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”.