Response to the Terms of Reference
2. ISSUES OF
CHOICE IN
THE PROVISION,
LOCATION AND
TIMELINESS OF
PALLIATIVE CARE
SERVICES, INCLUDING
SUPPORT TO
PEOPLE IN
THEIR OWN
HOMES
2.1 Hospices and patient-centred care
One of the fundamental principles of hospice
care has always been to treat people as individuals and to support
them to make their own choices, rather than imposing a one-size
fits all model. As a patient at St Gemma's Hospice writes "When
I came to St Gemma's the first thing that struck me was that I
was asked what I wanted, both by way of physical surroundings
(the room furnishing) and by way of personal accomplishment (what
I actually wanted by way of help). I told them I wanted a place
to sleep, to cry, to think, to try and find myself again and all
these things they truly tried to provide."
The wide range of care models available in hospices
supports patient choice. The diversity and high level of skills
within multi-disciplinary teams enables the hospice to respond
to individual patient needs, and the absence of barriers between
health and social care enables hospices to care for the whole
person. The strong links between voluntary hospices and their
local communities mean that hospices are responsive to the needs
of local people.
2.2 Availability of services
The biggest inhibitor of choice in palliative
care services is the non-availability of services for many people.
While people who access hospice services have access to a wide
range of choices, there are many others who have no choices about
palliative care at all, either because there is a shortage of
services which can meet their needs, or because NHS clinicians
do not refer them to the available services.
At present, 95% of people accessing hospice
services have cancer.[3]
It has been estimated that there may be as many as 300,000 people
dying from progressive diseases other than cancer each year who
need palliative care.[4]
Even for people with cancer, there are currently no national figures
to show what proportion of people are accessing the services they
need.
Many hospices are already trying to help by
extending their services to other disease groups or offering training
to other providers, and Help the Hospices hopes to make grants
available over the next year for hospices to develop non-cancer
services. However, much more could be done if these efforts were
supported by clear Government leadership and strategy. At present,
there is a lack of NHS resources and co-ordination to support
the development of services. In order to ensure that all terminally
ill people in England have access to high quality care of their
choice at the end of life, the Government needs to offer:
— Sufficient resources to fund existing
and new services.
— A commissioning process which supports
existing services and encourages service development in line with
need.
2.3 Government leadership and strategy
At present, there is nobody in Government with
overall responsibility for hospice, palliative care or end of
life strategy. Palliative care for adults with cancer falls under
the Minister for Public Health's portfolio, as part of her cancer
brief. We believe that palliative care for children is the responsibility
of the Parliamentary Under Secretary of State for Community, although
there is no clear government strategy for the development of children's
palliative care services. The forthcoming guidance from the National
Institute for Clinical Excellence (NICE) sets out the way ahead
for palliative care services for adults with cancer. The National
Institute for Clinical Excellence (NICE) has also recently identified
a need for palliative care for patients with Chronic Obstructive
Pulmonary Disease and Chronic Heart Disease. There is a need to
join up these strategies for different disease groups into an
overall strategy for palliative care.
The Government has made some first steps in
this direction, expressing its commitment in Building on the
Best: Choice Responsiveness and Equity, to developing services
for people with non-cancer diagnoses and making available £12
million to support initiatives such as the Gold Standards Framework
and the Liverpool Care Pathway, which will help to ensure that
people who do not access specialist palliative care will receive
good care at the end of life. However, this is clearly only a
first step and does not begin to address, for example, the need
for specialist palliative care services and respite care for people
with non-cancer diagnoses. There is a need for the Government
to work with hospices and other service providers to consider
the full range of services that should be available to people
with non-cancer diagnoses and their carers, and what steps need
to be taken in order for this to happen.
There is a risk that NICE's disease-specific
approach will result in a fragmented approach to services, and
disparities in services available for people with different diagnoses.
It may be helpful to consider an approach being developed in the
United States, which identifies three trajectories of chronic
illness into which most deaths from terminal illness fall. Services
can then be organised around these trajectories rather than according
to specific diagnoses. More information on this approach is available
in Living Will at the End of Life: Adapting Health Care to
Serious Chronic Illness in Old Age. This publication can be
found on the RAND Health home page at www.rand.org/health.
In addition to joining up policy on palliative
care, we believe there is a need to look more broadly at how we
approach death as a society. Death is often still seen as a taboo
subject, too difficult and dangerous to mention. But this reluctance
to acknowledge death can make people more isolated and afraid.
There are many benefits to be gained by supporting citizens to
cope with death and loss. These include psychological and psychosocial
benefits to the individual, with a corresponding reduction in
demand for health services, and more stable workforce benefiting
employers and the economy. Palliative care services are an important
way of helping people to cope with death and loss, but there are
other ways that this process could be supported.
These include:
— benefits and other support for carers;
— education for non-health care staff
who interact with the public—eg social services staff, benefits
advisers, etc;
— links between palliative care services
and prisons, secure mental health hospital wards, etc;
— any potential improvements to the
burial system that may be identified by the current review of
burials. There may also be issues relating to coroners or the
funeral industry which could be addressed.
While some of these are addressed by palliative
care services, it would be helpful if they could also be addressed
for people who die of causes other than terminal illness and their
carers and families.
We believe that the UK could benefit from a
cross-departmental strategy, which could bring together a range
of Departments including the Department of Health, the Home Office,
the Department for Education and Skills and the Department for
Work and Pensions, to take a broader view of the needs of people
at the end of life. One model for this might be the Canadian end
of life strategy, led by the Minister with Special Responsibility
for Palliative Care, Senator Sharon Carstairs, which has brought
together policy-makers from a range of government departments
to develop a national end of life strategy.
We propose that the Government ensure that there
is one Minister with responsibility to join up palliative care
policy across diagnoses and for adults and children working closely
with palliative care providers and patient and carer organisations.
We propose that the Minister for Palliative
Care be asked to co-ordinate the development of a cross-departmental
strategy, involving stakeholder organisations from outside Government,
looking at how we can support people in the UK to cope with death
and loss.
2.4 Resources to support the development of
services
The development of services in line with NICE
guidance for people with cancer, and for people with non-malignant
diseases will require a significant injection or transfer of funds.
This written submission includes a number of proposals for building
on the high standards already achieved in order to develop: a
comprehensive understanding of need, a national strategy for the
totality of palliative care and new approaches to better meet
the diverse needs of the population. A clear focus could be given
to these activities by establishing a National Development Fund
to fund projects to test these ideas on a consistent basis and
to promote the roll-out of good practice and innovation across
all providers.
We propose that the Government, in conjunction
with palliative care providers, assess the resources required
to meet the overall palliative care needs of the population, and
create a National Development Fund made available locally to support
the development of hospice and palliative care services.
2.5 Current NHS funding of independent hospices
The Treasury's Cross-Cutting Review on the role
of the voluntary sector gives 2006 as a deadline by when statutory
agencies should be meeting the full costs incurred by the voluntary
sector in providing public services. We estimate that independent
adult hospices in the UK currently receive an average of 31-34%
of their annual costs from the NHS and children's hospices receive
around 5%. We would not expect the NHS to meet 100% of hospice
costs, because hospices will always use charitable funds to provide
additional services or a higher quality service. However, the
current contribution is clearly not sufficient to pay even for
a basic level of service.
2.6 Clarifying what the NHS is responsible
for
There are currently many uncertainties about
what level of service the NHS is required to fund. For services
for adults with cancer, there will shortly be a description of
the service that should be available. It is reasonable in the
case of these services to expect the NHS to comply with the Treasury's
guidance on full cost recovery by the 2006 deadline. In guidance
to be published in March 2004, the National Institute for Clinical
Excellence will set out the services that should be available
for adults with cancer. While we have some concerns about the
process and conclusions of this review, at least this provides
a starting point for assessing what is considered to be a basic
level of service funded by the NHS. For children's services and
for non-malignant disease we are not aware of any guidelines as
to the levels of services that should be available, or how the
costs of these should be calculated.
We propose that guidance on palliative care
services for children and for non-malignant disease should form
the next steps in developing a national strategy on end of life
care.
2.7 Agreeing how services should be paid for
Since September 2002, Help the Hospices has
been a member of a National Partnership Group chaired by the National
Cancer Director, which aims to develop a framework for paying
for specialist palliative care services for adults with cancer.
The National Partnership Group is exploring how the Payment by
Results system which is currently being rolled out across the
NHS can be adopted for specialist palliative care. This system
has not yet been tested in commissioning with the voluntary sector
and so far it has been limited to acute interventions such as
surgery. There are a number of issues to be resolved, including
what the "unit" of care would be for palliative care
and how different levels of complexity of need can be reflected
in costings. It will clearly be important to consult widely with
the voluntary sector to identify any potential difficulties. The
Department of Health document Payment by Results Consultation:
Preparing for 2005 proposes that the framework be tested in the
NHS over the next three years and suggests 2008 as a likely date
for Payment by Results to be applied to commissioning with the
independent sector.
2.8 Agreeing an interim tariff
We agree that 2008 is a realistic deadline for
implementing the full Payment by Results framework. We do not,
however, think this should cause any delay in the NHS meeting
its legal responsibility to fund services where responsibility
for these has been established. In liaison with the National Partnership
Group, Help the Hospices has undertaken research into the costs
of inpatient specialist palliative care services provided by independent
hospices (see appendix E for details). The National Partnership
Group is now considering whether this could form the basis of
an interim national tariff which could be implemented by 2005-06.
Further work is needed to agree service specifications for home
care and day care services, so that research into the costs of
these can be undertaken. This needs to take place as soon as possible,
and we are hoping that this can also be achieved by 2006. A national
tariff will need to take account of Agenda for Change, which we
estimate could lead to an increase of 10-15% in hospice costs,
and of increasing fees from the Criminal Records Bureau and the
National Care Standards Commission.
Clearly, some services will not be covered by
tariffs in 2003-04—for example services for people with
non-cancer diagnoses and for children.
We propose that the National Partnership Group
should develop interim tariffs for inpatient, home and day care
services for people with cancer in time for these to be implemented
in 2005-06, and that the Department of Health should fund this
work. Further, that funding should be made available to PCTs so
that interim tariff payments can be made to meet identified needs.
We propose that the Department of Health work
closely with providers to agree how services for people with non-cancer
diagnoses and children will be funded in the future.
We propose that the Department of Health work
closely with providers to ensure that services not covered by
a national tariff are not jeopardised by inflationary pressures
such as those arising from Agenda for Change and increasing regulatory
fees.
2.9 Services other than specialist palliative
care
Government policy distinguishes between specialist
and generalist palliative care and the National Partnership Group
only has a remit to address funding for specialist palliative
care services. However, some services which patients need, and
which are often provided by hospices, seem to fall through the
gap between specialist and generalist palliative care. These include
Continuing Care, respite care and lymphoedema clinics. Many hospices
have developed these services to meet local need and fill gaps
in service provision. However, there is not consistent support
for these from the NHS.
We propose that the Department of Health, in
conjunction with palliative care providers and patient representative
organisations, identify services needed by patients at the end
of life but which are not considered to be specialist palliative
care, issue guidance on how they should be funded and ensure funds
are available for these services.
2.10 A commissioning process which supports
existing services and encourages service development in line with
need
2.10.1 Needs assessment
As far as we are aware,
needs assessment methodology for specialist palliative care services
exists for people with cancer but not for people with non-malignant
diseases. However, even for cancer the current methodology is
based on comparing different parts of the country, rather than
a bottom-up assessment of what people need and want. This means
that Cancer Networks can find out how they are doing in relation
to each other, but it doesn't enable them to establish whether
they are meeting the actual level of need.
We propose that the Department
of Health work with specialist palliative care providers to develop
a methodology which Cancer Networks can use to undertake needs
assessment based on evidence of patient need rather than on national
average service levels.
2.10.2 Commissioning from the voluntary
sector
The recent Department of
Health consultation document Making Partnership Work for Patients,
Carers and Service Users lists among its aims making the voluntary
and community sector part of mainstream service provision and
increasing the voluntary and community sector contribution to
service delivery. However, in comparison with local government,
there is a lack of expertise within the NHS regarding commissioning
with the voluntary sector. For example, PCTs do not appear to
be aware of the Treasury requirement that voluntary organisations
should be paid the full costs incurred in providing services commissioned
by the public sector.
Voluntary organisations
are often good at identifying new areas of need and developing
innovative services to meet them, even before those needs have
been recognised by the NHS. At present, voluntary organisations
are often left to continue funding such services indefinitely,
because there is little incentive for the NHS to take over funding
them once it becomes accepted that they are meeting identified
needs. The Charity Commission advises, however, that if a charity
identifies an unmet need, which is required to be met by a public
body, "it would be acceptable for a charity to meet that
need at its own expense only as a short term or emergency measure
and not as part of any contractual commitment".[5]
We propose that the Department
of Health develop guidance for Cancer Networks and PCTs on commissioning
from the voluntary sector, including the need to pay voluntary
organisations for the provision of services which are already
meeting identified needs.
We propose that Strategic
Health Authorities monitor how well Cancer Networks and PCTs are
complying with this guidance.
2.10.3 Delayed discharges from hospices
Patient choice is limited
when delayed transfers occur between providers of care. The majority
of hospice inpatient stays result in discharge, rather than death,
because many people choose to go home or to a care home once their
symptoms are under control. Hospices are, however, finding it
difficult to discharge patients and there are a number of reasons
for this. Help the Hospices conducted a workshop in October 2003
which helped us to understand at least some of the causes of delayed
discharges from hospices. These include:
(a) inappropriate criteria
for Continuing Care, making it difficult for patients to get funding
for an NHS Continuing Care package. In particular, some Strategic
Health Authorities give rigid criteria for life expectancy—eg
the person must have fewer than eight weeks to live—when
national guidance states that this is inappropriate.
(b) delayed assessments for
Continuing Care. This can be helped where hospice staff are permitted
to make assessments for Continuing Care, which happens in some
parts of the country.
(c) some hospice staff having
a poor understanding of Continuing Care—training sessions
run by the PCT are not always open to hospice staff.
(d) hospice patients being
given a lower priority as a result of the Community Care (Delayed
Discharges etc) Act, because palliative care patients are explicitly
excluded from the Regulations. Hospices are reporting to us that
social services and community hospitals are prioritising acute
hospital patients over hospice patients as a result of the Act.
(e) shortage of places in
care homes that can care for people at the end of life, domiciliary
carers, equipment, appropriate services for young people, and
staff with appropriate skills. This could be helped by a comprehensive
end of life strategy, especially by evidence-based needs assessment
and resources being made available.
As hospice patients are
nearing the end of life, it is particularly important that they
are able to move between settings quickly—it makes no sense
to prioritise acute hospital patients over hospice patients and
goes against the principle of enabling people to choose their
place of death.
Help the Hospices is planning
to publish a pamphlet for hospice staff on Continuing Care and
to undertake some research on the extent and causes of delayed
discharges from hospices.
We propose that the Department
of Health identify any Strategic Health Authority Continuing Care
criteria which give rigid timescales for life expectancy and ensure
that these are changed.
We propose that the Department
of Health include hospice patients in a revised set of Delayed
Discharges Regulations at the earliest opportunity.
3. EQUITY IN
THE DISTRIBUTION
OF PROVISION,
BOTH GEOGRAPHICAL
AND BETWEEN
DIFFERENT AGE
GROUPS
3.1 Geographical equity for non-cancer services
There is clearly not equity for people with
diseases other than cancer, as so few services are available.
Many hospices are trying to develop these services, but this needs
to be supported by Government strategy.
We propose that geographical equity in non-cancer
palliative care services be addressed as part of the development
of a national strategy as recommended 2.3.
3.2 Geographical equity in services for adults
with cancer
In the provision of public services, there is
a balance to be achieved between local determination of priorities
and geographical equity. Our understanding of current Government
policy on palliative care for adults with cancer is that there
should be local decision-making about priorities, but that all
areas should be at least working towards a nationally-determined
level of service provision. However, there is nothing to stop
PCTs working towards this at different rates, or supplementing
it if they choose. There is therefore no guarantee of geographical
equity. As part of its recent move to focusing in the longer-term
on the quality of care rather than on specific targets, it may
be more realistic for the Government to focus on ensuring that
an agreed level of service is available for all.
The Government could support the development
of a more equitable pattern of service provision by building a
picture of where the service gaps are and targeting investment
at those areas. As recommended 4.1, this would depend on having
an evidence-based needs assessment methodology, an effective commissioning
framework, and sufficient resources to support the development
of services. Targeted investment should not be at the expense
of sustainable funding for existing services which are meeting
identified needs, as has been the case in the past.
When considering geographical equity, it is
important to look at the catchment areas of services rather than
where the buildings are. Most hospices cover large catchment areas
which include more than one PCT area, and therefore serve people
from a range of different communities.
We propose that the Department of Health and
the NHS work closely with providers of palliative care services
to build a picture of where service gaps are and consider targeting
increased investment at these areas.
4. COMMUNICATION
BETWEEN CLINICIANS
AND PATIENTS;
THE BALANCE
BETWEEN PEOPLE'S
WISHES AND
THOSE OF
CARERS, FAMILIES
AND FRIENDS;
THE EXTENT
TO WHICH
SERVICE PROVISION
MEETS THE
NEEDS OF
DIFFERENT CULTURES
AND BELIEFS
4.1 Access to services for different groups
Everyone in the UK should be able to access
hospice and palliative care services when they need them. Many
hospices have developed programmes to ensure services are accessible
for ethnic minority groups. Help the Hospices is currently working
with hospice staff and other interested organisations to find
out what we can do at a national level to help hospices ensure
services are accessible. In addition to ethnicity, we hope to
consider ensuring access for other groups including:
— People with learning difficulties;
— Lesbian, gay and bi-sexual people;
and
— other groups for whom barriers may
exist.
The Minimum Data Sets collected by the National
Council for Hospice and Specialist Palliative Care Services show
that 3.9% of adult hospice patients in the UK are non-white. This
looks low in comparison with the figure of 8.7% for the total
population. However, as 65% of hospice patients are over 65 and
only 2.6% of over-65 year olds are non-white, it may be that the
proportion of hospice patients from ethnic minorities broadly
reflects the numbers for the relevant age group in the wider community.
However, this figure is of limited use in determining whether
there are barriers to access for specific communities and it is
important for service providers to continue to make efforts to
ensure that services are accessible to all.
It is important to consider not only whether
services meet people's needs but also what the perceptions of
referrers to hospice services are and whether these are having
an impact. If clinicians have a perception that hospice care is
more appropriate for certain groups, this could have an effect
on referral patterns. Many clinicians also find it difficult to
talk about death with patients, and it is therefore possible that
they might avoid referring a patient to a hospice in order to
avoid broaching the subject of death.
We propose that funding be made available to
support:
— local projects to widen access for
people from potentially disadvantaged groups;
— national projects to develop an understanding
of barriers to access and how these can be overcome.
4.2 Carers' benefit and leave entitlement
Carers of people with terminal illnesses have
extremely high levels of unmet need and distress. One study of
patients and families in the last weeks before death found that
the needs of the family exceeded those of the patient.
One positive change that would make a real difference
to carers would be the introduction of a Compassionate Care Benefit
and leave entitlement, similar to that introduced in Canada in
January 2004. This allows a family member or a number of family
members of a terminally ill person to claim benefit for up to
six weeks while they care for the terminally ill family member.
The Canadian Government have also introduced a statutory entitlement
of up to eight weeks leave to provide compassionate care to a
family member with a terminal illness.
We propose that the Government consider introducing
a Compassionate Care Benefit and leave entitlement similar to
that introduced in Canada in January 2004.
5. SUPPORT SERVICES
INCLUDING DOMICILIARY
SUPPORT AND
PERSONAL CARE
See comments on NHS Continuing Care under 2.10.3
6. QUALITY OF
SERVICES AND
QUALITY ASSURANCE
The reputation of hospices in their local communities,
and the willingness of local people to give time and money to
their hospice are a testament to the quality of services provided
by independent hospices. Appendices A, B and C offer some perspectives
from patients and carers about the quality of the service they
have received.[6]
Since 2002, inpatient hospices and hospice at
home services have been regulated by the National Care Standards
Commission (NCSC). From April 2004, this responsibility will transfer
to the new Commission for Healthcare Audit and Inspection (CHAI)
and the Commission for Social Care Inspection (CSCI). Help the
Hospices has developed a positive working relationship with NCSC
and has overall found them helpful and open to partnership working.
We have several concerns, however, about the current system which
we would like the Committee to consider. Many hospices also follow
voluntary quality assurance programmes.
6.1 Integration with existing quality programmes
NCSC Inspections can take up a lot of time,
be at short notice and stressful for staff involved. The administrative
time involved in preparing for the inspection can be over 100
hours. Hospices have also found that inspectors are not always
familiar with hospice care. It would be helpful if the NCSC inspection
could be integrated more closely with existing quality/accreditation
providers such as the Health Quality Service (HQS) and Quality
by Peer Review (QPR). These quality providers are familiar with
the hospice environment and conduct more in-depth inspections
than the NCSC. It should therefore be possible to integrate the
processes, saving time for all concerned without sacrificing the
rigour of the inspection process.
We propose that NCSC and organisations such
as QPR and HQS work together to integrate their requirements for
audit and inspection where possible.
6.2 Modular standards
The current Minimum Care Standards are based
around boundaries between providers, so that for example there
are totally separate standards for care homes, hospices and nursing
agencies. This leads to some curious situations where similar
services are being assessed against different sets of standards.
For example, a stand alone hospice at home service is assessed
against the nursing agency standards, whereas a hospice which
provides a hospice at home service in addition to an inpatient
service is assessed against the hospice standards. This problem
will be exacerbated when, in April 2004, responsibility for hospices
moves to CHAI and responsibility for nursing agencies moves to
CSCI.
Disadvantages of this system are that:
— patients cannot assume that the same
standards will apply irrespective of who provides the care; at
present a patient receiving Continuing Care in a hospice would
have a different standard of care to a patient with similar needs
receiving Continuing Care in a nursing home.
— it makes it difficult to provide
services which cross boundaries—eg both specialist palliative
care and Continuing Care, or specialist palliative care and domiciliary
care.
— the current system could discourage
flexible working and innovation—eg successful organisations
developing into new areas to meet identified needs.
The solution to this problem would be to develop
more modular standards, which can be selected as appropriate for
each provider. These should be based more around patient need
rather than organisational structures, so that for example, the
standards you had to meet would depend whether you were providing
specialist palliative care, generalist palliative care, primary
care, continuing care, nursing care, or residential care, and
on whether you were providing it in an inpatient unit, a day care
setting or in patients' own homes. Patients could then expect
the same standards for any particular service, irrespective of
the type of organisation (eg hospital, care home, hospice, nursing
agency, primary care team).
We propose that CHAI and CSCI explore the development
of more modular standards which would match the range of services
available.
7. EXTENT TO
WHICH SERVICES
MEET THE
NEEDS OF
DIFFERENT AGE
GROUPS AND
DIFFERENT SERVICE
USERS
See comments under sections 2.2, 3.1, 3.2 and
4.1.
8. GOVERNANCE
OF CHARITABLE
PROVIDERS, STANDARDS
OF ORGANISATION,
LINKS TO
THE NHS AND
SPECIALIST SERVICES
8.1 Regulation
As charities, the governance arrangements of
hospices are regulated by the Charity Commission. As set out under
5) above, hospices are also regulated by NCSC and many are involved
in peer review programmes. There is sometimes a lack of awareness
within the NHS of the high standards of governance and quality
within voluntary hospices and we are concerned about the impact
of this lack of awareness on commissioning processes.
8.2 Good governance
Help the Hospices has a programme of work to
support good governance in hospices. This includes:
— a Trustee Induction Pack and a Guide
to being a hospice trustee,
— a programme of in-house Board Development
workshops,
— a residential workshop on Developing
the relationship between Chairman and Chief Executive.
We do not hold centrally information on the
membership of independent hospice trustee boards. However, we
know that many hospices invite local NHS staff to sit on trustee
boards to ensure continuity. We believe that hospices are more
responsive to the needs of local communities than NHS services,
which are subject to so many national priorities and targets.
Hospices tend to draw their trustees from their local community
and are dependent on the local community for a large proportion
of their income.
8.3 User involvement
It can be difficult to involve patients in the
development of hospice services, because they are usually very
ill and nearing the end of their lives. However, a number of hospices
have developed innovative ways of seeking patient and carer perspectives.
For example, St Christopher's Hospice in Sydenham has developed
a user involvement panel, to involve patients and carers in service
development. See their separate submission for more information
about this.
Hospices undertake regular patient surveys—a
requirement of the Care Standards Act—and Help the Hospices
has developed a survey template that hospices can use for this
purpose. We are co-ordinating a benchmarking project for hospices
who wish to compare the results of their patient surveys with
those of other hospices.
8.4 Links with the NHS
Most hospices are active members of local Cancer
Networks, through which they contribute to the development of
local service planning, and the development of local policies
and care pathways.
See also our comments on delayed discharges
and Continuing Care regarding smooth transfers between services.
9. WORKFORCE
ISSUES INCLUDING
THE SUPPLY
AND RETENTION
OF STAFF
AND THE
QUALITY AND
ADEQUACY OF
TRAINING PROGRAMMES
As in other healthcare sectors, the aging population
is making recruitment of clinical staff more difficult, and it
is expected that this situation will become more severe. Some
hospices are already having difficulty recruiting nurses, especially
in areas where the cost of living is high.
There is a shortage of medical staff to work
in existing hospice and specialist palliative care services, and
this will clearly be an issue if services are to be developed
further. The draft NICE guidance on supportive and palliative
care for adults with cancer recommends that every specialist palliative
care team should include a consultant as a core member of the
team. We know, from working in the National Partnership Group
to approve Cancer Network spending plans, that Cancer Networks
were looking to recruit significantly more consultants in 2003-04
than currently exist in the UK. It is clear that significant resources
are being spent in trying to recruit non-existent consultants.
We believe that this issue needs to be addressed nationally. There
is clearly a need for more consultants. However, it may also be
necessary to be more creative about the roles that can be played
by different members of the team, and to allow for more of a spectrum
in the levels of specialism provided in different teams. There
is currently no recognition of equivalent or useful experience
in other specialities, such as GPs with experience in palliative
care, and little recognition of the roles and responsibilities
of non-consultant medical directors and Staff Grade doctors, who
are working in hospices and hold recognised qualifications from
the Royal Colleges.
Hospices play a vital role in providing education
and training for health professionals. Every day the hospice movement
is engaged in providing learning opportunities which shape the
knowledge, values and attitudes of other professional groups,
and in turn the quality of care given to vast numbers of patients
and families. However, at present there is no central funding
strategy for this work and much of it is paid for from charitable
funds. Increasingly, hospices are contributing to undergraduate
and postgraduate training in medical schools. The Newcastle hospices
estimate that their costs for contributing to undergraduate medical
training alone are at least £35,000 per annum, but they are
paid only £4,700 for providing it.
We propose that the Department of Health work
closely with representatives of specialist palliative care providers
to consider the best ways to provide medical cover in palliative
care given the shortage of consultants in palliative medicine.
We propose that, given the shortage of consultants,
having a consultant as a member of the team should not be a condition
for receiving funding nor should it adversely effect inspection
ratings under CHAI.
We propose that the Department of Health work
closely with hospices to develop a framework for funding palliative
care education which ensures that providers from all sectors receive
a fair price for the contribution they make.
9.1 Volunteers
There are over 90,000 volunteers working in
UK hospices, contributing more than 18 million hours at an economic
value of around £135 million.[7]
We believe that the role volunteers play has an impact on the
quality of care and the environment in the hospice, and provides
important links for hospices with their local communities. Volunteers
come from a wide range of social and ethnic backgrounds and age
groups, and can often provide links into diverse communities helping
to improve access to the service for "hard to reach"
groups. The involvement of volunteers also has a positive impact
on the wider community, for example in the development of social
capital.
As one patient writes—see Appendix A "Time,
effort, energy, thought is given freely by the people in the community
at the hospice. Very seriously ill people are not only able to
revalue their lives but to enhance their preciousness and even
their longevity, supported by the energy of the community around
them. The determination and imagination of the community to contribute
more would be dramatically energised if there were to be greater
awareness and understanding of the contribution made by hospices
to the health and emotional wealth of our communities."
10. FINANCING,
INCLUDING THE
ADEQUACY OF
NHS AND CHARITABLE
FUNDING AND
THEIR RESPECTIVE
CONTRIBUTIONS AND
BOUNDARIES
See comments under sections 1.1, 2.4, 2.7, 2.8
and 2.9.
11. THE IMPACT
AND EFFECTIVENESS
OF GOVERNMENT
POLICY INCLUDING
THE NATIONAL
SERVICE FRAMEWORKS,
THE CANCER
PLAN AND
NICE RECOMMENDATIONS
Our comments in the above sections relate to
many aspects of Government policy. Our main concerns about Government
policy (set out in 1) above) are:
(a) the lack of strategy on services for
people with non-malignant diagnoses and for children,
(b) the need for an effective commissioning
process and adequate funding for services.
11.1 Draft NICE guidance
We believe that, in general, the draft NICE
guidance represents a significant step forward in palliative care
policy, in that it sets out what adults with cancer should expect
from supportive and palliative care services. It is especially
strong on patient involvement and the role of self-help groups
and informal carers. We had some remaining concerns about the
last draft of the guidance and these include:
— It is not clear how Continuing Care
relates to supportive and palliative care or that PCTs have a
responsibility to commission palliative care as part of Continuing
Care packages.
— The guidance appears quite restrictive
about the range of teams that contribute to a specialist palliative
care service across a Network.
— We have recommended that respite
care be identified in the guidance as an area for further research.
At present, the guidance gives little detail about the range of
respite care services that should be available.
— The guidance polarises services into
specialist and generalist, leaving a spectrum of existing services
which don't quite fit into either of these categories. It is not
clear how this distinction relates to the needs of patients, but
it is likely to have important implications for funding services.
We are concerned that the strict evidence-based
approach followed by NICE meant that not enough attention was
paid to involving and learning from service users and providers.
The guidance is very focused on NHS-managed services and does
not appear to recognise the major role of the voluntary sector
in specialist palliative care.
11.2 Cancer Networks
More work is needed to determine whether Cancer
Networks are the best mechanism for making decisions about funding
supportive and palliative care services. Cancer Networks are virtual
organisations with no funds to spend on services, which makes
it difficult for them to exert influence and means that they are
sometimes overruled by PCTs who hold the budgets. The fact that
Supportive and Palliative Care Networks are subgroups of Cancer
Networks means they are not best placed to plan services for other
disease groups. It also means that their boundaries are designed
to suit acute services rather than palliative care services, which
tend to work in smaller communities.
11.3 Assessing the impact of proposals on
the voluntary sector
The national Compact requires that Government
Departments assess the impact of any major new proposals on the
voluntary sector. We do not think this is happening sufficiently
within the Department of Health. For example, Agenda for Change,
Payment by Results and the Community Care (Delayed Discharges
etc) Act all have profound implications for the voluntary sector.
In all of these areas, the policy has been developed for the NHS,
and consideration of the needs of the voluntary sector has taken
place much later in the process.
We propose that the Department of Health ensure
that an assessment of the impact of major new proposals on the
voluntary sector is undertaken early in the policy-making process.
12. OTHER ISSUES
It is important for hospices to be included
in the new NHS electronic patient records system.
12.1 NHS National IT Programme: Commitment
to Hospice Inclusion
Over the next three years the NHS is investing
£2.3 billion in a major Information Technology development
programme, National Programme for IT, [NPfIT] that will enable
care providers across England to communicate electronically through
the Care Record Service [CRS]. The CRS will enable links to on-line
booking, electronic patient records, pathology results, digital
images, etc. This will provide an information rich environment,
communicating with all care providers. This will enable the patient
record to be accessed and contributed to contemporaneously resulting
in significantly improved patient care.
Hospices are included in the NHS IT Strategy
but are not yet explicitly included in the programmes except in
the London Cluster. The costs to include hospices in the NHS IT
programme at this stage would be minimal to the NHS. Not to include
hospices would mean excluding the main provider for palliative
care in the country from access to the electronic patient record.
Discussions have been underway with members
of the NPfIT Programme to secure commitment to include hospices.
We are still awaiting confirmation and clear guidance to be issued
to the Clusters. The remaining four NHS Clusters [excluding London]
are being approached to support and include hospices in these
key developments. There is no firm commitment to date, from the
four remaining Clusters to include hospices. A clear decision
is needed at government level to actively include hospices in
this development at this crucial stage. Timing is of the essence
as Cluster programmes for the next year are currently being finalised.
The cost to support hospices to achieve the
benefit of NHSnet and the CRS programme are minimal relative to
the NHS investment plans, yet have the potential to have a major
impact on how the NHS sector is able to communicate and work with
this voluntary sector in a much integrated way in the future.
For London, it was estimated that the total hospice activity and
numbers of staff to be involved related to less than 1% of the
NHS activity/staff.
If hospices are not supported within the programme,
the costs to undertake the development work outside the programme
would be prohibitive to these largely charitable funded organisations.
We propose that hospices are included within
the NPfIT programme.
13. CONCLUSION
Help the Hospices would welcome an opportunity
to meet with the Committee to give oral evidence. We would particularly
like to discuss the need for a national end of life strategy and
the development of more sustainable funding streams for services
commissioned by the NHS.
February 2004
3 Hospice and Palliative Care Facts and Figures 2003,
published by hospice information. Back
4
Briefing Number 12: Palliative Care for Adults with Non-malignant
Disease, published by National Council for Hospice and Specialist
Pallitative Care Services, April 2003. Back
5
Charities and Contracts, Charity Commission October 1998. Back
6
Appendices not printed. Back
7
The economics of hospice volunteering, by Katharine Gaskin,
Institute for Volunteering Research. Published by Help the Hospices,
September 2003. Back
| 
