1. The College welcomes the opportunity
to submit comments on the issue of palliative care as part of
the House of Commons Health Committee Inquiry.
2. Given the new GP contract, continuity
of care in relation to palliative care will be reduced and out
of hours services will be taking on an increased palliative care
workload. This can be addressed if GP practices regularly communicate
details about their palliative care patients to the out of hours
provider and vice-versa. A mechanism may be required to facilitate
this using Dr Keri Thomas's almost national Gold Standards Framework.
3. A greater distinction needs to be made
between palliative care for cancer patients and non-cancer patients.
At the present time, specialist services are particularly skilled
in caring for patient with cancer, but sometimes have limited
capacity and skills to care for non-cancer patients. For example,
patients with progressive life-threatening illness who have entered
a terminal phase in the course of their illnesses. This needs
addressing both in postgraduate education for practitioners and
in resource issues regarding community palliative care practitioners
and increased bed capacity in hospices and hospitals. The Committee
is therefore urged to consider care and services for all life
threatening illnesses and take the opportunity to address the
current inequality of palliative care between cancer and non-cancer
4. Hospital care is still not prepared for
the needs of palliative care patients in many centres. A hospital
admission may be required as a hospice bed is not available and
care is no longer possible at home, for example due to a crisis
such as an acute medical problem where the patient lives alone
or the informal carer can longer cope or is ill. Ideally, each
hospital requires short stay designated units for palliative care
patients, so that patients are not kept in A&E departments
waiting for a bed and that there are designated doctors and nurses
with palliative care expertise available to provide their care
during and out of hours. For too long the NHS has relied on hospice
charities to provide this care.
5. A huge area that requires input and resources
is the need to support informal carers. An informal carer is a
person who is unpaid for providing health or palliative care for
a relative or friend at home. Many surveys show that people would
prefer to die in their own homes, rather than institutions such
as hospitals or hospices. However, being an informal carer is
a full time job, 24 hours a day, and often without a break. In
addition, it is both emotionally, psychologically and physically
demanding. Research funding is required to look at this important
group in greater depth and their needs and how they can be met
optimally. For example, can more resources be made available to
provide informal carers breaks and respite care? This also applies
to informal carers who look after loved ones with chronic illnesses,
such as stroke patients and those with multiple sclerosis who
are severely disabled. It should therefore not be limited to informal
carers who are looking after palliative care patients.
6. The need to provide palliative care to children
is fortunately rare for those working in primary care. But, when
it is required, specialist services are only able to provide for
the needs of adults except in a few centres. This needs to be
addressed nationally, to enable primary care providers to have
access to specialist advice and input as appropriate to care for
dying children at home.
7. A key issue to consider is the variability
in the distribution of the provision of palliative care. Research
in this area could be very illuminating and provide some real
evidence about those experiencing real difficulties in some areas
of symptom control and, for example, the extent of the discrepancy
between the proportion of patients wishing to die at home and
those who actually died at home.
8. Bereavement continues to be a neglected
aspect of palliative care. It is sometimes forgotten, that the
palliative care situation does not resolve with the death of a
patient, but continues for those loved ones who grieve. There
is much evidence in the literature of the increased morbidity
and mortality of those who grieve. At present there is no structured
input for them and what exists is sporadic and is often provided
by voluntary agencies. It is a neglected area of health promotion.
Again this is an area that needs further research and for example,
to ascertain the needs of bereaved employees in the workplace
and how they could be provided for optimally.
9. The issue of euthanasia is mentioned
in the inquiry. It may be worth recalling correspondence in the
medical literature which re-iterates the theme that if a need
for euthanasia is perceived, it is usually because the palliative
care being provided is inadequate and the input of a specialist
in palliative care may be appropriate.
10. Issues relating to ethnicity, older
people and spiritual needs are also important and should be considered
in relation to all the individual points mentioned above.
11. A continuing education programme is
required for primary care practitioners in specialist palliative
care so that more patients can be cared for at home.
12. This is also an opportunity to reduce
the divide between specialist and primary palliative care services
and to acknowledge that most of the relevant work is and should
be done in primary care, although the necessary resources will
need to be available.
13. We would also like to flag an issue
over boundaries which can cause problems for some who fall between
two authorities for some of their palliative care. This is where
some services follow the PCT boundaries and other services, eg
the MacMillan Nurses, follow local government services leaving
some people only with partial palliative care services. Our solution
is to require all palliative care services to follow PCT boundaries.