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Damning report on NHS specialist services

8 May 2012

Action for M.E. has produced a damning report, Ignorance, injustice and neglect, about NHS specialist services for people with M.E.

It is 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 Trusts in Northern Ireland.

Crucially, it uses the NHS’s own statistics to expose its failings.

Among the findings of the report are:

  • in England more than one third of Primary Care Trusts (PCTs) do not commission specialist services for M.E. patients or cannot confirm they do. In Scotland, Wales and Northern Ireland provision is far worse
  • 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 per cent 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 M.E. 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.”

As part of its Time for Action campaign, Action for M.E. is demanding the following:

In England, the Secretary of State for Health should take responsibility for ensuring that the care commissioning process in the UK is done properly for M.E./CFS specialist services.

As local commissioning has so evidently failed this patient group, special arrangements should be made by the new NHS Commissioning Board. The outcomes of these arrangements should be periodically audited to check compliance.

In Scotland and Wales, Governments should provide ring fenced additional start up funding immediately to implement the national plans they have already drawn up and make proper provision for full scale services as soon as possible.

The Northern Ireland Government should accept this report as another wake up call to engage with the patient groups and clinicians as a matter of greater urgency.

At the local level, members of national Parliaments and Assemblies, together with elected representatives in local Government should examine the information provided from their areas and hold to account those organisations that are failing their M.E./CFS patients so badly.

Have a look at our other news.


I was referred to the cfs/me clinic in Leeds for moderate to severe symptoms. At that time I was still well enough to travel the 50 miles round trip. After being under their "care"for 2 and a half years my condition had continued to deteriorate but the only "treatment"they offered was a phone call every six months. I am now housebound & bedbound. I think patients like me are just left to rot. I am presently funding my own specialist treatment despite having to live on disability benefits. I hope that the government are aware that millions could be saved in benefits if proper treatment was provided in the early stages
Victoria Reeves from Bradford.West Yorkshire, 16 May 2012 16:31
Primary Care Trust ( PCT)
I was referred to Kings College Hospital last year to the Chronic Fatigue Syndrone Research & Treatment Unit. I attended two appointments the last being in June 2011 with them telling me another appointment will be sent to me in a couple of months. I chased this up last week with CFS Unit as I have not had a follow up appointment yet ( 10 mths later) and was informed my PCT (Greenwich) would not fund my treatment so I am back to the beginning again and my Doctor does not know who to refer me to now, he has suggested as I am a Civil Servant I go to my work Occupational Health! But what do they know? everytime I have seen them the person asks me what is M.E? Kings College were very apologetic about not continuing their treatment for me. The NHS these days are a joke and I do not have faith with my GP either so i go on suffering, taking sick leave etc ............
Gillian Bowden from Sidcup,kent, 08 May 2012 11:46

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