Sufferers with ME criticise NHS

SUFFERERS from the disease ME – or chronic fatigue syndrome – have come forward to refute claims by Borders health bosses that those with the condition are not being neglected when it comes to home visits and care services, writes Mark Entwistle.

Earlier this month, TheSouthern reported allegations from the Action for ME charity that local ME sufferers and those in some other health board areas of Scotland were being discriminated against and neglected.

Not so said Dr Sheena MacDonald, medical director for NHS Borders,who told us that within NHS Borders, patients with suspected ME were referred by GPs to a variety of services, including local neurology services and tertiary virology services.

“While we do not centrally record the diagnosis of patients receiving domiciliary services [care in their home] in relation to ME, it should be noted that NHS Borders does not consider ME any different than other conditions,” Dr MacDonald had explained.

“This means that all patients are individually assessed against set criteria to see if they require a home visit and patients who meet the criteria will receive these visits if needed.”

But one Borders sufferer, who asked not to be named, said she did not recognise Dr MacDonald’s description of the services available, based on her own experience of coping with ME for almost a decade.

Citing a litany of requests for certain services which she claimed were halted after just a handful of sessions or that she was told were either not available or not worth pursuing, the 33-year-old woman told us: “Could you maybe ask [NHS Borders] why patients are left to suffer long term when help could be made available?

“It seems to be purely financial reasons as to why many NHS services are not provided. I understand that not everything can be treated but it would be good if I could give things a shot so I can see if I feel better.

“Anything so I can have a normal day like everyone else. I know I am not alone in the way I have been treated by NHS Borders and I do not think it is entirely confined to ME sufferers.

“Many people with many different illnesses will be going through the same fight just to try and feel better. The only thing I feel is ME needs positive publicity and to raise awareness of the illness as it is still so misunderstood by everyone, including the medical professionals. We just want people to believe us.”

Another, a 46-year-old man who now lives in Hawick, says he is desperate to return to living in England where he says ME sufferers receive better care.

“I’ve had a very mixed response from the health services since I’ve been living in the Borders. I like the Borders and the people are really nice, but I’ve found that people here in the health services, for most part, know very little about ME.

“And reading the recent response from NHS Borders in TheSouthern, I didn’t know such services were available. I’ve certainly never had them.”

Asked this week for her reaction to the comments from local sufferers, Dr MacDonald, said patients were treated, regardless of diagnosis, within NHS Borders as equitably and fairly as possible and that treatment is planned on an individual basis.

“In common with other small health board areas, and by necessity some patient treatment may be delivered from the neighbouring health board – Lothian Health Board in our case,” she said.

“We cannot comment on individual cases but would encourage patients to feed back individually if they have concerns about the quality of their care.”