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Letter in The Times re ME and NHS reforms

Discussion in 'Action Alerts and Advocacy' started by Jenny, Mar 8, 2011.

  1. Jenny

    Jenny Senior Member

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    http://www.meassociation.org.uk/?p=4978

    Letter to The Times: fears for ME patients in the new NHS, 7 March 2011
    by tonybritton on March 7, 2011
    From The Times letters page, 7 March 2011

    ME patients at risk from NHS reforms

    Sir, In 2010 the All-Party Parliamentary Group on ME inquiry into NHS service provision for CSF/ME found unacceptable variations in access to hospital-based services. It also found major failures to meet the needs of children and the most severely affected patients. Placing the power to decide priorities for healthcare provision in the hands of GPs can only make matters worse for this vulnerable and greatly neglected group. As the inquiry found, many GPs do not recognise ME and some even deny it exists.

    The NHS that is being proposed would lead to a parochial and fragmented approach to services. There appears to be a continuing reluctance to do anything about local funders, commissioners and service providers when they are failing certain groups of patients with chronic conditions and, with the dismantling of the Strategic Health Authorities, there is no body to monitor regional and supra-regional services, nor is it clear who will monitor the care provided by GPs.

    Many patients have expressed deep concerns about the effects the changes will have upon their community. There has been no consultation with them or their representatives. They simply know that the new NHS could well be a disaster for them and fear that they will fall through the net when providers compete for the more lucrative services.

    COUNTESS OF MAR
    Chairman, Forward-ME
    DR VANCE SPENCE
    Chairman, ME Research UK
    SIR PETER SPENCER
    Chief Executive, Action for ME
    DR CHARLES SHEPHERD
    Hon Medical Adviser, ME Association
    JANICE KENT
    Director, reMEmber
    MARY-JANE WILLOWS
    Chief Executive, AYME
    TANYA HARRISON
    Chairman, BRAME
    .From → News

    .One Comment Eleanor permalink
    Thanks to all of you!

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  2. Enid

    Enid Senior Member

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    Thanks for posting Jenny - pretty much sums up the position. GPs not recognising or denying also sums up the position here in Kent. One really feels that GP re-education is one of the most important issues - that being the first stumbling block.
  3. Bob

    Bob

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    I can't help thinking that these signatories are deluding themselves that there is a health service for ME patients at all anyway.
    In my local region (sussex), there is nothing on offer apart from a 10 session group therapy course of GET which, as the PACE Trial just demonstrated, provides very little in the way of symptom relief (a subjective 11% reduction in fatigue using the Chalder scale), with only 40% of patients reporting that it provided any help to them at all.
    You have to be able to get to the hospital by yourself in order to receive the GET, and if you can't then there's no treatment available whatsoever, apart from what your GP can offer.
    People who are severely ill (i.e. housebound or bedbound), are looked after only by their GP's anyway, and GET (the only thing on offer from the NHS) isn't at all suitable for severely ill patients anyway, as proved by the FINE Trial.
    According to the PACE Trial, GET and CBT aren't effective treatments for any ME patients, and only offer some patients any help, and that's with the questionable methodology and statistical jiggery pokery that they used to make the study look better than it was.
    So what world are these signatories living in?
  4. Angela Kennedy

    Angela Kennedy *****

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    Yes, Bob, I'd have to agree with this analysis.
  5. Enid

    Enid Senior Member

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    Can't quite agree with foregoing - we sufferers are at the "rock face" - meet and experience the total failure of UK medicine for ME. This they know and "slugging it out" aint no good - just reason and better knowledge and their persistance - so thanks to the signatories.
  6. Mark

    Mark Acting CEO

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    That's the way I see it too. Yes the Tory 'reforms' are going to be a sustained attack on the sick and disabled, and those of us who've managed to get disability benefits will come under attack that way. But as far as NHS health services go, have we really got anything to lose?
  7. cigana

    cigana Senior Member

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    I appreciate the sentiment, but I think we know that the NHS is already a disaster for us.
  8. Bob

    Bob

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    Just to clarify my earlier message... I'm not ungrateful to the signatories, but I don't think they are addressing the issues that need addressing. I believe that they should be asking for real treatments for ME on the NHS, and not asking for a balanced distribution of pseudo psychological interventions, across the NHS, which have now been proved to be ineffective.



    Answer = No
  9. Enid

    Enid Senior Member

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    Bob - the psychobabble is what they are fighting against knowing more of the disease process than the present establishment here. 11 years and no NHS myself is something I had/have to live with. Of this they are aware.
  10. Bob

    Bob

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    Enid, I'm not certain that is true for all the signatories.
    Action for ME have never strongly opposed the NICE guidelines, and I believe that AYME has a bad track record in terms of promoting questionable psychological interventions. But I do have a lot of respect for some of the signatories, so maybe my comments have been unfair to them.
  11. Enid

    Enid Senior Member

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    Stick with 'em Bob - much changing of positions (needed by some) going on. The sheer numbers affected world wide will carry the day.
  12. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    NHS is not merley no use, it's actively HINDERING any help for us.
    WHy ban ollow up MRI/SPECT scans?
    Why no disicplnary action against those who denied M.E. existance or refusal to respect patients as their Oaths and regulations specify
    etc.

    been on the reciveing end of outright sh*t and medical wrongdoing from ratbags too often in the NHS for it to anything other than endemic and/or deliberate culture of abuse
  13. Bob

    Bob

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    That's another reason why i think the signatories in the letter are barking up the wrong tree...
    If GP's are empowered to treat us in any way they see fit, and if we are allowed to choose our GP's, then we might end up with something similar to the Canadian system where we might get expert GP's who specialise in certain areas, such as ME. These GP's might be able to order MRI and SPECT scans for us if they thought that they were appropriate to our illness, depending on how the system is set up. It all depends on how the system ends up working, but it could actually go in our favour, even though, in a broader sense, I can't see the proposed system of semi-privatisation working successfully. Actually, I think it will be a totally disastrous reorganisation, unless it's very carefully planned over a number of years with a lot of patient consultation.
  14. Enid

    Enid Senior Member

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    Quite agree Bob - we have so much medical "culture" to change - from 11 years ago sitting with much difficulty in a Practice of 5 who missed my own Hypothyroidism beginnings lost the plot. And yet in my family a Prof Neurology (US) who tells me this undiagnosed leads to/indicates other problems. GPs need re-education.
  15. Bob

    Bob

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    My GP missed my hypothyroidism as well... He had the blood test readings in front of him, but didn't pick up on them to treat it (didn't he notice them, was he incompetent or didn't he care? i don't know)... A year later, after a lot of symptoms had become obvious, I diagnosed myself and finally got treated... And GP's are going to be in charge of our entire health programs? Scary! In my experience, GP's are often next to useless.
  16. Enid

    Enid Senior Member

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    Know it all well Bob and the failure in my Practice was apparently sent back to school (he now apparently is the Wiz Kid in this). Another example of how the medics will stick together to protect not patients but themselves.
  17. garcia

    garcia Aristocrat Extraordinaire

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    Actually I thought you were spot-on Bob.

    This bit particularly irks me:

    What services??? There is no service. That is the problem!
  18. Enid

    Enid Senior Member

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    Stick behind 'em - could be none aforegoing know/experienced worse than I.
  19. Bob

    Bob

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  20. orion

    orion Senior Member

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    Totally agree with the comments so far. One of the reasons why things are so bad for ME patients in the UK is because our (mostly self-appointed) representatives are either totally clueless, obsessed with ingratiating themselves with the medical establishment, or actively working for the other side. It's hard to see how the signatories (some of whom supposedly have ME themselves) can so spectacularly miss the elephant in the room.

    Nothing will change for us unless GPs are allowed to disregard NICE guidelines without fear of being disciplined, or better still, patients are given the power to self-prescribe.

    However, if I take my ME patient hat off for a minute and look at the wider implications of the 'reforms', I agree with the signatories that they do look to be extremely misguided. One of the weaknesses of the NHS's structure is that GPs act as the gatekeepers for all treatments. That's an enormous concentration of power in the hands of a relatively small number of people.

    The system works tolerably well if you've got a good GP. But if your GP is lousy (and let's face it, many are) then you're basically screwed. I just don't see how concentrating even more power into the hands of GPs can be a good thing.

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