Memorandum by the National Council for
Hospice and Specialist Palliative Care Services (PC 56)
1. THE NATIONAL
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
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
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.
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
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
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
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
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.
3.1 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 policyin
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 itfrom
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
Affirms life and regards dying as
a normal process.
Provides relief from pain and other
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
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
Those providing specialist contributions
to the supportive and palliative care of the patient and family.
Specialist palliative care services
Specialist psychological services
Information, advice and resource services
Palliative interventions eg palliative
radiotherapy, palliative surgery
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
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
Bereavement support services.
Education and training in palliative
The recommended composition of the specialist
team has been set out in the NICE Guidance on Improving Supportive
and Palliative Care.
5. CURRENT PROVISION
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
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
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
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
68% of patients are aged 65 and over
50.7% of admissions end in death
43% of admissions end in discharge
The mean length of stay is 12.9 daysthis
varies from 12 days in the smaller units to 14.6 days in the larger
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
64% of patients are aged 65 and over
The average length of a series of
attendances is 167 daysthis 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
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
68% of patients are aged 65 and over
The average number of visits per
patient is 5.3this 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
68% of all patients are aged 65 and
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
6.6 Out Patient Clinics
91% of all patients seen have a diagnosis
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
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.
7.1 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
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
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
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
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
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
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
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
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
National standards for palliative
care should apply to services provided by all sectorsNHS,
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
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
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
|Actual place of death|
cancer principal cause
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
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
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
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
10.3 Reform of mechanisms governing NHS funding flowspayment
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
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
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 NHSfrom 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
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
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
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 carethe 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.
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
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
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
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
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
"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
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
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
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
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
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 sectorsNHS, 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.
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
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 flowsPayment
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 coststhe
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 millionthey will need some additional resources
to help them move from their current levels of funding voluntary
hospices to payment by results.
1. There is a need for a national education and training
programme in palliative care for the non-specialists in palliative
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 networksthis 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
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.