From Telegraph.co.uk, 8 May 2012 (story by Christopher Hope, senior political correspondent).
Fewer than one in three health trusts is providing adequate care for chronic fatigue syndrome sufferers, new figures suggest.
The study uncovered a postcode lottery in the way that people with ME, or Myalgic Encephalomyelitis, were treated, with large variances in treatment across the UK.
ME is a long-term chronic illness which attacks people’s nervous and immune systems and affects 250,000 people in Britain.
The National Institute for Clinical Excellence gives all 151 primary care trusts in England explicit guidance on how children and adults with ME should be treated.
However a Freedom of Information survey of trusts and health boards in the UK found that this was largely being ignored.
Only 15 of the trusts – fewer than a third of those in England which responded to the survey – offered a specific “pathway” to getting sufferers the right treatment.
A similar problem was in other parts of the UK, with half of Scotland’s health boards and no Welsh health boards offering health pathways for ME sufferers.
The survey – published today in a report “Ignorance, Injustice and Neglect” from the charity Action For ME – also found that 37 out of 151 trusts provided some sort of domiciliary care and only a third of those provided figures about how many were treated.
Only one Scottish, one Welsh and one Northern Irish health board offered home visits for ME sufferers.
The study also found that the provision of care for children with ME is far worse than for adults, despite the devastating impact this can have on their schooling.
Only 10 per cent of primary care trusts could provide information on children with ME being treated.
Action For ME, the charity for ME sufferers, said “clear requirements and standards” for sufferers “appear to be largely ignored”.
Sir Peter Spencer, the charity's chief executive and former Second Sea Lord, told The Daily Telegraph: “These figures are a disgraceful indictment of institutionalised discrimination and neglect.
“Rhetoric and prevarication from ministers is simply not good enough. We need action now to put this right once and for all.
“Health Services in all of the four home nations are still not even beginning to address the needs of this vulnerable patient group.”
The charity said Health Secretary Andrew Lansley should take responsibility for ensuring that the care commissioning process is done properly.
It also said that special arrangements should be made by the new NHS Commissioning Board because local commissioning had “so evidently failed this patient group”.
Annette Brooke MP, chairman of the All Party Parliamentary Group on ME, said the report painted “a stark picture of neglect as evidenced by their failure to plan or provide for even the most basic services”.
The situation is even worse than reported.
At least one health authority has a ‘care pathway’ but nobody uses it, and the claimed referral system is a sham – one consultation with a disinterested ‘specialist’ and you’re shown the door.
Time PCTs, etc were made to substantiate their claims.
I may be wrong I have a real problem here because ME is not recognised as a real illness many of these clinics are dominated by Psychiatry . I cannot see much point in promoting or supporting services which promote CBT or GET
My daughter has ME, she is only 16, now i have been accused by Social services that i promote or induce illness on my daughter … with all that brings child protection registration, how does this happens??? she doesnt want to be ill, i dont want her to be ill, i would trade my life to have my healthy girl back, not a teen who cant enjoy being a teen, going out with friends … how does this system works??? she should have support not ignorant people calling her a liar …
The NHS in Wales is developing a care pathway but, until that has been completed, most of us will continue to be ignored.
I hate to be negative here but…
Every person -regardless of their illness deserves the right to appropriate medical treatment and support. They also deserve to be treated with respect by the medics, social services and DWP.
Current wisdom dictates CBT and GET. While the system will grudgingly believe those of us with ME/CFS are unwell (or at least that we believe we are) they refuse to believe us when we explain that these treatments make the majority of those who tried them worse and that it may not always be possible for a patient to recover from this treatment.
In my personal opinion, at best, you will get well intentioned NHS employees who believe you are ill and are powerless to help you beyond advice that is already available through the ME Assoc.. At worst….CBT and GET delivered by those who refuse to believe that you are ill and who feel that your only possible hope for recovery is if they can convince you that you are not ill and push you beyond what you believe to be your limitations.
From personal experience being ignored and neglected is awful and shouldn’t happen – being bullied, judged and villified is worse. Something needs to change, but the last thing we need is more of the same.
Be careful what you wish for…