Health leaders accused of ‘burying’ report on ME care

August 17, 2008

From the Edinburgh Evening News, August 16

A support group for people with chronic and debilitating fatigue has accused NHS Lothian of "burying" a report that criticises the way sufferers are cared for within the health service.

The report, compiled by Edinburgh South Community Health Partnership patient involvement worker Anne-Marie Comber and Liz Simpson, senior health promotion specialist at South Central Edinburgh Local Health Partnership, is yet to be published despite being submitted in full to NHS Lothian over three months ago.

Based on the results of a survey of patients with ME and Chronic Fatigue Syndrome (CFS), the report suggests patients feel misunderstood and abandoned by health and social care professionals, and are unfairly stigmatised by a "disbelieving culture".

Frustrated by the continuing delays, Edinburgh ME self-help group Edmesh has published the report – entitled ‘Believe in ME' – on its website in the hope that it will force NHS Lothian to speed the process up. A message on the website reads: "We are very concerned that the important information and recommendations in the report should not be buried. We very much hope that the report will be officially published by Lothian Health as soon as possible; and will be widely distributed to health and social care professionals as promised."

ME and CFS, often described as "yuppie flu", is characterised by feelings of severe and debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances, poor memory and lack of concentration. The

symptoms are often found in individuals who have had bouts of serious illness, and it is also sometimes known as Post-Viral Fatigue Syndrome.

However, most people surveyed said that people often refused to believe they were ill, that they were "putting it on", and many said that if the symptoms didn't force them to give up their jobs then the scepticism from employers effectively forced them to resign. Moreover, reactions from their GPs ranged from "supportive but seeming slightly helpless" to "patronising, dismissive and generally lacking empathy".

The report recommends ME should be taken seriously from the start and advice should be given as early as possible on how to manage and cope with symptoms. But the report is yet to be implemented by NHS Lothian, leading to accusations that the health service is dragging its feet.

Edmesh volunteers have been kept in the dark regarding the progress of the report, and have been told that as there was no-one at NHS Lothian to take a lead on the report it was not likely to be published any time soon.

Jackie Sansbury, director of strategic planning and modernisation at NHS Lothian, said: "We are entirely relaxed about Edmesh placing the draft report  on its website. Indeed, we will be putting it on our own website and we are already in the process of arranging this to take place within the next few  days. Unfortunately, any delays have been due primarily to changes in  personnel. We are planning to undertake a comprehensive review of ME services  in Lothian and we welcome this report which we believe will be informative  and will form part of that review."

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