.

    —  Subscribers to the National Council.

  The current membership of the Board of Trustees of the National Council contains representatives from all these elements.

  One of the primary values of the National Council since its inception has been its commitment and capacity to take a broad view of the need for and provision of hospice and specialist palliative care services across all providing agencies, rather than to focus on the interests of any particular set of its stakeholders. Its authority and reputation are derived from its ability to produce objective and independent analysis of the issues affecting palliative care. Over recent years its agenda has widened to include all palliative care services and not just the specialist services. It has also moved to include services needed by all disease and patient groups and not just those needed by people with cancer.

2.  NATIONAL POLICY OBJECTIVES FOR PALLIATIVE CARE

  Following publication of the NHS Cancer Plan in 2000 the National Council developed a strategic plan for what it considered should be the future direction of palliative care. In particular it set out a range of policy objectives the achievement of which are crucial to the provision of high quality palliative care for all those who need it. It is against those objectives that current service provision and current government policy need to be assessed.

  The objectives are:

    Fair access:  To ensure that all patients with palliative care needs, together with their carers, have equitable access to a range of palliative care services appropriate to those needs.

    Timeliness:  To ensure that all patients with palliative care needs, together with their carers, have equitable access to appropriate palliative care services when they need them and for as long as they need them.

    Effective delivery:  To ensure that all patients have their physical symptoms managed, throughout their illness, to a degree that is acceptable to them, and achievable within current palliative care knowledge.

    To ensure that all patients receive psychological, social and spiritual support appropriate to their assessed needs, throughout their illness.

    Patient empowerment:  To ensure that all patients (and carers subject to the patient's agreement) receive all the information they seek concerning diagnosis, progress of the disease, care and treatment options and support services thus facilitating informed patient and carer choice.

    Carer experience:  To ensure that all carers and those others who matter to the patient receive psychological, spiritual and social or practical support which is responsive to their perceptions and needs, throughout the patient's illness and into bereavement.

    Communication:  To ensure that all health and social care professionals who are involved in the care of patients and those that matter to them are enabled to communicate with each other in a fashion which is timely and effective thus facilitating continuity of care and support for patients and their carers.

    Efficiency:  To maximise the cost-effectiveness of the use of resources available for meeting patient and carer palliative care needs.

    Health outcomes:  To improve the quality of life remaining for patients.

    To sustain quality of life for carers throughout the patient's illness and into bereavement.

    To reduce psychological morbidity in carers associated with their experience of the patient's illness and death.

3.  DEFINITIONS OF PALLIATIVE CARE

  3.1 In its inquiry into palliative care it will be important for the Committee to be clear about what is meant by palliative care in the context of contemporary Government policy—in particular to be able to differentiate between supportive and palliative care. It will not be sufficient merely to pick up and employ the WHO definition of palliative care.

  In 2001-02 the National Council carried out an extensive consultation on whether it was necessary to review the then current definitions of palliative care in the light of the Department of Health's proposed development of a supportive care strategy for cancer services. The outcome was that such a review was necessary and a broad consensus emerged. The following definitions and concepts have very largely been incorporated by NICE in its Guidance on Improving Supportive and Palliative Care for Adults with Cancer. The National Council believes that these definitions and concepts are also applicable to all other disease or patient groups.

3.2  A definition of supportive care

  Supportive care is that which helps the patient and their family to 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.

3.3  A definition of palliative care

  Palliative care is the active holistic care of patients with advanced, progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is the 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.

  Palliative care:

    —  Affirms life and regards dying as a normal process.

    —  Provides relief from pain and other symptoms.

    —  Integrates the psychological and spiritual aspects of patient care.

    —  Offers a support system to help patients live as actively as possible until death.

    —  Offers a support system to help the family cope during the patient's illness and in their own bereavement.

3.4  Relationship between supportive care and palliative care

  The definition for supportive care is very broad and includes all aspects of patient and family care other than the processes of diagnosis and treatment that have curative aims. It does therefore cover palliative care. The principles underpinning supportive and palliative care are broadly the same and the domains of patient and family need are also very similar. The delivery of supportive and palliative care is undertaken by two distinct categories of health and social care professionals:

    —  The patient and family's usual professional carers.

    —  Those providing specialist contributions to the supportive and palliative care of the patient and family. They include:

        Specialist palliative care services

        Specialist psychological services

        Rehabilitation services

        Information, advice and resource services

        Social care services

        Specialist pain services

        Palliative interventions eg palliative radiotherapy, palliative surgery

4.  DEFINITION OF THE CORE SERVICE COMPONENTS OF PALLIATIVE CARE

4.1  General Palliative Care Services

  General palliative care services are provided by the usual professional carers of the patient and family with low to moderate complexity of palliative care need.

  A general palliative care service comprises a health and social care workforce in which all the patient and family's usual professional carers provide palliative care as a vital and integral part of their routine clinical practice. They should be able to:

    —  Assess the care needs of each patient and their families across the domains of physical, psychological, social, spiritual and information needs.

    —  Meet those needs within the limits of their knowledge, skills, competence.

    —  Know when to seek advice from or refer to specialist palliative care services.

  In order to meet those requirements the health and social care workforce will need appropriate training and guidance including:

    —  Education and training in the basic principles and practice of palliative care including symptom management.

    —  Skills in assessing the palliative care needs of patients and families.

    —  Training in communication skills.

    —  Guidance on when to refer to specialist palliative care services.

4.2  Specialist Palliative Care Services

  These services are provided by specialist multidisciplinary palliative care teams and include:

    —  Assessment, advice and care for patients and families in all care settings.

    —  Specialist in-patient facilities (in hospices or hospitals) for patients who benefit from the continuous support of specialist palliative care team.

    —  Intensive co-ordinated home support for patients with complex needs who wish to stay at home.

    —  Day care facilities that offer a range of opportunities for assessment and review of patients' needs and enable the provision of physical, psychological and social interventions within a context of social interaction, support and friendship.

    —  Bereavement support services.

    —  Education and training in palliative care.

  The recommended composition of the specialist team has been set out in the NICE Guidance on Improving Supportive and Palliative Care.

5.  CURRENT PROVISION OF SPECIALIST PALLIATIVE CARE SERVICES

5.1  In-patient Services

  There are 172 specialist in-patient units in England with 2,637 beds. Of those, 130 are voluntary sector hospices with 2,147 beds and 42 are NHS managed units with 490 beds. The average ratio of beds to population is around 51 per million although this varies widely in the 34 Cancer Networks from around 30 per million to over 70. It is likely that investment from the additional £50 million will push the England average ratio to 52/53 per million.

5.2  Community Services

  There are 264 home care services about half of which are provided by the NHS and half by the voluntary sector. Many of these are nurse only teams of specialists in palliative care. There are in addition 81 hospice at home type schemes. There are many different models varying from rapid response teams offering a high level of multi-professional support to teams offering nursing care and/or volunteer support for extensive periods of the day or night. The Palliative Care Survey 1999 found that the ratio of community nurse specialists in palliative care was around 21 per million population across England. That is expected to rise to 22/23 after all the investment has been made from the extra £50 million allocation.

  There are also 211 day care services most of which are provided by the voluntary sector. The spectrum of provision varies from mainly social care models to those providing a range of clinical palliative care interventions. In 1999 these services provided an average ratio of around 13,000 day care places per year per million population.

5.3  Hospital-based Services

  There are 273 services of which 53 are nurse only teams and 220 having specialist palliative medicine as well as specialist palliative nursing input. Many of these support teams have access to a wider range of professional expertise. Nearly all of these teams are NHS managed.

5.4  Out Patient Services

  There are estimated to be around 240 specialist services that provide or participate in out patient clinics. Many of these clinics are held in association with other clinics eg oncology.

5.5  Bereavement Support Services

  There are 265 services listed in the 2003 Directory of Hospice and Palliative Care Services. There is wide variation in the models of service provided. There are thought to be many other bereavement support services that are not connected to hospice and specialist palliative care services.

5.6  Education and Training Services

  It is generally recognised that it is a part of every specialist's role in palliative care to provide informal education and training for non-specialist colleagues as they work together in the care of individual patients and families. Most specialist services also contribute to formal education programmes which may comprise any or all of the following:

    a.  A continuing education programme which is designed to enhance the skills and knowledge in palliative care of health and social care professionals in hospitals or more generally in the community.

    b.  The basic education of doctors, nurses and other professions.

    c.  The training and continuing education of specialists in palliative care.

6.  ACCESS TO SPECIALIST PALLIATIVE CARE SERVICES

  The data in this section is derived from the national Minimum Data Set Collection for services in England, Wales and Northern Ireland for the year 2002-03. This collection is undertaken by the National Council on an annual basis.

6.1  In-patient Services

    —  95.1% of all patients have a diagnosis of cancer

    —  68% of patients are aged 65 and over

    —  50.7% of admissions end in death

    —  43% of admissions end in discharge to home

    —  The mean length of stay is 12.9 days—this varies from 12 days in the smaller units to 14.6 days in the larger units

    —  70% of stays are for 14 days or less

    —  Average bed occupancy is around 75%

    —  There were around 51,000 admissions of which 37,000 were in respect of new patients

6.2  Day Care Services

    —  93.8% of all patients have a diagnosis of cancer

    —  64% of patients are aged 65 and over

    —  The average length of a series of attendances is 167 days—this varies from 53 days to 509 days per day care unit

    —  15% of all patients have been attending for more than a year

    —  The percentage use of day care places is 62%

    —  There were around 31,000 patients attending day care of which 20,000 were new patients

6.3  Home Care services

    —  95.2% of all patients have a diagnosis of cancer

    —  68% of patients are aged 65 and over

    —  The average number of visits per patient is 5.3—this varies from 1 to 18 per home care service

    —  The length of a series of visits is less than 2 weeks in 21% of cases and less than 3 months in 64% of cases

    —  79% of all visits were made by a clinical nurse specialist, 11% by other nurses and 2% by doctors

    —  44% of patients in receipt of a home care service died at home, 21% in a hospice and 28% in hospital

    —  There were around 130,000 patients receiving home care of which 92,000 were new patients

6.4  Hospital Support

    —  92.1% of all patients have a diagnosis of cancer

    —  68% of all patients are aged 65 and over

    —  The average number of contacts per patient is 4

    —  83% of contacts with patients is by a clinical nurse specialist and 14% by a doctor

    —  19% of patients had only one contact with the team

    —  89% of a series of contacts was for less than 1 month

    —  Over 40% of services do not have a doctor in the team

    —  There were around 120,000 patients who had at least one contact with a hospital support team

6.5  Bereavement Services

    —  67% of contacts are by staff with the client as an individual

    —  23% of contacts are by staff with clients in a group

    —  46% of contacts are with Social Workers or Counsellors, 10% with Clinical Nurse Specialists and 32% with volunteers

6.6  Out Patient Clinics

    —  91% of all patients seen have a diagnosis of cancer

    —  55% of patients are aged 65 and over

    —  About half of the patients were being seen for the first time

    —  32% of clinics are consultant led and 12% nurse led

    —  29% of clinics are for lymphoedema only

6.7  All Patients

  It is not known how many individual patients have access to at least one specialist palliative care service during any one year since there is no data available that enables individual patients to be tracked through different services. However, since it is quite common for patients to access more than one service, the number is likely to be in excess of 130,000 which is the estimated number of patients who have access to home care services. Of these around 90,000 are discharged in the year. Of these, 62% of discharges are due to death ie around 57,000. In 2001 there were 143,234 deaths in England, Wales and Northern Ireland where cancer was the principal cause. It would therefore appear that at least 40% of those who die from cancer have access to at least one specialist service in the last year of life. The actual percentage is likely to be higher than that.

  Since cancer is the principal cause of death in only 25% of cases, there are around 430,000 deaths from other causes. In the course of a study for the London Regional Strategy Group for Palliative Care Professor Irene Higginson estimated that about two thirds of people dying from causes other than cancer would benefit from some palliative care intervention. The estimate for England, Wales and Northern Ireland would therefore be around 280,000 who might benefit in the last year of life.

  Only 5% of the 130,000 patients seen by specialist community teams have non-cancer diagnoses ie 6,500. Of these around 4,500 are discharged in the year and 62% of these discharges will be due to death ie around 2,800. It would therefore appear that as few as 1% of those who might benefit from some palliative care have access to the specialist palliative care services.

6.8  Principal Conclusions

    —  The prevalence of symptoms in people with a non-cancer diagnosis has many similarities to that for people with cancer. But only 1% of those with a non cancer diagnosis have access to specialist community teams in the last year of life compared with 40% of those with cancer. It is therefore highly probable that such access needs to be considerably increased.

    —  Those dying from diseases other than cancer suffer gross inequalities in their access to specialist palliative care services.

    —  There is no evidence to suggest that a specific percentage of people in the last year of life need access to specialist palliative care services.

    —  Around 83% of all deaths are of people aged 65 and over and it might reasonably be expected that a similar percentage of people of that age would gain access to specialist palliative care services. However, the percentages range from under 60 to 68%, well under 83%. It would be important to understand the reasons for that in order to be able to discount any possibility of age discrimination.

7.  DISTRIBUTION OF SPECIALIST SERVICES

7.1  The Palliative Care Survey 1999

  The Palliative Care Survey 1999 revealed that volumes of service provision assessed on a regional basis diverged widely in respect of all core services. It was also concluded that the regional aggregate data disguised even greater divergence between health authority and catchment populations for specific services. The principal findings were as follows:

    —  The average ratio was 51 beds per million population but regionally that varied between 34 and 62.

    —  The number of day care places per year per million population was 13,000 but regionally varied from 7,100 to 16,500.

    —  The number of community based clinical nurse specialists per million population was 21 but regionally varied from 15 to 30.

  These ratios may have changed since 1999 but not significantly.

7.2  National Norms for Service Provision?

  It is sometimes suggested that national norms of provision are developed. There is however a lack of evidence to support specified levels of service provision such as the number of beds required per million population. Services need to be provided flexibly around the needs of patients and that can be achieved in more than one way. Levels and nature of provision will depend on a number of factors including local demography (age structure of the population, relative socio/economic deprivation, ethnicity), the annual incidence of deaths and the views of local service users.

7.3  Local Population-Based Needs Assessment

  Cancer Networks are beginning to undertake Network wide needs assessments for palliative care based on a methodology developed by the National Council. That methodology is based on the hypothesis that the need for palliative care in specific populations is influenced primarily by the prevalence of life-threatening illness and mortality rates in respect of those illnesses. Given that most palliative care will be needed in the last year of life, the ratio of deaths to population is likely to be the most important indicator of palliative care need in a population. There is one further important factor and that is relative economic and social deprivation since there is a consensus among health and social care professionals that in the most deprived communities more resources are required to enable good care in the community. There is also some evidence that twice the resources are needed in the most deprived areas compared with the least deprived areas.

  A number of common findings are emerging from those Networks that have begun to carry out needs assessments.

    —  There is normally significant variation in need across a Network population. There can be as much as 75% difference in need per head of population between one PCT population and another.

    —  Availability of and access to services does not normally reflect the differential needs of the different populations within Networks. In some Networks there is an inverse relationship between need and access.

    —  Catchment areas for specific specialist teams/services appear historically arbitrary eg well resourced teams have small catchment areas and less well resourced teams have large catchment areas.

    —  Access to services by people with diagnoses other than cancer does not reflect need.

7.3  Development of an Index of Palliative Care Need for Cancer Networks

  The National Council has developed an Index of comparative palliative care need for the 34 Cancer Networks based on the methodology referred to in the paragraph above. This shows that there is a variation in need per head of population of around 60% between those with most need and those with least. Further work is being undertaken to collect data about service provision in each Network and to map that against need. This is already providing some important preliminary findings eg the Network with the highest estimated need has one of the lowest ratios of beds to population. Conversely, two of the Networks with the lowest need have two of the highest ratios of beds to population.

7.4  Principal conclusions

    —  The distribution of specialist services both within Cancer Networks and between them is often random when compared with assessed need.

    —  Accordingly access to services by different populations is also often random.

    —  There is considerable inequality of access to services across the country.

    —  Cancer Networks together with local providers and commissioners will not find it easy to lessen these inequalities.

    —  Cancer Networks would benefit from a continuing support and development programme for their palliative care networks with the aim of sharing solutions to the problem of ensuring equitable access.

    —  The historically random growth and distribution of services is in respect of both voluntary and NHS services.

    —  There is a need for all Cancer Networks to undertake population based needs assessment for palliative care for all disease and patient groups and to employ a common methodology for doing so.

5.  QUALITY OF SERVICES

8.1  Definition of quality of care

  Quality of care is a much used and often abused term. It is therefore important to define what meaning can be given to the term in the context of palliative care.

  The quality of palliative care services will depend firstly on the human, physical and financial resources which provide the care ie the structure of services. Secondly it will depend on the activities that go on with and between health and social care professionals and their patients/clients ie the process of providing care. Together, structure and process provide the conditions for the outcomes of care ie the results of the health and social care interventions.

  Palliative care as defined in Section 3 above is about the need to assess with the patient and carers what their palliative care needs are across the domains of physical, psychological, social and spiritual care. The quality of palliative care is defined as the degree to which the needs of individual patients and their carers are identified and met. In assessment of the quality of services there is accordingly no substitute but to seek the views of patients/carers about their care regularly and systematically.

8.2  The NICE Guidance on improving supportive and palliative care for adults with cancer (The NICE Guidance)

  The NICE Guidance is based upon a frank assessment of the deficiencies in the supportive and palliative care delivered for some patients and their carers. The recommendations in the Guidance are designed to eliminate those deficiencies. The National Council gives firm support to the Guidance recommendations. It does however need to be understood that the recommendations are in respect of structure and process. The recommendations when implemented are the necessary conditions for good outcomes for patients but they are not guarantees of good outcomes since in the last analysis those are dependent upon the actions of both health and social care professionals and the patients/carers themselves. It is for that reason that it is important to survey regularly and systematically patient/carer views about their care.

8.3  Development of national standards for palliative care

  The National Council is involved in and supports the development of precise national standards from the NICE Guidance recommendations. It supports the national policy that such standards should apply to the services provided by all sectors ie NHS, voluntary and independent providers and across all care settings ie in hospitals, hospices, in the community and in care homes. The establishment of the Commission for Health Care Audit and Inspection in April 2004 will facilitate implementation of this policy.

8.4  Inspection, Peer review, Organisational Development

  At present, and in the future, providers of specialist palliative care find themselves subject to as many as three different source of inspection or review:

    —  The three year cyclical review by Cancer Services Peer Review.

    —  Inspections by the National Care Standards Commission (and its successor body CHAI).

    —  Organisational audit and development by independent bodies such as the Health Quality Service (HQS) and Quality by Peer Review (QPR).

  There would appear to be much future benefit in the organisations concerned working together to share inspection/review information in order to minimise the occurrence of multiple inspections/reviews during the same year.

8.5  Principal conclusions

    —  The true test of the quality of palliative care is what patients and carers think about their care.

    —  There may be benefit in the development of a standard survey instrument for seeking patient and carer views.

    —  National standards for palliative care should apply to services provided by all sectors—NHS, voluntary and independent.

    —  There should be close collaboration between those bodies that are engaged in the review, inspection and organisational audit and development of hospice and palliative care services.

6.  PATIENT CHOICE

9.1  Place of care and death

  There is substantial evidence to show that most people would prefer to be cared for at home and to die at home. However, across the country as a whole, most people die in places other than their home.

  In a joint publication of the National Council and the Cicely Saunders Foundation (July 2003) entitled Priorities and Preferences for end of life care In England, Wales and Scotland the following findings were reported from a national telephone survey.

Table

PREFERENCES VERSUS REALITY: WHERE PATIENTS WANT TO BE CARED FOR AND WHERE THEY ACTUALLY DIE


Place of death
Preferred place of death
Actual place of death—
all causes
Actual place of death—
cancer principal cause

Home
56%
20%
25%
Hospice
24%
4%
17%
Hospital
11%
56%
47%
Care Home
4%
20%
12%


  There is clearly an inverse relationship between where people say they want to spend the last period of their lives and where they do. There is however some evidence to indicate that as some people near the last phase of life that they may change their mind about preferred place of care and death.

9.2  Achievement of more choice about place of care and death

  The continual assessment of patient and carer palliative care needs should include a process to identify and keep up to date patient preferences about place of care and death. The achievement of more patient choice is likely to require greater provision of resources in the community to enable people to remain at home if that is their wish. It is often the lack of sufficient support that prevents people from being cared for at home. The additional resources required may include the Marie Curie Nursing Service, hospice at home type services and social services.

9.3  Principal conclusions

    —  Patient preferences for place of care and death need to be identified and recorded.

    —  Cancer Networks with their local PCTs need to assess what additional services/resources are required.

    —  PCTs will need to commission appropriate levels of service to ensure that patient preferences are met.

    —  This may involve a transfer of resources from hospitals to community.

7.  FUNDING SPECIALIST PALLIATIVE CARE SERVICES

10.1  Current overview

  As described in section 5 above the voluntary sector hospices provide most of the specialist beds, nearly all the day care, about half of the community teams as well as a range of other services including hospice at home type schemes and education and training. Prior to the investment of the extra £50 million for specialist palliative care that was made available for 2003-04, the average contribution by the NHS to the annual running costs of the voluntary hospices was a little below 30%. It may now be somewhat higher as a result of Cancer Network decisions to provide a "more realistic contribution to the costs of providing agreed services." However, this approach to funding hospices dates from the period when the provision of hospice and specialist palliative care services appeared to be, from the perspective of Government and local NHS policy, as an optional add-on service. In the last few years that has changed in that palliative care is now regarded by the Department of Health and the NHS as an essential element of mainstream care of NHS patients. The NICE Guidance on Improving Supportive and Palliative Care for Adults with Cancer is the latest expression of that. This fundamental change has resulted in the voluntary hospices, in much of what they currently do, providing services for NHS patients as a quasi contractor to the NHS rather than providing services to their own patients as a totally independent organisation.

10.2  Charity Commission guidance and HM Treasury Cross Cutting Review

  The Charity Commission advises that charities that provide for public bodies what are ostensibly public services that otherwise those public bodies would be obliged to provide themselves, should be recompensed with the full cost of providing such services.

  The HM Treasury Cross Cutting Review that reported in 2002 on the future relationship of public bodies with the voluntary and community sector also recommended that where charities provided services for public bodies they should be able to recover the full costs of providing such services including overhead costs. The proposed deadline for achieving that was 2005-06.

  The overall policy and future implementation of it is therefore clear. When a voluntary hospice is commissioned by a PCT to provide specific services the PCT should pay the full costs of delivering that service.

10.3  Reform of mechanisms governing NHS funding flows—payment by results

  There is agreement within the Department of Health's National Partnership Group for Palliative Care that these reforms should eventually apply to the provision of specialist palliative care services whether delivered by the NHS or by voluntary hospices. The realistic date for developing and implementing a national tariff of standard prices for provision of specialist palliative care services is probably 2007-08. However, considerable work has already been undertaken in developing reference costs and these could and should provide the basis for developing and implementing an interim tariff from 2005-/06.

10.4  Principal conclusions

    —  A standard service specification would need to be developed and incorporated into a standard service level agreement on a 3 year rolling basis.

    —  Voluntary hospices would be free to provide services to an enhanced specification at their own additional cost from charitable sources.

    —  They would also be free to provide other services that were not commissioned by the NHS but would need to fund those 100% from charitable sources.

    —  NHS commissioners would need to specify exactly what services and in what volume they wanted a voluntary hospice to provide.

    —  The standard national tariff would be applicable also to NHS managed services.

    —  These proposals represent a fundamental shift in the approach to the funding of services provided by the voluntary sector for the NHS—from part funding of institutions to payment in full of services commissioned by PCTs for NHS patients.

    —  The additional cost to the NHS of paying in full for services currently subsidised from charitable sources is estimated to be in excess of £100 million. The exact additional cost would depend on what services in what volume PCTs decided to commission for their populations.

    —  Given the pressure on PCT budgets across the country it is unlikely that it would be seen as being a good value investment to pay considerably more for receiving the same level of service. It is therefore probable that PCTs would need some additional funding to help them move from the current way of funding voluntary hospices to payment by results.

8.  WORKFORCE ISSUES

11.1  Education and training needs of non-specialists in palliative care

  The NICE Guidance and the definition of general palliative care services makes it clear that all health and social care professionals that have responsibility for the assessment of individual patient and carer need should be able to:

    —  Assess the care needs across the domains of physical, psychological, social, spiritual and information needs.

    —  Meet those needs within the limit of their knowledge, skills and competence.

    —  Know when to seek advice from or refer to specialist palliative care services.

  In order for this to be achieved each practitioner will need to have an appropriate level of knowledge of the theory and practice of palliative care. Such knowledge and skills will need to be obtained in the basic education programme for each professional and to be topped up according to individual need throughout their career.

  There are several major initiatives designed to address these education and training needs:

    —  The programme for community nurse training in palliative care kick-started through the allocation of a central budget of £6 million spread over 3 years and now continued in many networks through use of part of the extra £50 million for specialist palliative care.

    —  The communication skills programme launched as part of the NICE Guidance implementation.

    —  The roll out of the Liverpool Care Pathway for Care of the Dying Patient (LCP).

    —  The roll out of the Gold Standards Framework for Primary Care (GSF).

    —  The allocation of £12 million to improve care of the dying.

  Important though these initiatives are there remain some large challenges:

    —  To achieve greater prominence of palliative care in all health and social care professionals' basic training.

    —  To obtain a national agreement about what precisely health and social care professionals need to know about and be able to do in palliative care—the possible development of a national curriculum.

    —  To ensure that the process of Continuous Professional Development (CPD) can identify individual practitioners who need further training and education in palliative care and to ensure that they receive it.

    —  To ensure that Workforce Development Confederations together with Cancer Networks and other managed clinical networks can consider and implement local training programmes that can deliver a national curriculum.

11.2  The specialist palliative care workforce

  Remarkably little is known about the specialist palliative care workforce apart from specialist medical staff. There is a need to collect data about the workforce that would help in future workforce planning. It would include the following:

    —  How many specialist staff there are currently.

    —  What their qualifications are.

    —  When they were appointed.

    —  How old they are.

    —  What posts they hold.

11.3  Current and future demand for specialist staff

  The investment of the extra £50 million for specialist palliative care services has created a demand for 70 extra consultants in palliative medicine and 160 clinical nurse specialists. It is known that there are currently 100 consultant vacancies and that the likely future supply of doctors who have successfully completed the SPR training programme will not be sufficient to meet demand. It is not yet known whether there will be sufficient numbers of qualified nurses to fill the extra CNS posts.

  In addition as Networks compare the membership of their specialist teams with the NICE Guidance recommendations in respect of the other professions eg physiotherapists, OTs, social workers and identify deficiencies, a further demand for specialist staff in these professions will be created.

  It would appear that there is a need to establish nationally what additional specialist staff may be needed in order for all specialist palliative care teams to comply with the NICE Guidance. To this would need to be added the numbers of specialists who are due to retire or who may otherwise leave over the next few years. It is only through the availability of this kind of data that it will be possible to develop a plan to ensure that current and future demand can be satisfied.

11.4  Coping with inability to recruit specialist staff

  There is an urgent need for solutions to be found, temporary or otherwise, when recruitment to advertised posts appears not to be possible. Some potential solutions are:

    —  Sharing of specialist staff across providers.

    —  Merging of specialist teams across providers.

    —  Increasing the number of staff grade medical staff.

    —  Appointment of nurse consultants.

    —  Appointment of GPs with special interest in palliative care.

    —  Development of programmes to grow one's own specialist staff eg clinical nurse specialists.

    —  Development of tele-medicine.

  It will be important to collect and share knowledge of what practice actually works best.

11.5  Principal conclusions

    —  There is a need for a national programme the aim of which is to ensure that all health and social care professionals know how to assess palliative care needs.

    —  Consideration should be given to including in such a programme the development of a national curriculum for palliative care and the development of a standard individual patient needs assessment tool.

    —  There is a need for a national survey of current specialist staff resources and the likely future demand for such staff taking into account natural wastage and the requirements of the NICE Guidance.

    —  The development of guidance on solutions to the problems of non-recruitment may be useful.

9.  WORKING IN PARTNERSHIPS

12.1  Cancer networks

  The NICE Guidance recommends that SHAs and Local Health Boards, working through Cancer Networks, should ensure that structures and processes are in place to plan and review supportive and palliative care services. All relevant stakeholders in the provision and commissioning of such services (health, social care and voluntary) should be included.

  As far as palliative care is concerned the structures that have been developed have come to be called palliative care networks. The Cancer Network management is responsible for providing them with management support. This is beginning to work well in many Networks with some having dedicated management support. In the larger Networks there is a two tier structure involving a Network Palliative Care Strategy Group with several locality groups feeding into that. This enables greater numbers of stakeholders to be involved in discussions on planning and operational matters.

  When these palliative care networks were first established within Cancer Networks there was some concern that they would be inhibited from consideration of services for people with diagnoses other than cancer. Some of that concern does remain but there is now growing evidence particularly in those Networks that have undertaken palliative care needs assessment that the agenda has been widened to include non-cancer.

12.2  National Partnership Group for palliative care

  The National Council very much welcomed the establishment of the National Partnership Group by the Department of Health. It brings together all the key players at national level from both the NHS, the Department and from the voluntary sector. It has initiated several important streams of activity:

    —  Consideration and approval and monitoring of each Network's investment plans for the £50 million extra for specialist palliative care services.

    —  Development of reference cost for specialist palliative care and the development of national tariffs of prices for provision of services.

    —  Consideration of the rights and responsibilities of the various stakeholders in working in partnership at Cancer Network and more local levels and the implications of the Government's Compact with the voluntary and community sector.

    —  Consideration of the implications of Agenda for Change on voluntary hospices.

12.3  Principal conclusions

    —  The palliative care networks within the Cancer Network structure are beginning to work well and to cover the whole palliative care agenda for all disease and patient groups.

    —  In some Networks there is a need to make available more management support for palliative care.

    —  There is a continuing need for a support and development programme for palliative care networks to exchange experience, learn from each other and identify issues where national action may be required (This programme is a major part of the National Council's current activities).

    —  The National Partnership Group has provide a much needed forum for national discussion and identification of matters that require national work and action.

10.  ASSESSMENT OF IMPACT OF GOVERNMENT POLICY

13.1  Background

  The principal development in Government policy over the last few years has been its recognition that all NHS patients and their carers should receive palliative care appropriate to their individual needs. In other words palliative care has become part of mainstream health care. This in itself has been a major step forward and its importance should not be under-estimated.

  The publication of the NHS Cancer Plan contained further important commitments:

    "The care of dying patients must improve to the level of the best."

    "All patients should have access to the specialist palliative care advice and services that they need."

    "By 2004 the NHS will invest an extra £50 million to end inequalities in access to specialist palliative care services and to enable the NHS to make a realistic contribution to the cost hospices incur in providing agreed levels of service."

    "The allocation of £6 million for community nurse training in palliative care."

  The Cancer Plan also included the commitment to develop a supportive care strategy and to commission NICE to develop guidelines for supportive and palliative care.

  All these commitments have been welcomed by the National Council in that the overall policy of the Government appeared to be moving in the right direction.

13.2  The extra £50 million

  This commitment took longer to fulfil than originally expected but the establishment of the central budget in January 2003 was a welcome step forward as was the setting up of the National Partnership Group and its role of considering each Network's investment plans.

  It is too early to assess what the impact on services has been of this extra investment since approval of many of the Network plans was not finalised until the summer of 2003 and of course added to that has been the normal delays in getting people into post. It will probably not be until the end of 2004-05 that a full assessment can be made in respect of the intended effect of reducing inequalities of access to services. It should however be possible to measure the impact on the level of NHS funding contribution to the costs of voluntary hospices at the end of 2003-04.

  The statement in the Cancer Plan that the investment of £50 million was to end inequalities in access was clearly an overstatement. It may reduce them but much more investment would be required to end them.

13.3  The NICE Guidance

  The National Council supports the recommendations which it anticipates will be incorporated in the final version of the Guidance when published later this month. If all the recommendations can be fully implemented then the supportive and palliative care available to cancer patients would be improved to the standards implicit in the National Council's policy objectives set out in Section 2 of this paper. Unfortunately there must remain a considerable doubt as to whether the recommendations can be implemented in full without additional resources being found at local level or being earmarked at national level. However, it is recognised that many of the recommendations are really about changing professional or organisational practice and which may be able to be implemented without any or with only little increased expenditure.

  The Sheffield University School of Health and Related Research has provided an economic impact assessment of the Guidance. That is however somewhat conjectural in nature. It is suggested that as Cancer Networks complete their population-based needs assessments, a clearer could emerge of the actual costs of trying to bring local services into compliance with the NICE Guidance. That information can be collected and a much more precise estimate of the costs of implementation can be made and of the resource gap between what is available and what is needed. It should be possible to do that during the next 12 months.

13.4  The non-cancer agenda

  The NICE Guidance has been developed for adults with cancer. However, the National Council is of the view that its recommendations are by and large applicable to the supportive and palliative care that other disease and patient groups may need. An assessment does need to be made of the implications of that for each of those groups. It would appear that one way forward would be for the National Service Frameworks that have already been developed for other groups eg Coronary Heart Disease, Older People to be reviewed in the light of the NICE Guidance. It would seem sensible to do that in association with the key participants in the development of the Guidance. The outcome of such a process would be a set of recommendations for supportive and palliative care that were specific to each particular disease or patient group. The economic impact of such proposals should be assessed and some funding allocation be provided (similar to the £50 million for cancer) to start the development of services.

13.5  Principal conclusions

    —  Government policy on palliative care is moving generally in the right direction.

    —  It is too early to assess the impact of that policy on services and the aim of reducing inequalities of access to specialist services.

    —  Full implementation of the NICE Guidance will probably be dependent on the availability of additional resources.

    —  A more precise estimate of the gap between resources available and resources needed for NICE compliance can probably be obtained from the results of each Network's needs assessment when completed.

    —  The potential implications of the Guidance for other disease and patient groups need to be reviewed in the context of the NSFs that have already been published for some of those groups.

SECTION 14

Summary of key points

Current Access to Specialist Palliative Care Services

  1.  95% of access to services is by people with cancer.

  2.  Those dying from diseases other than cancer suffer gross inequalities in their access to services.

  3.  At least 40% of those with cancer gain access to services in the last year of life (around 57,000 out of 143,000).

  4.  As few as 1% of those with a non cancer diagnosis gain access to services in the last year of life (around 3,000 out of 280,000).

  5.  Around 83% of all deaths are people aged 65 and over and yet only between 60 and 68% of people gaining access to services are 65 or over.

Distribution of Specialist Services

  1.  Palliative care need in populations varies widely from one population to another.

  2.  It is estimated that palliative care need varies between Cancer Networks by as much as 60% ie between the Network with highest need and that with least need.

  3.  It is estimated that palliative care need within Networks varies by as much as 75% between highest and lowest assessment of need.

  4.  The distribution of services both within and between Networks does not reflect differences in assessed need.

  5.  Accordingly access to services is not proportionate to assessed need.

  6.  Growth and development of services in both the NHS and the voluntary sector often appears to have been largely random when compared with assessed need.

  7.  There is a need for all Cancer Networks to undertake population based needs assessment and employ a common methodology for doing so.

  8.  The palliative care networks within Cancer Networks would benefit from a continuing support and development programme to facilitate action to solve access problems.

Quality of Services

  1.  The true test of the quality of palliative care is what patients and carers think about the care they receive.

  2.  There may be benefit in the development of a standard survey instrument for surveying patient/carer views.

  3.  National standards for structure and process should be derived from the NICE Guidance recommendations.

  4.  Such standards need to be applied to services provided by all sectors—NHS, voluntary and independent.

  5.  There should be close collaboration between the bodies that are engaged in review, inspection and organisational audit and development of hospice and palliative care services ie Cancer Services Peer Review, CHAI and other bodies eg HQS, QPR.

Patient Choice

  1.  Patient preferences for place of care and death need to be identified, recorded and updated when required.

  2.  Cancer Networks with their local PCTs need to assess what additional resources/services are required to enhance patient choice.

  3.  PCTs will need to commission levels of service consistent with such assessment.

  4.  This may involve a transfer of resources from care in hospital to care in the community.

Funding Specialist Palliative Care Services

  1.  There is currently no rational system of funding voluntary hospices for the services they contribute to health care.

  2.  A new system is required that reflects the full cost of provided by the voluntary sector for the NHS.

  3.  Such a system would be in line with Guidance from the Charity Commission and the recommendations of the 2002 HM Treasury Cross Cutting Review on the relationship of public bodies with the charitable sector.

  4.  Such a system would also need to be in line with the NHS reforms of the mechanisms governing NHS funding flows—Payment by Results.

  5.  Payment for services commissioned by PCTs and delivered by specialist providers (NHS and voluntary) would need to be in accordance with a national tariff of prices.

  6.  This tariff would need to be based on reference costs—the National Partnership Group has initiated a project for their development.

  7.  The realistic date for developing and implementing a national tariff is probably 2007-08. However, an interim tariff based on the work accomplished so far on reference costs should be implemented for 2005-06.

  8.  The additional costs to PCTs are likely to be in excess of £100 million—they will need some additional resources to help them move from their current levels of funding voluntary hospices to payment by results.

Workforce Issues

  1.  There is a need for a national education and training programme in palliative care for the non-specialists in palliative care

  2.  There is a need for a national workforce survey of current specialist palliative care staff resources.

  3.  A survey is also needed of the likely future demand for specialist staff taking into account likely natural wastage and the additional requirements flowing from the NICE Guidance.

  4.  Solutions to the current problems arising from inability to recruit are urgently needed.

Working in Partnerships

  1.  The palliative care networks within the Cancer Network structure are beginning to work well.

  2.  Some of these networks need more managerial support.

  3.  There is a continuing need for a support and development programme for these networks—this is being provided jointly by the National Council and the Cancer Action Team.

  4.  The establishment of the National Partnership Group has been an important step forward in creating a working partnership at national level.

Assessment of the Impact of Government Policy

  1.  Government policy on palliative care is moving generally in the right direction.

  2.  It is too early to assess the impact of that policy on improving care and the aim of reducing inequalities in access to services.

  3.  Full implementation of the NICE Guidance will probably be dependent on the availability of additional resources.

  4.  An estimate of the gap between resources available and resources needed for NICE compliance should be obtained from the results of each Network's needs assessment when completed.

  5.  The potential implications of the Guidance for non cancer disease and patient groups should be reviewed in the context of the NSFs that have already been published or are in preparation.

  6.  The implementation of recommendations for supportive and palliative care arising from that process should be costed for each principal disease and patient group and a central budget established to facilitate implementation.

March 2004



 
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