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UK NICE guideline consultation open 10 July 2017 until Friday, 21 July 2017.

Discussion in 'Action Alerts and Advocacy' started by Jo Best, Jun 22, 2017.

  1. Jo Best

    Jo Best Senior Member

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    Last edited: Jun 22, 2017
  2. msf

    msf Senior Member

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    Um, could someone point out to them the need for science this time?
     
  3. Londinium

    Londinium Senior Member

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    Is this a consultation on what to put into the NICE guidelines, or just whether such a review is needed?
     
  4. Jo Best

    Jo Best Senior Member

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    Just whether a review is needed.
     
  5. Jo Best

    Jo Best Senior Member

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  6. Binkie4

    Binkie4 Senior Member

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    Has the guideline development group been formed or is this done once a decision is finally made that the guidelines need reviewing?
     
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  7. MEMum

    MEMum Senior Member

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    Is there any chance that PR could be included as a stakeholder? PR certainly represents loads of UK patients and European and worldwide ones whose health has suffered due to the adoption of PACE recommendations.
    We could collate a summary of real science-based evidence of abnormalities in the physiology and biochemistry of people with ME.
    I am sure many members would be happy to help and maybe @Janet Dafoe (Rose49) could add a quote from Ron!

    What do members think? Anyone up for this @Tom Kindlon , @Mark , @JaimeS , @AndyPR ...@anyone else who's interested. Even if we are not registered stakeholders, I think it would be good to submit our views.
     
    Last edited: Jun 22, 2017
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  8. Jo Best

    Jo Best Senior Member

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    I don't think they will form the guideline development group until they decide whether a review is needed.

    This is the updated list of stakeholders: https://www.nice.org.uk/guidance/cg53/documents/stakeholder-list-2
     
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  9. Jo Best

    Jo Best Senior Member

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    Who can register?
    • National organisations for people who use health and social care services, their families and carers, and the public
    • Healthwatch organisations
    • National organisations that represent health and social care practitioners and other relevant professionals whose practice may be affected by the guideline
    • Companies that manufacture medicines, devices, equipment or adaptations, and commercial industries relevant to public health, e xcluding the tobacco industry
    • Tobacco industry organisations who register to participate are automatically registered as respondents
    • Public sector providers and commissioners of care or services
    • Private, voluntary sector and other independent providers of care or services
    • Government departments and national statutory agencies
    • Organisations that fund or carry out research
    • Overseas agencies with a remit covering England
    • Local or regional groups representing people who work in, or use health and social care services can register as stakeholders only when there is no national organisation that represents the group's specific interests.

      From: https://www.nice.org.uk/get-involved/stakeholder-registration
     
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  10. MEMum

    MEMum Senior Member

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    Thanks for the list @Jo Best. Flicking through, it seems any group can join from: British Association of Drama Therapists to Eli Lilley and Co, and the MoD. Maybe they are all Brritish based? No I see Niger Delta University...
    Has to be worth an email....?
     
  11. Barry53

    Barry53 Senior Member

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    This is a crucial distinction insofar as targeting responses. Concentrate on whatever will (must surely!) convince that a review is vital. But don't go on about things that should be reserved for the review itself - we know how easily distracted and side tracked final decision meetings seem to have got in this are. Don't want to shoot ourselves in the foot.

    Would be good for them to come to realise from the responses they receive, how much egg they will soon have on their faces if they could not even have the nouse to call a review given what is going on.

    Am I right they will only call a review based on new *evidence*?
     
    Last edited: Jun 22, 2017
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  12. Jo Best

    Jo Best Senior Member

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    I would have thought this might cover PR (as it's a USA-registered org I think but with international remit)?
    Yes, worth an email I should think, if the Board wanted to register PR as a stakeholder.
    • Overseas agencies with a remit covering England
     
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  13. MEMum

    MEMum Senior Member

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    Maybe we would be eligible as an "Overseas agency with a remit covering England".
     
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  14. Jo Best

    Jo Best Senior Member

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    @MEMum yes I think we cross posted there :)
     
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  15. Large Donner

    Large Donner Senior Member

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    If that's the case I cant see anything changing as there is no new accepted treatments in the scientific literature. NICE will ignore any criticism of PACE etc simply because they will claim it is the "best available evidence and is peer reviewed".

    They are also likely to use the line that something is better than nothing and that withdrawing the current recommendations of CBT and GET would leave patients with nothing and NICE exists to provide everyone with something . If they have some words on a peace of paper they will sign it off...job done!!

    They will also use the "free to chose" narrative. I personally think also that there is no way the BPS school hasn't been meeting with influential people from NICE and the policy makers behind the scenes especially in this blame and austerity culture politics.
     
    Last edited: Jun 22, 2017
  16. Jo Best

    Jo Best Senior Member

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    This is how this question arose whether to review (as CG53 was on the static list).

    Then there's this: https://www.nice.org.uk/guidance/cg53/documents/surveillance-adhoc-report
     
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  17. Jo Best

    Jo Best Senior Member

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    I think it's quite structured, they have changed the type of guideline they produce since CG53 was published, so the questions asked for this stage will be limited to arrive at that specific decision whether to review, as you say.

    They wrote, "Feedback was also sought from the GDG Chair who indicated that they agreed with the approach to bring the surveillance review forward to 2017. They felt that by 2017 there is likely to be a clearer case definition and evidence on which categories of patients respond to the therapies now available." From: https://www.nice.org.uk/guidance/cg53/documents/surveillance-adhoc-report
     
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  18. Jo Best

    Jo Best Senior Member

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    Yes I think we're still well up against the might of the British BPS crew.
     
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  19. Barry53

    Barry53 Senior Member

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    For sure. But I think they must now realise they are up against a much stronger/credible advocacy on our side. Hope they are wetting themselves. The credibility aspect is crucial for is to get across at every chance.
     
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  20. slysaint

    slysaint Senior Member

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    Just looked thro the list of stakeholders, counted maybe 14 that would definitely want a change to the NICE guidelines.
    A lot more that would not.

    Very oddly (or not, depending on how you look at it), Action for ME do not appear to be on the list?
     
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