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 sufferers.

  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.

February 2004