Sufferers fight funding threat (From Oxford Mail)

Sufferers fight funding threat

8:57am Wednesday 22nd November 2006 in News By The Page Turner

Sufferers of chronic fatigue syndrome were forced to drop out of a demonstration calling for more funding for carers because their condition made them too tired to attend.

About 10 chronic fatigue syndrome sufferers and their supporters met on Monday outside the Oxfordshire Primary Care Trust headquarters in Headington.

There are an estimated 2,600 sufferers in Oxfordshire, and the support group Omega (Oxfordshire ME Group for Action) fears grant funding for a team of occupational therapists and a physiotherapist will end in April.

Campaigner Patricia Wells, of Hayfield Road, North Oxford, who handed in a report to PCT bosses explaining why funding should continue, said: "There would have been more people at the demo but some of them telephoned me to say they had exhausted themselves making our banners and would not be able to make it.

"We cannot believe that the new primary care trust is even considering closing down the team that has at last brought hope to so many of us.

"The team is only funded until April 2007 and we are very worried about its future."

The project to help ME sufferers was set up in 2005 with £170,000, following a bid for funding from the Department of Health.

The service is aimed at patients who are too ill to access existing provision at local hospitals.

The funding pays for a specialist team to visit patients in their own homes.

Mrs Wells, a former Oxford Brookes University lecturer, added: "For over five years I lay in a darkened room, between 1991 and 1997, and I could not live a normal life.

"I lost my job and many of my friends - I do not want anyone else to go through that.

"My GP was marvellous but just did not know what to do to help me."

Helen Garfitt, a fellow ME sufferer from Oxford, whose daughter is also ill with the condition, added: "We were desperate. My daughter was bed-bound and I was too ill to take care of her.

"The team was instrumental in helping us cope and begin to recover. Children get CFS/ME too and it can hit them hard."

Melanie Proudfoot, a spokesman for Oxfordshire Primary Care Trust, said: "The Oxfordshire Community CFS/ME Team is a local multi-disciplinary team of part-time occupational therapists, and a physiotherapist, who work with patients suffering from chronic fatigue syndrome (CFS) also known as ME.

"This service was originally funded with 'extra' money allocated to the PCT by the Department of Health specifically to set up and run this project. The funding was for a short-term period of two years only.

"We understand that patients living with CFS/ME are anxious to secure continued funding for community services established in 2005.

"We are looking closely at whether or not we can continue to fund it from the PCT's budget when the initial funding runs out in April next year.

"The needs of this service will be considered as part of our annual planning and prioritisation process."