ME sufferers in the Borders are not neglected, says medical director

BORDERS health chiefs have refuted claims that patients with chronic fatigue syndrome are being neglected.

Campaigners for sufferers say a recent survey of services for people with the illness, also referred to as ME, showed that only one of Scotland’s 14 health boards provided home visits for people with the debilitating condition.

And they are now calling for all of the country’s NHS managers to provide specialist secondary care for the 20,000 people in Scotland with the condition, many of whom are often unable to travel.

Campaigners allege that ME sufferers – many of whom are so exhausted they find it impossible to even leave their homes – are being discriminated against and neglected.

ME, or Myalgic Encephalomyelitis, is a long-term (chronic) fluctuating illness that causes symptoms affecting many body systems, more commonly the nervous and immune systems.

Many of those suffering from the condition experience persistent fatigue or pain in the muscles and joints and there can also be a range of additional symptoms.

These can include sleep disturbance, flu-like symptoms such as headache, sore throat, dizziness and nausea, and even problems with memory and concentration.

However, the condition can affect people in different ways and to differing degrees.

The charity Action for ME says without the specialist treatment they need, sufferers are often forced to spend a longer time off ill from work and are left to find their own ways on how best to cope with their illness.

The charity says it contacted every health board in Scotland to ask what services they provided to patients with ME and found that only NHS Fife employed a full-time specialist nurse to care for ME sufferers.

Three other health boards –Grampian, Tayside and Lothian – said they did not have specialist teams, but would consider using community nurses for this on a case-by-case basis.

Action for ME chief executive Peter Spencer said: “These figures are a disgraceful indictment of institutionalised discrimination and neglect.

“Health services are still not even beginning to address the needs of this vulnerable patient group properly.

“Rhetoric and prevarication from ministers is simply not good enough. We need action now to put this right once and for all.”

A spokeswoman for the Scottish Government said it recognised the condition as a serious illness and that it was committed to providing the best care possible for people living with it.

However, she said that, ultimately, it was up to NHS boards to plan and provide healthcare services that meet the needs of their local population.

Responding to the charity’s claims, Dr Sheena MacDonald, medical director for NHS Borders, told TheSouthern this week: “Within NHS Borders, patients with suspected ME are 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.

“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.”