In England, Wales and Northern Ireland, the National Council for Palliative Care (NCPC) is an umbrella organisation for all those who are involved in providing, commissioning and using palliative care and hospice services.
The Council's definition of palliative care as a part of supportive care is as follows: 'Palliative care is the active holistic care of patients with advanced progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments.'
Supportive care is designed to help patients and their families to deal with their condition from pre-diagnosis through to cure or chronic illness and finally death and bereavement. Much of the palliative and supportive care developed over the years has focused on patients with cancer but now the system is being extended across the whole range of illnesses.
Palliative care is typically available in care settings, such as a hospital, or in the community - in a hospice, care home or the patient's own home, for example.
Specialist medical staff in hospital are responsible for drawing up support plans for each patient needing palliative care. Staff may include physiotherapists, dieticians, social workers, doctors and nursing specialists. Their input may be the beginning of a plan, which extends into the community if it's decided the patient can go home.
Specialist palliative services are available to people living in care homes, in their own homes or in hospices.
For example, a patient may begin their care in hospital, go home and receive support at home (including day visits to a hospice or day centre) then become a resident in a care home or hospice. Respite care is also available in hospices to provide a breathing space for carers.
What services can you ask for?
Palliative services available include:
Whether you are the patient or the carer make sure that you tell the medical and social services staff what you need. Having the right support will make all the difference at a difficult and emotional time.
If your family or friends are not able to provide support on a daily basis because of commitments or living away, you may decide to employ suitable people to live in your home and take care of you.
This decision has to be an individual one. Before you or your family decides to make these arrangements, check what you may lose in free services available to you in your Clinical Commissioning Group or local authority area.
There are many agencies now providing such services and working in co-ordination with the NHS. Unless you or your family have direct knowledge of a particular one, make sure that you only use a recognised agency where all staff have experience, CRB (criminal records) clearance, and that you fully understand the fees charged by the agency.