In England more than one third of Primary Care Trusts (PCTs) either don't commission specialist services for ME/CFS patients or cannot confirm they do. In Scotland, Wales and Northern Ireland provision is far worse.
Action for ME., the UK's leading charity for people with Myalgic Encephalomyelitis (ME), produced a damning report, Ignorance, injustice and neglect, about NHS specialist services for people with ME but admits little has been done about improving situations.
The report was based on the results of Freedom of Information Act requests to all Primary Care Trusts (PCTs) in England, Health Boards in Scotland and Wales and Health and Social Care Boards in Northern Ireland and crucially uses the NHS's own statistics to expose failings.
ME, also known as Chronicle Fatigue Syndrome (CFS), is a chronic, fluctuating neurological illness affecting, to varying degrees, an estimated 250,000 in the UK.
Less than a quarter of PCTs commission specialist care in the home for those M.E. patients who are too disabled to travel.
Only 10% of PCTs could provide information on the numbers of children with M.E. that are treated in their patient population.
National standards and clinical guidelines are being ignored. 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."