Neurological conditions

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.

Prevalence

The number of people living in the UK with neurological conditions are reported by the specialist organisations as follows:

• Parkinson’s disease - 120,000
• Multiple sclerosis - 100,000
• Huntington’s disease - 6,500-8,000
• Motor neurone disease - 5,000
• Progressive supranuclear palsy - 4,000-10,000
• Multiple system atrophy - 3,000

The palliative care approach

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.

Quality requirement 9 concerned palliative care, and stated that 

People in the later stages of long-term neurological conditions are to receive a comprehensive range of palliative care services when they need them to control symptoms, offer pain relief, and meet their needs for personal, social, psychological and spiritual support, in line with the principles of palliative care

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.

Turning policy into practice

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.

What we know  

Access to specialist palliative care

A low level of access to specialist palliative care services for people with neurological conditions was reported in our Minimum Data Set report for 2009-10:

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.

Place of death

A recent review of death certification by the National End of Life Care Intelligence Network reported the following numbers of people dying in 2008 in England with a ‘mention’ of a neurological condition:

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.

The review revealed that the place in which a person dies varies largely on type of neurological condition he or she has:

• About half of people with a neurological condition die in hospital. This compares with national average of 58%.
• 3% die in a hospice. This compares with national average of 5%. (NB: This does not capture the hospice care the person may have received in the lead up to their death)
• 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.

Source: Deaths from Neurodegenerative Diseases in England, 2002 to 2008. (Nov 2010) National End of Life Care Intelligence Network

More information  

We have produced several publications, presentations and free downloads exploring the links between neurology, palliative care and rehabilitation.

Click here to see an overview of our work in this area

Most recently:

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.

Other useful organisations

Huntington’s Disease Association - www.hda.org.uk

MS Society - www.mssociety.org.uk

MND Association - www.mndassociation.org

Multiple System Atrophy Trust - www.msatrust.org.uk

Neurological Alliance - www.neural.org.uk

Neurological Commissioning Support - www.csupport.org.uk

Parkinson's UK (formerly Parkinson's Disease Society) - www.parkinsons.org.uk

Progressive Supranuclear Palsy Association - www.pspeur.org

Sue Ryder - www.sueryder.org