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NICE turns down Valerie Eliot Smith as stakeholder

Discussion in 'General ME/CFS News' started by Binkie4, Sep 28, 2018.

  1. Binkie4

    Binkie4 Senior Member (Voting Rights)

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  2. Adrian

    Adrian Administrator Staff Member

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    I think NICE were removing some organisations particularly some of the local ME groups. There rules state that they need to be national organisations.

    We (S4ME) are still a stake holder (or I haven't heard different) we were when the comments on the scoping document.
     
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  3. Andy

    Andy Committee Member & Outreach

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    I've had no communication indicating our status has changed.
     
  4. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    I have a vague recollection that there was some confusion about this issue.

    Were there one or two local ME groups accepted and are they now still stakeholders? I really can’t remember the details. Can anyone else? The local group I belong to was not accepted.

    I think the process of revising the guidelines needs to be clear and consistent so we need to be alert. I wonder if local groups were allowed at the beginning, then the issue was rethought and they were eliminated.
     
  5. Adrian

    Adrian Administrator Staff Member

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    I don't think local groups were ever allowed but some slipped in. I'm not sure what they would consider as a legit patent group but I suspect we can count as we have a fair number of members and many active.
     
  6. Adrian

    Adrian Administrator Staff Member

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    It looks like she tried to register under a research group title and I think that can be very hard when the group is not a university group. Sometimes those writing the rules never imaging that non-university groups would ever do research.
     
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  7. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Our Suffolk Youth & Parent Support Group was at first accepted and we attended the January event. An officious NICE HR type woman came up saying she wanted a word with me.
    Her demeanor was such that I asked if i was on the naughty chair........?!!!!
    She said, "well sort of..."
    She said we didn't qualify as a stakeholder (local) group and that NICE admin had made a mistake!
    I am a member of Healthwatch but they would not allow me to attend under their remit.
    So eventually and after we were all subjected to NICE unfathomable process (or lack of), I was register as LocalMe rep with Tina R. (which they accepted, but it took weeks of being pissed about, excuse my french, and Jillc (bless) and Jillp taking the brunt of the work on behalf of Connie (Bless her too).

    I rang in the week to see if I could apply professionally, rather than lay but as a co oped topic group member.
    The lead said sorry no, but conceded that the NICE description and criteria was misleading and badly worded!!

    Me thinks I am best out of it anyway and I know of 3 appointed who I have confidence in so we have cover!!!
     
    Last edited: Sep 28, 2018
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  8. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Thanks @Suffolkres

    Sounds as if Nice had not fully thought through the selection of stakeholders process. I think I remember at least a couple of other local groups being selected but am not sure if they are still there.



    I think the issue of getting CBT and GET removed is such a crucial issue for us that I feel the need to check and recheck that all is going as it should with Nice and the guideline development.
    If we do not get CBT and GET removed this time round and they remain the core NHS treatments, whatever biomedical treatments are developed will be unavailable to us, and that is unthinkable.



    Valerie’s blog is a long one but sectioned clearly and contains much of interest
    QUOTING from Sept 28th 2018 blog

    “February 2018 (in response to some questions)

    The current incarnation of NICE was created by statute, the Health and Social Care Act 2012 (HSCA). It is governed by its own process as set out in the manual. There is very little flexibility about what it can do and how it can do it. NICE is not governed by any one specific area of law but by general public and administrative law practice and procedure, as are all public bodies. Likewise, the status of stakeholder has no legal basis as such. Any attempt to try a novel legal approach [on the process] would be risky in terms of costs and outcome.

    Professor Mark Baker [the then outgoing Director of the Centre for Guidelines at NICE] will not be able to make any undertakings or commitments. That would be beyond his discretion and outside the scope of the NICE process. Even if he could, he could not bind any successor. It’s necessary to understand that, even if anyone at NICE did want to “help” the ME community more, they do not (officially) have the power to do so ie. even if they did, they would not be able to say so publicly.

    I am the first to argue that ME patients merit special treatment, given the way we have been treated over many decades. However, the NICE process isn’t going to fix that. Without the benefit of a comprehensive, proactive/reactive media strategy aimed at radically changing the perception of both patients and illness (which would take a while) this will be a slow process [emphasis added].

    Whether or not it’s worth engaging in the NICE process is an impossible question. I have argued that we needed an expedited review to prevent further harm [by continuing the current treatment recommendations] but the amount it can achieve is limited, as is the role of stakeholders. Trying to get NICE to accommodate the demands of the community won’t work. However, even if a mass walkout of patient groups could be organised, that just leaves the review in the hands of unhelpful others. On balance, I think it’s better to be part of it but to keep expectations realistic.

    That said, there is always room for appropriate direct action by patient groups, so that voices are heard and concerns raised. Unfortunately, our reputation precedes us (crazy/hostile/angry/dangerous/unreasonable etc. etc.) and that isn’t a good starting point.

    As I said in [a recent] blog post – “The exhortation to “speak truth to power” has become a commonly used slogan. The actual use of this concept to achieve real results is a complicated and nuanced process, especially if those doing the speaking are themselves without power.” Until we can change that [see reference to “media strategy” above], progress will continue to be painfully slow.”



    “March 2018

    The NICE manual on developing guidelines is here https://www.nice.org.uk/process/pmg20/chapter/introduction-and-overview The relevant part of the HSCA on NICE (section 232 onwards) is here https://www.legislation.gov.uk/ukpga/2012/7/part/8 It creates the power for NICE to carry out its statutory functions and sets out the usual duties/standards etc.

    NICE has very broad statutory powers and is a self-regulating public body. This means that it would have to act very “irrationally” (in the legal sense) for any of its actions to be susceptible to challenge. This is quite normal for bodies of this nature and is to allow them a broad discretion in which to operate.

    In a nutshell, NICE writes its own rules and marks its own homework. That said, I wouldn’t necessarily dismiss everyone connected with it out of hand. Obviously, I remain sceptical – but not everyone is a bad guy. However, as I said before, those who work for NICE have very little discretion in what they can do as they are bound by the process.

    The main purpose of section 232 was to bring social care under NICE along with health. Presumably this was for political expediency – more commonly known as other ways in which we can cut costs and screw patients/those needing social care.

    [apologies for the language but sometimes it’s necessary to call a spade a spade…]”




    We have made some progress in that we have hopes of a full Commons debate, there has been some positive publicity in the media, there is the ongoing open letter to the Lancet, but we absolutely need Nice to drop CBT and GET. Without that ..............



    EDIT: added end of sentence beginning “I think the issue...”
     
  9. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  11. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    I’m wondering whether the Bristol and Avon Chinese women’s group might be a bit local? Perhaps they've gone national and retained the local name

    Oh my bad:

    “Membership


    Membership is open to all Chinese women living or working in Bristol and the nearby area aged 18 years and over who are interested in furthering the work of the Group. Only members are eligible to vote at the Annual General Meeting.

    The membership subscription covers the period from 1st April to 31st March.”
     
  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Is that because Chinese is written from right to left?
     
  13. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    The stakeholder list reads as very eclectic even eccentric, and one can not help why some of them actually want to be stakeholders.

    Also I am not sure of the logic for allowing ME/CFS services covering a specific local area, but excluding local patient groups because they do not have a national remit. Presumably this is because of an unspoken assumption that professionals will have more to offer than patients, which is not necessarily the case.

    Having read through the correspondence relating to Law and Health's rejection I still am unclear of the reasons for their rejection. Is it because they are not seen as an established formal organisation such as a university or hospital? It seems unreasonable to reject them just because their main public presence is online via a Blog. I understand that there needs to be some way of evaluating the appropriateness of including single person pressure groups as they could have unbalanced views, but any concerns could equally apply to a profession though nominally representing a university department or health service who in practice are only communicated their personal views. Indeed most patient organisations would argue that the problems in the current NICE guidelines are the result of unbalanced and irrational input from a small number of biased academics and clinicians. Do the current guidelines effectively leave it totally up to NICE who to include/exclude?

    It is worrying that there is so much confusion/inefficiency on the part of NICE as to who is entitled to be a stakeholder, especially given the historic situation for people with ME where we quite reasonably feel a degree of distrust for NICE and for the UK medical establishment.

    NICE say that excluded groups can feed into the process through the other included groups, which depends on finding other included groups that are willing and able to do this. Does NICE state at the start of the process that they hope individual stakeholder groups will be willing to represent other unrepresented groups? The most obvious area is the local patient groups and is NICE encouraging any of the national organisations to take on this role with them. For example I imagine here at S4ME we would be more than happy for most local groups to input into our forums, however I suspect we would want to discuss that input before passing it on and that there are likely to be a, albeit very small, number of local patient groups whose views we would be unhappy about feeding into the official process.

    If there is any bias in NICE's selection process, without any advice or guidelines on representation of other groups, that bias could be effectively be magnified by those included only passing on input that they agree with.

    Obviously the whole thing is potentially 'a pulling ourselves up by our own boot straps' exercise, but NICE by their own confusion as to who to include and who to exclude undermines a fragile confidence in the process.

    It is likely that Valerie Eliot Smith's initial inclusion under the wrong organisation was a low level 'clerical' error, but how NICE then dealt with her correction of this does not inspire confidence as it occured alongside the inclusion and subsequent exclusion of some (but apparently not all) local groups too.
     
  14. NelliePledge

    NelliePledge Moderator Staff Member

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    Agree @Peter Trewhitt it seems hypocritical to exclude local ME organisations while including individual NHS organisations. Not to mention including all those weird organisations that can only have some minor tangental interest. Whereas of course the purpose of ME groups is support for people with ME..................
     
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  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I agree. And even if excluded groups can add their input thro' other groups it will only count as one stakeholders views and have to 'compete' with all the other questionable stakeholders.

    Also I think that NICE should recognise somewhere just how many patients are being represented by the various patient groups.
     
  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    My impression is that although NICE may have made a bodge of selecting stakeholders for the initial meetings there were enough relevant people there to make the important points. From now on I suspect 'stakeholders' are not involved in the process, just the committee that gets formed. Applications for seats of the committee were not restricted to stakeholders at the meetings as far as I know. Some good people have been selected for the committee but we still know relatively little about its makeup.
     
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