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Campaign to get the NHS to review the NICE guidelines

Discussion in 'Advocacy Projects' started by msf, Mar 13, 2015.

  1. msf

    msf Senior Member

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    Hi,

    I mentioned this idea in another thread, but it didn't see to garner much interest there, so I am hoping a thread of its own will grab people's attention.

    The basic idea is for a Facebook campaign to pressure the political parties into a commitment to get the NHS to review the NICE guidelines for ME so that they better reflect how ME is seen in other developed countries.

    If we just got people to post a comment on the Facebook campaign page pledging to vote for any party who would make such a commitment, it's possible we could persuade one of the main parties to make such a commitment. If we then encouraged people to post a comment again on voting day confirming that they voted for that party, we might be able to put pressure on the whichever party gets into power to make a similar commitment.

    This strategy relies on two factors: (1). the relative ease of running a Facebook campaign (a particular important factor in ME advocacy), and (2). the fact that the election is finely balanced (as it stands), which increases the chances of one of the parties making such a commitment in order to garner some much-needed votes.

    If the reinstate Jeremy Clarkson campaign can get 800,000 plus comments in a couple of days, surely an ME campaign would be able to get a decent fraction of that over a couple of months!

    A particularly important step would be getting the ME association and Invest in ME to support the campaign, so I will be asking both Dr. Shepherd and Prof. Edwards for input.
     
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  2. msf

    msf Senior Member

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    Oh, I'm making a page for the campaign, does anyone have a suggestion for a.) the title, or b). the profile photo? Presentation has never been my strong point.
     
  3. eafw

    eafw Senior Member

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    Would be on board with a campaign to get the NICE guidelines reviewed, but NOT "Facebook" and not on the basis of just getting a load of people to sign up to put pressure on election candidates in the hope of geting some sort of pledge from them. (It won't work apart from anything else)

    We need a much more structured approach, with solid research and work behind it and there is not a quick way to do that.
     
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  4. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    That would be my position. Medical guideline decisions are not for politicians to make - they are for competent medical professionals to make in the light of scientific evidence. The fact that at the moment things are not right for a particular illness is not something a politician should be promising to put right. We need to persuade the relevant professionals to be more rigorous. That will take time and also evidence. Various people, including Charles and myself, are trying to achieve that in as structured a way as they can, but it will take time.
     
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  5. msf

    msf Senior Member

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    Eafw, when you say it won't work, do you mean it isn't possible to pressure one of the parties into such a pledge, or that the results of such a review wouldn't be worth the effort?

    Prof. Edwards, you might have a better understanding of this than me. The ME guidelines have been placed on the static list, the criteria for placing guidelines on such a list are:

    • No quality standard commissioned
    Or
    • A previous full review which yielded a ‘no update' decision and at that time no major ongoing studies/research was identified as due to be published in the near future (that is within the next 3-5 years)
    Clinical guidelines placed on the static list will be reviewed every 5 years to determine if they should remain on the static list. Routine surveillance every 2 years (as per the process for active guidelines) would not be carried out on guidelines transferred to the static list.
    Consideration to transfer a clinical guideline back to the active surveillance list may occur in the following circumstances:
    • The high level review at 5 years yields new evidence which may impact on the guidance
    • Stakeholders notify NICE of relevant new evidence which may impact on guidance at any time point, for example safety data.
    • A quality standard is commissioned that relates to a guideline on the static list

    So is ME on the static list because it fulfills the first criteria? Surely it can't be on the list because it fulfills the second criteria, unless for some reason the Lipkin and Fluge and Mella studies don't count?

    As for the need for political action, the idea occurred to me after reading Dr Shepherd's thread, in which he suggested that people write to their MPS about changing the NICE guidelines?

    http://forums.phoenixrising.me/index.php?threads/uk-general-election-in-may.35790/
     
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  6. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I am not sure that the reason for the current situation is that interesting. It needs changing but that would seem to be allowed whatever the reason if we can inform NICE of relevant new evidence. We can do that but an unsuccessful attempt could backfire. Even a successful attempt could backfire. If NICE are convinced that there is no proven treatment for ME/CFS then the NHS might axe all ME/CFS services.

    Lobbying MPs is fine because MPs have a responsibility to support their constituents in their grievances through dialogue and consultation. But all the MP can do is bring the matter to the attention of NICE with maybe a bit more force than we can. That is a far cry from a political party promising to have some guidelines changed. Party manifestos are about legislation, not about the different parliamentary function of dialogue and consultation. The last thing we want is political interference in the detailed workings of the health system.
     
  7. msf

    msf Senior Member

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    I wasn't suggesting we should get a political party to promise to change the NICE guidelines, but rather to promise to ask the NHS to review it before the next review is due (2019). The only difference between my and Dr. Shepherd's proposals are that Dr. Shepherd's involves lobbying individual MPs, whereas mine would involve lobbying the parties themselves.
     
  8. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think there is still an important distinction between what a party promises to do as a government and what an MP does as part of representing the interests of his/her constituents. These are two different aspects of our parliamentary system. What governments do has to be impartial amongst lots of interest groups and not interfering because governments are there to give instructions and must not overstep their remit. Representing constituents is allowed to be partial because it is just bringing something to attention.
     
  9. msf

    msf Senior Member

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    I don't see the difference between a pledge to help small businesses, say, and a pledge to ask the NHS to review the NICE guidelines for ME - both affect a particular interest group. I understand that you think that the government shouldn't interfere in the NHS's internal decisions, but I doubt ME patients would be too worried about such interference if it resulted in positive change in terms of the NHS's position on ME.
     
  10. msf

    msf Senior Member

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    I think the tactics are sound (and the ethics of those tactics), but I'm open to the idea that the timing is wrong - that such a campaign would potentially be more productive in 2020, if the 2019 review of the NICE guidelines does not reflect the research that will be done in the next few years.
     
  11. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    A pledge to help small businesses would be a pledge to change tax law. That is very different from a pledge to ask a public service to consider whether they are being consistent in their policy - which Mr Milliband or Mr Farage could personally do tomorrow, nothing to do with being the government. Governments cannot lean on people. If they want to pass a law there has to be a vote. Individual MPs and Select Committees can lean on people.

    A major reason why lots of patient groups are getting a raw deal at present is that governments have interfered with health care policy for political gain. If we ask them to beat NICE over the head until it bans CBT, I strongly suspect the next step for Mr Hunt would be to withdraw all ME/CFS services as not cost effective and save himself some more money. I think we need to tread quite carefully. Basically, we need to have an argument for NICE recommending something else and so far I do not see what that would be.
     
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  12. OverTheHills

    OverTheHills

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    I am no longer living in the UK, and my experience is limited to one ME/CFS clinic, but I question whether scrapping the existing UK services would be a bad thing. I don't see what value they add for patients currently.

    My impression is that most are staffed by psychologists/psychiatrists and OTs/Physios with false illness beliefs. I doubt they would be particularly good at delivering future (biomedical) treatments whether disease modifying (eg B-cell) or symptom relief (pain, sleep) or supportive (pacing/heart rate advice for newer patients).
     
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  13. msf

    msf Senior Member

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    It seems to me that the NHS are likely to ignore individual MPs asking them to have another look at the NICE guidelines. I think another reason patients are getting a raw deal is because there is too little accountability in the NHS.
     
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Do you not think that the current treatments offered are doing more harm than good? Many sufferers do. What is the advantage of keeping the current provision going if it is doing more harm than good? Would it not be safer to have no treatments offered at all than treatments that cause harm? Then we could stop expending energy warning people off attending these clinics, and people would not be living in fear of losing benefits because they refuse to attend them.

    "First do no harm."
     
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  15. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    What about the Health Select Committee? Does that have any teeth?
     
  16. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    My understanding is that this is the sort of route Charles Shepherd and Lady Mar have gone - through the lobbying function of parliament - and I think it is the relevant route.
     
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  17. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    If we close down the clinics for Dr Bansal and Prof Newton and the few people trying to do some research on patients then we have no hope of getting anywhere - to put it bluntly. I might as well say goodbye to IiME. And in the paediatric sector at least I think it is important that there are specialists who at least know something about the natural history of the condition to advise parent. Otherwise we would have parents with kids with ME/CFS having to see a GP who knew nothing of the illness. And I know of a number of ME/CFS specialists who would be interested in trying other treatments if we had good evidence that they worked. Without people like Nigel Speight where would kids with ME have been in the past?

    So yes, 'first do no harm'. Let's make sure we do not cut off our face to spite our own nose.
     
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  18. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Oh yes - I didn't mean to close the clinics doing proper research. Are they ME/CFS clinics?

    What I meant was to close facilities offering/promoting/imposing CBT, GET, 'mindfulness' and other irrelevant stuff for physical illness or in connection with ME/CFS. And I don't mean to stop offering these to patients presenting with psychological illnesses, which could of course be co-morbid with a wide range of physical illnesses and disabilities.

    I'm talking about those clinics that set out to inflict psychological treatments on pwME on the pretext that they are not implying that ME is a psychological illness - when all the time this is exactly the premiss on which they are basing their treatments.

    The paediatric sector worries me at least as much as adult provision. I have heard some horror stories about those too.
     
  19. Aurator

    Aurator Senior Member

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    Yes, and I think it's true to say that even in the less enlightened clinics there will be individuals or even a significant percentage of staff who know the current official treatment strategies are not fit for purpose, and will do anything but dispense advice or treatment they feel to be inappropriate.

    I was sent to see a senior physio for my GET, and his attitude towards GET was completely at odds with what PACE told him was the case. Without any prompting from me he acknowledged that we were in uncharted territory in managing this illness and that the safest thing patients could do was to stay within their self-defined limits, whilst trying not to let deconditioning take too big a toll.

    My "course" of GET consisted of this one meeting, in which he asked me how much activity I did, said it was probably too much already, and that I should be careful to watch for warning signs (which we discussed) that I was overdoing things.

    That was the beginning and the end of my GET. He did say that if I felt I needed to see him again I should give him a ring, but since he had five more ME patients to see that afternoon and another twenty-five that week (it was Wednesday) I decided there and then to do him and his other patients the favour of not contacting him again. In any case, I felt I'd already had the tenner's-worth of NHS treatment that each ME patient in my NHS trust gets on average.
     
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  20. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    If only it were that simple to do one thing without the other! And I am thinking very much along the lines Aurator posts - there are quite a lot of well meaning people with experience mixed in with the parrots.
     
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