Our mission is to ensure that everyone gets the palliative care and support they need from diagnosis through to the end of life. This includes people with long-term neurological conditions.
Palliative care, combined with rehabilitation, can be beneficial for people and their carers from the point of diagnosis through to the end of life. It helps the person manage their condition and symptoms, and to maintain the best possible quality of life.
The National Service Framework for Long-Term Conditions (DH, 2005) outlined 11 Quality Requirements for people affected by a neurological condition.
Later the national End of Life Care Strategy (DH, 2008) sought to ensure that all people, including those with neurological conditions, could access the palliative care services they need and expect a good death.
NCPC has been working hard to ensure the implementation of these national initiatives on the ground. Guided by an expert group of professionals, charities and people with experience of neurology, rehabilitation and palliative care, we have surveyed the links that exist between these areas of care and identified solutions to current barriers for access to palliative care from extending. The group, which brings together the major neurological charities, also has an important role in identifying and sharing good practice.
The group is chaired by Vicki Morrey who is a trustee of NCPC and Director of Nursing at Trinity Hospice in Clapham, London.
This is based on data from 143 in-patient services (78%), data on diagnoses other than cancer from 130 (71%), and location after stay (including death) from 139 (76%).
It should be borne in mind that the MDS reports only on primary diagnosis, meaning that people who have a neurological condition as a secondary diagnosis and have accessed specialist palliative care will not be picked up in the collection.
These numbers are significantly lower than the prevalence numbers provided at the top of this page, owing to the limitations of information provided on death certificates.
About half of people with a neurological condition die in hospital. This compares with national average of 58%.
25% of Motor neurone disease / Multiple sclerosis deaths occurred at home, compared with 9% of people with PD who die at home.
One third of Parkinson’s disease / Huntington’s disease deaths occur in a nursing home.
We have produced several publications, presentations and free downloads exploring the links between neurology, palliative care and rehabilitation.
At any time of day and night? by Simon Chapman, Director of Policy & Parliamentary Affairs at NCPC writes in the British Journal of Neuroscience Nursing about the need for access to support any time day or night.