27 February 2012
Information provided under Freedom of Information legislation has revealed that 66 per cent of Primary Care Trusts in England do not yet have defined care pathways for patients with M.E.
In 2007, the National Institute for Clinical Excellence (NICE) issued a guideline which recommends establishing a clear patient pathway for M.E. patients with explicit guidance on when children and adults should be referred to specialist clinics and emphasising the importance of early diagnosis.
As long ago as 2005, the National Service Framework for Long-Term Conditions stressed the need for "fully funded NHS continuing care and adult social care in line with national guidance to meet the needs of people with long term neurological conditions."
These findings follow on from statistics released earlier about PCTs which spend nothing on funding specialist services for M.E. patients during 2010/11.
Action for M.E. Chief Executive, Sir Peter Spencer, said: “People with M.E. will not be at all surprised by what our FoI requests are revealing.
"I would stress that the importance of these figures is that they are not ours. They are not the result of another survey of patients that can be dismissed the NHS as being unrepresentative, as has happened too often in the past.
"These figures come from the so-called care commissioners themselves. They cannot dodge the fact that they are simply not providing for the needs of this patient group and in most cases are not even planning to do so.
“Once again, these figures illustrate just one of the major issues that led to the Time for Action campaign being launched by Action for M.E. to end the ignorance, injustice and neglect faced by Britain’s 250,000 people with M.E. once and for all.
“We are urging people to add their names to the Time for Action campaign and to persuade as many other people to do the same so that we can build the momentum necessary to make a difference.”
In November last year, Action for M.E. sent 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.
Of the 128 PCTs and PCT clusters in England, 106 (83 per cent) have provided data or part data in response to our request.* In Scotland, 11 out 14 health boards responded.
Action for M.E.will be chasing up those who have failed to comply with their legal duty to respond.
We will be publishing more findings over the coming weeks, including a more detailed look at responses from Scottish health boards. A full report will be published later this year.
Sir Peter added: “These figures are early indicators, however, what the large majority of health service commissioning bodies have already demonstrated is their complete failure to even try to understand and meet the needs of people with M.E. throughout the UK.”
* We are awaiting data from Wales and Northern Ireland
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