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Format of NICE stakeholder meeting?

Discussion in 'Advocacy Projects and Campaigns' started by Keela Too, Dec 27, 2017.

  1. Keela Too

    Keela Too Senior Member (Voting Rights)

  2. NelliePledge

    NelliePledge Moderator Staff Member

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    AFME saying GET “can worsen the symptoms” of people with ME is the understatement of the chuffing century. On average that may be the case but it seems to me that I have in the last 18 months or so since I began getting involved in forums/social media that I have read numerous personal accounts of people who had relatively mild symptoms who became housebound or bedbound as a result of GET simply describing that as a worsening is NOT effective advocacy

    Pathetic effort by AFME

    One of the benefits of the Myhill complaint to GMC is that it is formally putting on record individual harms caused by PACE/NICE guidelines If there are hundreds or thousands of individuals involved that will be hard to brush over so lightly.
     
    Last edited: Jan 16, 2018
    TiredSam, ladycatlover, Inara and 6 others like this.
  3. Sasha

    Sasha Senior Member (Voting Rights)

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    I've just read that and it's great to have your impressions of the meeting. The list of points you took with you to make are excellent.
     
  4. Esther12

    Esther12 Senior Member (Voting Rights)

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    Thanks to everyone who attended.

    Bet a lot of the people at NICE are dreading this one.
     
  5. Trish

    Trish Moderator Staff Member

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    ladycatlover, Skycloud, Inara and 5 others like this.
  6. Dr Carrot

    Dr Carrot Senior Member (Voting Rights)

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    Thanks Keela - some friends who attended and sounded like they were in a different group to you had almost the exact same impression, so this is very encouraging.
     
  7. Cheshire

    Cheshire Moderator Staff Member

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  8. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    Think NICE Comms are more than aware of our issues with GET/CBT. More and more 'talk' taking place publically and we are all trying to add our bit by RT, sharing on FB, adding info.

    Thank you to all members who attended and are reporting in. Rest well, ready for the next stage.
     
  9. NelliePledge

    NelliePledge Moderator Staff Member

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    Sharpe bravely ventured out then - I hope nobody harassed him
     
    ukxmrv, ladycatlover, Trish and 4 others like this.
  10. Andy

    Andy Committee Member

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    60 stakeholders present, less him and a few cronies, I reckon that must equate to around 55 people harassing him by rejecting his theories on ME. ;)
     
  11. Cheshire

    Cheshire Moderator Staff Member

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  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    My thoughts about the NICE stakeholder meeting:

    @Keela Too has admirably summarised the format of the meeting and the main proposals I suspect put across on all six discussion tables.

    My only personal quibble would be that I think ME/CFS or CFS/ME are sensible terms to retain, partly because I see ME on its own as likely to alienate even more potentially unsympathetic doctors. I don't think 'ME and CFS' is helpful because that either suggests that there are 'two diseases' which there are not, or that the guidelines are intended to include 'not ME' i.e. 'chronic fatigue' which is actually not what is wanted. Moreover, it is not a matter for NICE what doctors call illnesses, so any request to NICE for a change will be by definition window dressing, and I worry that obscures the important issues.

    I agree that perhaps the key general point, which we also touched on, was that the guidelines should not imply that professionals should 'know what is needed' and present patients with certainties but rather be open about the fact that nobody is sure what the best thing to do is.

    What intrigued me most was the elephant in the room - the reason why we were there at all, which was not mentioned once by the speakers from the floor and I suspect hardly at all even in the groups - the need to remove recommendations for CBT and GET. It nevertheless became clear that the NICE staff were absolutely clear that this was why we were there and that they had taken on board that this was not an issue for a few minority activists but essentially for all patients. At our table the facilitator said 'I presume everyone here is agreed on that' - despite the fact that a paediatrician and an occupational therapist were present who I suspect may not have realised this was why we were there and for whom these remained standard practice.

    In terms of the mix of 'stakeholders', my impression was that about half were from patient organisations and of one mind about CBT and GET. There were some professionals, including the ones I mentioned, but my impression was that psychology was barely represented, with the exception of Dr Michael Sharpe. I don't know how things went on that table but Lady Mar was also there!

    I presume that knowing the guest list the organisers decided to make it impossible for any open debate to arise between stakeholders, on the assumption that it would lead to acrimony. Any reference to any sort of dissatisfaction with specific treatments was studiously ignored by floor speakers. That seemed disappointing. However I think the two outcomes one might have hoped for in this respect were both fulfilled. NICE heard a uniform opinion from all patient related groups that CBT and GET were not wanted. Moreover, whether in the pub or at the meeting patient advocates had a good opportunity to compare notes and get a sense of solidarity.

    On the down side I think we may have spent too much time, at least at our table, asking for things that people should not expect NICE to help with. I think a lot of time was taken up with asking for a beefed up service. I am sure there should be a beefed up service - indeed just a service would be a start. But I do not think that is what NICE is about. Their job is to give guidance on what a service should provide if there is one. The real problem is probably with NHS England or Mr Hunt not finding funds. I personally think the old guidelines are actually pretty reasonable on most issues although there could be a greater sense of urgency.

    Time was also taken up with suggestions based on doubtful 'science'. There was a request for doctors to be able to be more flexible in using treatments that might benefit individuals even if there was no firm evidence from trials. That seems to me the sort of thing not to ask for because it immediately allows the BPS side to argue the same. There is no good reason to think that antivirals and such like really do any good to anybody and it is going to be so easy for a committee to dismiss patient requests if they are seen as inconsistent. There was also a suggestion that there is scientific evidence for GET being bad for patients but the reality is that there is none. We simply have the experience of patients to go on. In normal healthy people certain types of exercise, like repeatedly stepping down on a treadmill, cause damage to muscle over a period of days. However, there is no reason to think this is bad in the long term and if you do a sport that requires such actions you need to work through the damage phase. So 2 day CPET results are interesting but they do not provide a reason not to use GET.

    All in all it seems to me that something important has been achieved but there is still more work to do. NICE are very clear that the great majority of patients believe that CBT and GET are worse than useless. They realise that a committee must not be made up entirely of psychiatrists. However, when the committee comes to look at the evidence the only evidence for treatments working they will find will be on CBT and GET. It is going to be hard for them to not at least mention that there is supposed to be some evidence. Hopefully that will not be followed by a recommendation. However, I sense an attitude even amongst physicians and paediatricians that if CBT and GET are not available they will have nothing to offer. A lot of doctors find that uncomfortable. They should not but they do. So there will be a tendency for CBT and GET to remain in the guidelines even if watered down. That will depend to a degree on who is on the committee. That needs some thought. Applications are being taken in June and July.
     
  13. Valentijn

    Valentijn Guest

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    She doesn't seem like the sort to take prisoners ... I almost feel sorry for Sharpe. But not quite :D

    NICE has a "Do Not Do" list, which in the case of ME/CFS excludes several basic and helpful tests (OI, B12) solely due to the combination of popularity among patients combined with a lack of evidence. I'd love to see GET and illness-denial CBT end up on that list instead.
     
  14. Andy

    Andy Committee Member

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