16 February 2012
In November, Action for M.E. issued Freedom of Information requests to all primary care trusts (PCTs) in England and their equivalents in Scotland, Wales and Northern Ireland to identify the current level of provision in the NHS for people with M.E./CFS.
Of the 128 PCTs and PCT clusters in England, 106 (83 per cent) have provided data or part data in response to our request.* But despite being required to by law, the following 14 PCTs have still not responded:
• Barnet
• Blackburn with Darwen
• Camden
• Enfield
• Haringey Teaching
• Hertfordshire
• Islington
• Liverpool
• Norfolk
• Northamptonshire Teaching
• South East Essex
• South Staffordshire
• South west Essex
• Southwark
In Scotland 11 out of 14 Health Boards have responded. Those who have not met their obligation to provide information within 20 days are:
• Dumfries and Galloway
• Grampian
• Western Isle
Sir Peter Spencer, Chief Executive, Action for M.E., says, “It is simply unacceptable that so many NHS organisations are unable or unwilling to tell us what services they provide for people with M.E., how many patients are being referred and how much they are spending on this patient group.
“We will not let them get away with this shoddy behaviour and will be vigorously pursuing the matter further.
“The results of our FoI requests are already revealing widespread failure to provide for the needs of people with M.E. as laid down in the National Service Framework for Long Term Conditions (2005), the NICE Guideline for CFS/M.E. (2007) and the Scottish Needs Assessment. (2011)
“We will be releasing additional results for all the home nations as they emerge. The data will enable local groups to enlist the support of their Parliamentary representatives and elected Councillors to challenge local decision makers and hold them to account.
“This dreadful illness has been neglected for far too long. Time for Action.”
Please add your name to our Time for Action campaign. Together, let’s end the ignorance, injustice and neglect of M.E., once and for all.
*We are still waiting for results from health boards and trusts in Wales.
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