Memorandum by Help the Hospices (PC 45)
1. INTRODUCTION
Help the Hospices—the national charity
for the hospice movement—welcomes the Health Select Committee's
inquiry into hospice and palliative care. In this submission,
we provide a brief introduction to the hospice movement, and set
out our vision for hospice and palliative care in the UK. We go
on to address the issues raised by the Committee in the terms
of reference, putting forward some proposals for the Committee's
consideration.
Help the Hospices supports hospices in the UK
through grant-aid; education; training; information and advice.
We also act as the national voice for the 188 adults' and children's
hospices run by local charities (known as "independent"
hospices). These services provide 72%[1]
of inpatient hospice care in the UK. This submission has been
put together following consultation with independent hospices
and is informed by our ongoing discussions with hospice staff,
trustees and volunteers. Help the Hospices represents independent
hospices across the UK, but our proposals in this submission relate
to England as this is the scope of the Health Committee's inquiry.
1.1 The Hospice Movement
The UK has been a world leader in the development
of hospice and palliative care services since the first modern
hospices were established in the 1960s. Since then, the hospice
movement has grown from a few isolated services, to over 220 adults'
and children's hospices across the country and the UK is now recognised
as an international centre of expertise for palliative care.
604,000 people died in the UK in 2001. By 2020
21% of the UK population will be over 65 years of age and many
more people will die of long term chronic conditions rather than
sudden acute diseases.
We estimate that 250,000 people directly benefit
from hospice care each year. As the size of the hospice movement
has grown, so has the range of innovative services on offer, as
we have seen with the development of the concept of hospice without
walls, and of services for people with illnesses other than cancer.
Much hospice care is now provided in patients' homes, and day
centres and inpatient units are also available for people who
need them. There are now 27 children's hospices in England, helping
to meet the needs of children with life-limiting illnesses and
their families. Hospices have also developed training programmes
for staff from other sectors, and many hospices provide advice
and support to other health services in their communities. The
ageing population is likely to lead to increased demand for quality
end of life care in a range of settings including hospices.
The voluntary sector has been the driving force
behind this movement and is still the major provider of specialist
palliative care in the UK. In many areas, it is a voluntary hospice,
which employs the multi-disciplinary specialist palliative care
team, who offer regular guidance to those providing palliative
care in all settings and also practical training for clinicians.
It is the commitment and support of local communities which has
funded the development of hospices and which has ensured that
hospices developed in line with the needs of local people. Hospices
benefit from the involvement of over 90,000 volunteers.
The annual expenditure of independent adult
hospices in England is over £300 million per annum. The buildings
and equipment owned by hospices are worth £300 million, and
these have mainly been paid for from charitable funds. Independent
adults' hospices raise over £200 million per year to fund
their services as they receive only 31-34% of their annual costs
from the NHS. Children's hospices receive an even lower contribution—an
average of around 5%. All care in adults' and children's hospices
is, however, provided free of charge to service users.[2]
1.2 Our vision
Help the Hospices has a vision that all people
should be able to access the care they need at the end of life.
Access to this care should not be limited by a person's age, diagnosis,
social or ethnic background or any other factor. Hospices in the
UK want to make this vision a reality, but we know that we cannot
achieve it alone and we want to work in partnership with the Government
and the National Health Service to make it happen.
We believe that the Government shares our vision,
but much remains to be done in order to achieve it. In this submission
we set out what we believe is needed to ensure people have access
to high quality care of their choice at the end of life. We believe
the Government needs to offer national leadership, sufficient
resources to fund existing and new services and a commissioning
process which supports existing services and encourages service
development in line with need.
In our comments below, we propose that the Government
appoint a Minister for Palliative Care who would join up policy
on palliative care for people with any diagnosis and for adults
and children, and co-ordinate a cross-departmental strategy on
how we can support people in the UK to cope with death and loss.
However, before new services are rolled out, it is important to
ensure that we move forward on the basis of a strong partnership
between the NHS and the voluntary sector supported by an appropriate
commissioning framework and sustainable funding for existing services,
before moving on to roll out the development of new services.
It is important for the Government to recognise the wealth of
experience and expertise in the voluntary hospice movement as
well as in the NHS and to build on this, rather than re-inventing
the wheel which can happen when voluntary providers are not seen
as central to the policy and service development processes.
1.3 Summary of Proposals
The following numbers relate to the sections
and sub sections which follow in the submission.
We propose that:
2.1.1 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.
2.1.2 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.
2.4.1 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.
2.6.1 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.
2.8.1 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.
2.8.2 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.
2.8.3 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.
2.9.1 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.
2.10.1 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.
2.10.2.1 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.
2.10.2.2 Strategic Health Authorities monitor
how well Cancer Networks and PCTs are complying with this guidance.
2.10.3.1 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.
2.10.3.2 the Department of Health include
hospice patients in a revised set of Delayed Discharges Regulations
at the earliest opportunity.
3.1.1 geographical equity in non-cancer
palliative care services be addressed as part of the development
of a national strategy.
3.1.2 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.
4.1.1 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.
4.2.1 the Government consider introducing
a Compassionate Care Benefit and leave entitlement similar to
that introduced in Canada in January 2004.
6.1.1 National Care Standards Commission
and organisations such as Quality by Peer Review and Health Quality
System work together to integrate their requirements for audit
and inspection where possible.
6.2.1 Commission for Health Audit and
Inspection and Commission for Social Care Inspection explore the
development of more modular standards which would match the range
of services available.
9.1.1 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.
9.1.2 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 the Commission for Health Audit and Inspection.
9.1.3 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.
11.3.1 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.
12.1.1 hospices are included within the
NPfIT programme.
1 Taken from figures given in the Hospice Directory
2004, published by hospice information. Back
2
Adult hospice figures taken from an analysis of hospice accounts
being undertaken by Help the Hospices. Children's hospice figures
are from the Association of Children's Hospices. Back
| 
