• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Fewer than 1 in 3 health trusts offering adequate care for ME sufferers

Ember

Senior Member
Messages
2,115

Fewer than one in three health trusts is providing adequate care for chronic fatigue syndrome sufferers, new figures suggest.


By Christopher Hope, Senior Political Correspondent

08 May 2012

http://www.telegraph.co.uk/health/9...-offering-adequate-care-for-ME-sufferers.html

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 peoples 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 Scotlands 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.
 

Enid

Senior Member
Messages
3,309
Location
UK
That is interesting Ember - recognition of ME by the Telegraph at last. Good for them ! Makes up for one particular Doc joining the media circus last year in promoting CBT.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Thanks Ember for posting. I live in Wales where there is NO provision at all for any M.E patients. My Gp hasnt made a managment plan and despite at some points being severely ill i never had a home visit. Even now i find it takes months to organise a visit to the GP - then it never seems worth it!

Good on the Telegraph - do you have a link - are they taking comments?
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
So sorry Ember - duh! can see it now. My fault for having a defecftive brain.
Justy
 

Calathea

Senior Member
Messages
1,261
I'm too tired right now to go through the process of registering to comment on the Telegraph, but frankly this sounds like it is making the situation seem much better than it really is. For starters, the "right treatment" they describe is not actually helpful for the vast majority of ME patients, and is more likely to make them worse. There are no health boards which are out there curing even a decent percentage of ME patients, and probably none which are even managing to halt the condition through symptom management for more than a tiny minority. As for home visits, it neglects to mention that this is only home visits from GPs - if you need to see someone at a hospital, you are sunk. There is no discussion of the deaths, or even of the severity of the condition. For an article like this, this is downright misleading, as it implies that the worst that could happen with ME is that your schooling could be a bit disrupted if you're a child. Children at least have guaranteed carers, adults don't and can end up deteriorating appallingly through lack of care in the home. The bit about the "right treatment" is making me wonder whether it's worth taking to the Press Complaints Commission - do you think it's provable that it's inaccurate?
 

Enid

Senior Member
Messages
3,309
Location
UK
I did make a point on comments (whilst recognising ME is at last accepted in the Telegraph as opposed to the "you are all wrong" previously) to the effect of the history of disbelief in the UK and the research and findings over many years by Docs and Scientists internationally now resulting in understanding the underlying pathologies and medical treatments being prescribed. Nothing like that in these parts.
 
Messages
13,774
I'd much rather have no 'care' than be placed under the authority of people like Esther Crawly and Peter White.

Crawley trying to claim PACE showed a recovery rate of 30-40% for CBT/GET seemed to be the start of their campaign for them to keep being given lots of money, despite their actual results and the growing disinterest in the NHS for placebo treatments like homoeopathy etc. Sad to see that Action for ME seems to be joining in this game.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
AfME has always been "part of that game" - and the only treatment they recognise is CBT and GET.
They're behind the Scottish Guidelines being held up for a year to get watered down to include the nice garbage.
 

Min

Guest
Messages
1,387
Location
UK
letters to the editor can be sent to:

dtletters@telegraph.co.uk


and should include full address and phone no.

AfME are unfortuantely a huge problem for us in the UK as they work closely with the Wesselyites, as they did on the PACE trial