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NICE Guidelines Review - Aug 2013

Discussion in 'General ME/CFS News' started by user9876, Aug 26, 2012.

  1. user9876

    user9876 Senior Member

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    Last time they seem to have got the university of york to do a literature review which looks at a lot of papers in a very trivial way. I.e. tabulates things claimed in the papers.
    http://www.nice.org.uk/nicemedia/live/11630/34188/34188.pdf

    I've only had a quick glance but I think there is a big issue with this style of review since drug papers are far more honest in reporting than those produced by the psychiatrists who spin their results and miss out data. Since the reviewers don't read critically then the basis of the review is poor.
     
  2. Esther12

    Esther12 Senior Member

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    We're pretty screwed if the literature review involves just totting up the reported results from different studies. There's so much quackery in CFS than unless they take the time to look critically at the actual evidence themselves their conclusions will simply end up reflecting the prejudices of those researchers most able to churn out lots of papers.
     
  3. Firestormm

    Firestormm Guest

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    Another thing NICE promotes but I feel fails in practise is the use of 'care plans' also known as 'management plans'.

    I raised this at our recent meeting with the commissioners to be told that several attempts had been made to make use of such things for people with long term conditions (essentially both a record of treatment, who's involved, and any strategy including personal goals etc.) but they had not proven successful which I took to mean they couldn't quite figure out how to do such a thing when each 'department' is working often from different computer systems.

    However, NICE are very keen on using such things and I'd personally like to see them evolve into something akin to a 'contract of care' if you like. An agreement with all those 'multi-disciplines' who are supposed to be involved (across health and social care) that lays out your progression through the system.

    I can't see any reason why patients and GPs could not maintain such plans and I know they are certainly used in respect of other conditions though not for all patients. It would help a patient to see how their care is being structured and could prove a great help.

    There are plans afoot to enable patients access to their own medical notes via the internet (heaven's forbid imagine how that will get cocked-up) - indeed this has all ready proven the case in respect of some GP surgeries in the land - if that is to happen then why not care plans too?

    Makes no sense to me that NICE should be promoting them on the one hand and then in the trenches they are being seen as impractical. Realistically I strongly suspect they see them as being 'too much of a challenge'. Idiots!

    Afore I go.... one more thing. NICE doesn't specify the degree to which follow-up appointments/reviews should occur whilst someone is disabled by their ME. I think this is an important 'missing' factor.

    As is the need for consideration to be afforded to co-morbidities. Such things would be picked up (in theory) only by regular reviews.

    Oh buggar! Thought of something else now. Bad case of verbal diarrhoea this evening it would seem :)

    And as I said before - the NICE Guidelines are very scant in regard to what exactly a 'specialist service' should actually be. They mention the involvement of neurologists, immunologists etc. but it's very much on an ad-hoc 'only if you are able to afford it' basis.

    There is no 'model' service provision and whilst this could raise some controversial discussion (though it isn't as if we as patients or 'service users'* haven't all ready had these discussions) I do think that NICE should point the way, should indicate to the commissioners how exactly multi-discipline care should be applied in all cases.

    When all that cash was dropped on local PCTs from da government to provide a specialist provision they were left to their own devices when it came to implementation. No follow-up. No review as to effectiveness. No 'model' approach. No guidance. Buggar all really.

    And now all that money has run out (some time ago and perhaps even diverted - oooo scandal conspiracy :D) and the Government is pumping funding into long term psychological management for long term conditions and very little else outside of acute care - we really need to bring pressure to bear in this regard also.

    Aw crap. I could be gainfully employed for several lifetimes pursuing all this stuff and the worst thing is (although I do think I 'know my enemy' and therefore have realistic expectations) I am no longer convinced any of it is worth it. Perhaps because of those realistic expectations. Who knows?

    I have learned though not to be too disappointed by perceived or real inaction from any of my (our) efforts. There is only so much we can do after all. And I am not dissuaded (yet) from trying my best.

    *Don't you just loathe this term? Service Users! Unfortunately I have been present at several meetings where patients were referred to as such.

    I objected most strongly - especially on one occasion - really lost it at that point. Fools!

    Who do they think they are, Tesco's? No. If they were Tesco's they would have more respect for their customers who could always take their trade to the competition.

    We haven't got any choice. Not like we can pop along the road to Morrison's and get ourselves an appointment with someone else, is it?
     
    justy likes this.
  4. Enid

    Enid Senior Member

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  5. user9876

    user9876 Senior Member

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    We had huge trouble when a consultant refused to write a care plan but instead wrote ambiouous letters to the GP. I think your point about a care plan is important as this sets out what treatments have been agreed and what has not.

    You mentioned co-morbid conditions. Another problem is that other doctors (e.g. orthapedic surgons) are not aware of the problems that things like long waits and appointments can cause. So a care plan that could be communicated with other doctors would be good.
     
    justy and Firestormm like this.
  6. alex3619

    alex3619 Senior Member

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    Historically the conflict of interest issue has been brought up again and again. We have to stop treating this as reasonable and rational, and treat it as political.
     
    ukxmrv likes this.
  7. alex3619

    alex3619 Senior Member

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    Hi user9876, this is part of my argument against "evidence" based medicine. Its about crunching the numbers without understanding what those numbers really mean. Bye, Alex
     
  8. Bob

    Bob

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    Thanks for the link, user.
    I've just noticed that you've linked to a draft version.
    Here is a list of the final Appendices:
    http://guidance.nice.org.uk/CG53/Guidance
     
  9. PhoenixDown

    PhoenixDown Senior Member

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    What exactly would a 'Management plan' be in practice?
     
  10. Firestormm

    Firestormm Guest

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    I raised this with our new GP clinical commissioning group. Apparently, various attempts have been made over several years to put this best practice into, well, practice but with varying degrees of success.

    Essentially, it is a written plan that is updated each time a patient interacts with the NHS. It would include things like symptom record, treatments, etc.

    The idea being that it formed a more personalised and comprehensive record of a patients progress with their long term condition.

    One of the issues was not so much what would go into it - but how it would be stored and updated and circulated amongst the relevant medical professionals.

    It couldn't become something akin to the 'patient record' that is purported to be maintained by all GPs for example. I am sure we all have less than satisfactory experiences of those.

    Would it be maintained by the patient perhaps? How would/could that work? Would it be realistic? Should it be a computer-based record accessible by all professionals? How would that work?

    The idea behind multi-disciplinary care and involvement is that each professional is aware of the others' input and what each are doing/how they are involved. The 'care plan' was supposed to help 'glue' this all together.

    Like I said though, the idea is fine - it's the practical implementation - and funding - and communication - that appears to have led to it never really having been implemented.

    Thing about how hard it has been (why I really don't know) to link-up all our medical records throughout the NHS. For each GP surgery to maintain a viable computer-based system.

    In theory these initiatives seem great. In practice the NHS don't appear cut-out to implement them.
     
  11. Firestormm

    Firestormm Guest

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    This is NHS Choices entry relating to care plans: http://www.nhs.uk/Planners/Yourhealth/Pages/Careplan.aspx
     
  12. PhoenixDown

    PhoenixDown Senior Member

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    I've done a data protection request on my medical records and you are quite right. There's much that's either incorrect or totally missing.

    At the end of the day though, without adding treatments and tests to the guidlines, and changing the counter-productive biopsychosocial dogma, all the records in the world won't help us.
     
    Wildcat likes this.
  13. Bob

    Bob

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    For those who haven't seen this yet, these are the sort of arguments that we will be up against:

    Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development
    Charlotte Smith, Simon Wessely
    Journal of Neurology, Neurosurgery & Psychiatry
    Published online November 17, 2012
    doi: 10.1136/jnnp-2012-303208
    http://jnnp.bmj.com/content/early/2012/11/16/jnnp-2012-303208.full.pdf
    http://jnnp.bmj.com/content/early/2012/11/16/jnnp-2012-303208.abstract
     
  14. PhoenixDown

    PhoenixDown Senior Member

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    Thanks for the link, Bob.
    What joke, "Well conducted", we've been through this before in the PACE Trial thread so I won't repeat everything that's already been said. It still irks me that skeptics and quack busters seem to have a blind spot on this issue.
     
    ukxmrv and Wildcat like this.
  15. Firestormm

    Firestormm Guest

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    Shepherd discovered this and posted on Facebook. I haven't been through any of it yet I am afraid:

    To what extent they have been updated - or whether it reflects procedural changes - I don't yet know.
     
  16. Bob

    Bob

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    In terms of the PACE Trial, and the recent NICE guidelines 'mini-review' (I don't know the official name for it), this is the only thing of substance that the document says about PACE, that I can see:
     
    Firestormm likes this.
  17. Firestormm

    Firestormm Guest

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    Thanks Bob. That's pretty much the same as their interim review following publication of PACE I seem to recall. No change to protocols. Appreciate you looking :)
     
  18. Bob

    Bob

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    Ah, that is from the interim review. Sorry for the confusion. I wasn't sure if that excerpt had been widely quoted. I don't remember having seen it quoted.
     
  19. Firestormm

    Firestormm Guest

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    Blimey! You mean I actually remembered correctly?! Wonders never cease :)
     
    Bob likes this.
  20. Firestormm

    Firestormm Guest

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    Charles Shepherd MEA Facebook comment 15 December 2012:

     

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