Chronic fatigue patients ‘left home alone’ in Sussex

A MAN suffering from chronic fatigue syndrome said people with severe cases had to deal with it on their own due to underfunding.

Colin Barton, chair of the Sussex ME Society, said home visits are needed for people confined to bed by the disease as many currently rely on family and friends to get everyday tasks done.

He said they were “chronically overlooked” by the NHS in Sussex, which provides “fantastic care for mild and moderate” cases at the Princess Royal Hospital on Haywards Heath, but “nothing at home”.

Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is a long-term condition with many symptoms, the most common of which is extreme fatigue.

The Argus: Princess Royal Hospital, Haywards HeathPrincess Royal Hospital, Haywards Heath

“These are people who are housebound,” said Colin, who lives in Brighton.

“Some of them are bedridden. The services at Haywards Heath are fantastic but they only deal with mild to moderate cases.”

Home visits are not currently available for those unable to attend a treatment center, which Colin says needs to change.

ME affects around 4,000 people in Sussex, of whom around 20 per cent are housebound.

Colin, 71, founded the Society in 1987 after being diagnosed with ME that same year.

“I wasn’t very happy,” he said.

“But over time you get used to it, you live within the limits. I need to avoid stress, but I’m a lot better than I was.

“There was so little support for people with ME in the area at the time.”

The Sussex ME Society is promoting new guidelines for healthcare professionals issued by the British Association for CFS/ME (BACME).

The report covers all aspects of chronic fatigue syndrome, from diagnosis to care, and addresses Colin’s call for home care.

The Argus: Colin was diagnosed in 1987Colin was diagnosed in 1987

“Service providers should be proactive and flexible in providing services to people with severe or very severe ME/CFS, who may have particular difficulties accessing services and articulating their needs,” the report says.

“This could include home visits, online or telephone counseling, providing written communications and supporting their requests for aids and aids.”

In exceptional cases of ME/CFS, a person may experience severe and persistent pain, hypersensitivity to light, extreme weakness, reduced ability to speak, and many other symptoms.

University Hospitals Sussex, which runs the Princess Royal Hospital, has been contacted for comment. Chronic fatigue patients ‘left home alone’ in Sussex

Fry Electronics Team

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