Memorandum by Cotswold Care Hospice (PC
Cotswold Care is an independent hospice founded
in 1990 to serve the southern part of Gloucestershirea
population of over 200,000 inhabitants in a mainly rural area,
with the towns of Stroud and Cirencester as major centres.
The hospice provides day care, hospice at home
service, outpatient and complementary therapies, and a family
support service which includes counselling to patients and their
families and bereavement counselling. We also provide education
and training to the communityprimary health care teams,
nursing homes, community hospitals and social servicesand
a strong forum for network working within the palliative care
field, for both generalist and specialist services.
We would like to submit our following comments
and suggestions to the Parliamentary Inquiry on Palliative Care:
1. Palliative Care is still viewed as a
sub-section of Cancer Care Services, despite the broader definition
put forward by the World Health Organisation and adopted by the
Department of Health. The NICE guidelines support the latter and
we would suggest that Palliative and Supportive Care is given
greater prominence in its own right, to reflect the work done
by independent hospices for example. In the first instance
we would suggest that palliative care is listed as a service in
the listing on the Department of Health websiteand not
under "Cancer" as it is now.
2. We would like to outline the lack of
community resources, both health and social, which impacts
on the implementation of the NICE Guidelines for services provided
nearer to patients' homes and which seriously restricts patients
choiceincluding place of death. It is our view that too
much emphasis is given to the acute services and to consultant-led
services, without due recognition to services provided by generalist
and specialist palliative care services outside an acute setting.
We would suggest that the Health Committee reviews the national
and local palliative care strategies and funding arrangements,
to ensure that priority is given to community services.
3. The current definition of "specialist"
palliative care services is restricted to services which have
a regular input from a consultant. Notwithstanding the scarcity
of consultants around the country this definition does not appear
to recognise the expertise and skills of people working in the
fieldand who have therefore developed their own specialist
skills. We would therefore suggest that the Inquiry looks into
a fairer access to consultant time for all services, whilst at
the same time re-visits the definition of a "specialist"
4. There appears to be "Cinderella"
services within palliative care and we would suggest that the
Inquiry looks into services such as lymphoedema services in the
5. Specialist palliative care services,
including hospices, provide comprehensive training and education
programmes which support all health and social services in the
provision of palliative care. However these programmes are severely
compromised by the lack of resources to release staff to
attend and the lack of funding in some instances to enrol
on these programmes. As a result staff's knowledge and skills
in palliative care are eroded and this may have a direct impact
on inappropriate admissions to hospitals. We would suggest
that the whole issue of education and training is looked at as
a priority by the Workforce Confederations independently, to help
co-ordinate a more strategic approach.
6. As a charity the hospice is faced with
an ever increasing amount of regulation which are onerous, both
in terms of finances and human resources. Whilst we welcomed the
National Minimum Standards for Independent Health published by
the Secretary of State, the additional administrative burden created
by the National Care Standards Commission (NCSC)'s inspection
process could have been avoided by a more timely and sensitive
approach. Hospices have had to produce policies regulating every
aspect of their work, in some cases for the sole purpose of "ticking
the box" when the inspection took place. Hospices who adopted
their local NHS policies have in some cases been penalised as
the NHS policies were judged as out of date by the inspectors.
At the same time NHS palliative care servicesor general
services providing palliative caredo not seem to have been
subjected to the same scrutiny of a care standards inspection.
We would suggest a partnership approach in the future, when
statutory and voluntary organisations can work together, within
an agreed framework, towards meeting national standards and regulations.
7. The registration cost to various bodies
is becoming a burden to small charities, £1,000 and over
per annum for the NCSC and a suggested cost of £300 for registration
to the Criminal Records Bureauremembering our obligations
to maintain the professional registrations of our clinicians.
We would suggest that registration fees are waived for charitable,
not-for-profit organisations as they already contribute to the
wealth of the community by providing a free service to patients
and their families and subsidise indirectly the National Health
8. The statutory funding of hospices remains
un-equitable throughout the country and does not appear to be
based on any "scientific" or planned approach. The position
adopted by this hospice is that we would not seek funding from
the NHS above the 30% markour current funding is 19%as
a higher level of funding would jeopardise our independent status.
However it is unacceptable that access to statutory funding is
made so difficult by late notification of funding available,
complexity of application forms, necessity of local
NHS services' approval (when they might themselves be competing
for the same funding with little, if any, inclination to work
in partnership with the voluntary providers). We would suggest
that the Health Committee looks at the funding process for palliative
care services, ensuring a fair and equitable access to all funding
made available centrally. The Committee should remember that the
local NHS Trusts are both providers and commissioners of
services in most instances, hence in a difficult situation to
make objective decisions on the distribution of scarce resources.
9. Our final comment concerns the understanding
of the term "partnership" at the local level. Whilst
we appear to be able to develop excellent partnership/collaborative
work at the operational levelwith GPs, district nurses,
front line managersthe partnership remains no more than
wishful thinking once we reach the levels of decision making,
funding allocation and strategy development. Partnership does
not work when we come to competing for scarce resources and we
would refer to our comments above with regards to health authorities
which are both commissioners and providers of services. We
are aware that the degree of partnership/collaborative working
may vary from health authority to health authority, but unless
it is ingrained into the day to day thinking/working of the National
Health Service (or any other statutory agency, as suggested by
the Government's Compact) the palliative care agenda will remain
driven by the NHSand in most instances by the acute,
consultant-led intereststo the detriment of a more
holistic approach to the delivery of care. We would suggest
that the Inquiry looks at the way partnerships are forged at the
local level, the composition of Network Boards for example, and
the degree of partnership/collaborative working at the decision
making level. We would further suggest that the Health Committee
looks at issuing clear guidelines on expected standards in partnership/collaborative
workingand establish the means to monitor this working.
20 February 2004