Palliative care teams must think beyond cancer to help people with MND

01 December 2006

Palliative care needs to move beyond simply providing end-of-life care for cancer patients, so that it can meet the needs of people with Motor Neurone Disease and other terminal illnesses.

That was the message from today’s session on palliative and end of life care at the 17th International Symposium on ALS/MND in Yokohama, Japan.

Julia Addington-Hall, from the University of Southampton in the UK, told delegates that addressing the needs of non-cancer patients who need end of life care presented a number of challenges to palliative care teams, and other health and social care professionals.

One of these was the perception that palliative care is only about “death and dying” and should only be involved when someone is approaching the end of their life.

Prof Addington-Hall said: “I think there is a very good case for palliative care need in ALS [the most common form of MND] and that palliative care has something to offer here.

“But at the moment, access to palliative care for ALS is not always there. It varies between countries but it also varies within countries. In the UK, some patients and their families get an excellent level of care. But I was very shocked when I moved within the UK, to another part of the country, to find that none of the services locally accepted referrals for ALS patients.”

Prof Addington-Hall said good palliative care for people with MND should involve end of life care and decision-making, but also symptom control, promoting meaning and maintaining hope in the patient’s life, and supporting families.

She said education of health and social care professionals, including palliative care specialists, was one way to improve things, along with better joint working between these disciplines, lobbying to improve funding, sharing good practice and undertaking research.

The need for improved palliative care for people with MND was further explored by Dr David Oliver, from the Wisdom Hospice in the UK. He said a collaborative approach was needed between palliative care service providers and neurology and rehabilitative services.

Sarah Fitzgerald, Head of PR and Media
+44 (0)1604 611840
sarah.fitzgerald@mndassociation.org

The 17th International Symposium on ALS/MND is taking place in Yokohama, Japan, between Thursday, 30 November and Saturday, 2 December. The event is organised by the UK-based Motor Neurone Disease (MND) Association and hosted this year by the Japanese ALS Association (JALSA).