Palliative care to help provide relief for people severely affected by multiple sclerosis is to be researched in depth for the first time. A three-year project being launched in London in April 2003 (details below) aims to set standards of good practice which could lead to the development of evidence-based services across the UK and abroad.
The Multiple Sclerosis Society has made a grant of £300,000 to the Department of Palliative Care and Policy at King's College, London. Additional funding is being provided by King's College Hospital NHS Trust.
Dr Polly Edmonds, consultant in palliative medicine at the Trust, is leading the innovative project. She said, "At the moment, people with MS and their families rarely have the opportunity to access specialist palliative care and we know very little of their needs. Members of the MS Society have suggested some people could benefit from this expertise.
"The project will be 'research in action'. A new team is being set up, combining neurology, MS and palliative care expertise. We shall look at currently available services for people with severe MS and identify what services they, their carers and health professionals think are necessary. We shall be identifying people with MS, in south-east London (Lewisham, Southwark, Lambeth, Bromley, Bexley, Greenwich) who might have palliative care needs and providing them with specialist assessment and care.
"We shall also be setting out to improve their access to therapies, counselling and spiritual support as well as social services. As we learn from the project, we shall be educating health care professionals, carers and the patients themselves in meeting their needs."
Said Mike O'Donovan, chief executive of the MS Society, "The Society is very pleased to have led the way to research which breaks new ground in MS care. Palliative care has been proved to be of immense value in the management of other advanced and long-term conditions. We hope this project will help us develop similar support for the many people living with the complex and distressing symptoms and problems of severe MS."
Health professionals and commissioners are being invited to the launch of the project at Goldsmiths College, London SE14 on Friday 11 April 2003.
It will be chaired by Professor Alan Thompson, professor of clinical neurology and neurorehabilitation, Institute of Neurology, Queen Square, London, and Paul Burstow MP, a member of the All-Party Parliamentary Group on MS.
As well as Dr Polly Edmonds, speakers will include:
© Copyright 2003, Multiple Sclerosis Society