This site is intended for health professionals only

Summit demands changes to motor neurone disease care

The government has today been urged to implement changes that will reduce the suffering of people with motor neurone disease - a rapidly progressive condition that kills more and more people each year.

Following a summit attended by HRH The Princess Royal, key figures in the field of end-of-life care and representatives from the three main political parties, a signed statement is being submitted to Andrew Lansley MP, Secretary of State for Health.

It contains recommendations for how to improve end-of-life and palliative care for people with MND and covers areas including funding, universal access, out-of-hours services and co-ordination of care.

Currently, end-of-life care for people with MND is largely inadequate and there is no national guidance on standards of care. While the average monthly cost to the NHS of caring for someone with MND is £16,500, the charity has found that when poor care is given it can cost up to £28,000 a month.

As well as putting a significant strain on the NHS, this situation can have a severe impact on the wellbeing of people with MND and their families. But it is hoped that the recommendations outlined in the summit statement will help to reduce the amount of suffering endured by people with MND and, in the face of huge spending cuts, deliver value for the public purse.

Baroness Ilora Finlay, Professor of Palliative Medicine at the University of Cardiff, is a patron of the MND Association. She said: "People devastated by a diagnosis of MND need to know they will get all they need. We know what to do for patients but unless the services are there on a 24/7 basis patients and their families will fear abandonment. We live in a seven day society and care must be there seven days a week."

Professor Tim Luckhurst, who lost his father to the disease last year, chaired the summit. He said: "Nothing in my life distressed me as much as my father's death. MND is a vicious killer that deprives active, intelligent people of the ability to walk, talk or eat.

"Many urgently need specialist palliative care and their families need support. This does not exist but it is not difficult to supply and must be an urgent priority for a compassionate government."

MND Association