PATIENTS with chronic fatigue syndrome (CFS) are still suffering from neglect within the NHS despite initiatives aimed at improving services for those with the condition, according to a new report.
A survey of services for the estimated 250,000 people in the UK with ME - myalgic encephalomyelitis - or CFS - has shown more than a quarter of primary care trusts (PCTs) do not commission specialist secondary care for people with the condition.
Less than a quarter of the trusts said they provided home visits for ME patients who are too disabled to travel.
The statistics were compiled by the charity Action for ME using Freedom of Information requests to 151 PCTs in England, 14 health boards in Scotland, seven health boards in Wales and five local commissioning groups in Northern Ireland.
The findings were compiled from responses or part responses received from 143 PCTs, 11 Scottish health boards, six Welsh health boards and three health and social care boards in Northern Ireland, the charity said.
It added that it had reported six PCTs and one Scottish health board to the information commissioner over their failure to respond at all to the questionnaire.
Only 37 PCTs, along with one Scottish, one Welsh and one Northern Irish board said they provided home visits for people with the condition.
The charity described the situation in England as "profoundly depressing’’ given a series of initiatives and repeated assurances from ministers in successive governments that the needs of ME patients would be addressed by local care commissioners.
In Scotland and Wales statements of good intent have been made by each of the governments but so far there has been no evidence of implementing any significant initiative to provide "appropriate’’ secondary care for patients, the report said.
The study added that progress in Northern Ireland "lags well behind’’ and the NHS has not yet "even grasped the scale or the seriousness’’ of the impact of ME on patients and their families.
The illness, classified as a neurological condition by the World Health Organisation, has a range of symptoms including fatigue, malaise, headaches, sleep disturbance, difficulties with concentration and muscle pain.
Up to a quarter of patients are so severely affected that they are unable to leave their homes or their beds for prolonged periods which can last for years.
The charity's report said there was "gross under-provision’’ for specialist care for ME or CFS patients throughout the UK and a post code lottery for these services.
There is also widespread failure to provide specialist home services that are needed by the most severely affected patients, the report noted.
Action for ME chief executive, Sir Peter Spencer, said: "These figures are a disgraceful indictment of institutionalised discrimination and neglect.
"Health services in all of the four home nations 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.’’