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Webb et al 2011: What stops children with a chronic illness accessing health care ...

Discussion in 'Latest ME/CFS Research' started by Dolphin, Jan 9, 2012.

  1. Dolphin

    Dolphin Senior Member

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    Free full text: http://www.biomedcentral.com/1472-6963/11/308

    * I gave each sentence its own paragraph
     
  2. Esther12

    Esther12 Senior Member

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    Part of Crawley's 'give me money' campaign? Three papers on the trot now. It's amusing seeing salesmanship written as research.
     
  3. Dolphin

    Dolphin Senior Member

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    A few random points on this sympathetic piece

    I read this yesterday.

    A few random points.

    I found it a sympathetic piece. I would be much more inclined to show this to non-ME/CFS people than many/most other Crawley studies as, for example, CBT and GET aren't promoted directly.
    NICE guidelines are mentioned a few times which might be a problem for some - but none mentioned the therapy/treatment recommended that I recall and can see on a quick skim back - it's in the context of how quickly patients should be seen.

    There are two parts to it: some maths bits and the qualitative bits (i.e. based on interviews).
    If you don't know any maths/don't like looking at tables, you could easily skip those bits and just look at the bits where they quote people (parents) and bits where they summarise/analyse what the parents said.
    So jump straight to "Qualitative interviews" (and skip tables on that page). Even if you don't like big words, or find it tiring, you could read the bits in quotes easily enough.

    Although these are parents describing what happened in appointments with their GP/other consultants, the points would resonate with plenty of adults also.

    ---
    My criticisms/questions would be more to do with what is unsaid. For example, the impression is given that all will be right when you make it to a service, or perhaps in particular their service. But I don't think that is the case.

    Also, education of medical and health professionals is given as the answer: however if the education is that patients need graded exercise/activity therapy and CBT based on GET/GAT, that isn't going to change attitudes necessarily in the right way (and could even make things worse). (It is mentioned once or twice that a lack of a positive test e.g. blood test, can be part of the reason for the lack of support).

    ---
    Technical point on the maths part: they try to get the scales around 0-10 for a Hazard ratio. They score the SF-36 physical functioning (SF-36 PF) subscale 10-30. For the Chalder Fatigue score and SF-36 PF they divide the scores by 10. However, I think they should have made more of an effort with the SF-36 PF: this gives a range of 3.33-10. They could easily have done it more accurately by taking 10 from any score and dividing by 2, giving a range of 0-10. Anyway, it wasn't found to be significant in terms of the "time-to-assessment". Not sure if it would have been otherwise.
     
  4. Dolphin

    Dolphin Senior Member

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    Although, as I say, I find this particular piece sympathetic, I think it would also fit in with a "give me money"/get-the-children-to-me-and-everything-will-be-ok campaign.
     
  5. Enid

    Enid Senior Member

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    Thanks Dolphin - I found this quite sympathetic too - education of GPs, Paediatrics - even ignorant Psyches to get past their apparent disbelief still is so very needed. Trouble is - where are the specialist services (without the CBT/GET ists.)
     
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  6. Esther12

    Esther12 Senior Member

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    Her last piece was less specific about promoting CBT/GET, and more sympathetic sounding, I think MEA liked it because it made CFS/ME sound serious and worthy of money... but I don't want money wasted on me just as a sign that my illness is being taken seriously. I've not read this new piece yet, but there does seem to be a trend within the NHS towards commodifying the sick and then using them as revenue generators, and the last couple of Crawley papers have read like propaganda pieces generated for that purpose. It just results in waste, inefficiency and quackery.

    The fact is that the last time we heard any specific claims from her about the efficacy of treatments, she claimed that PACE showed a recovery rate for CBT/GET of 30-40%. Maybe the true figures have a number of CFS 'experts' slightly worried about their ability to justify their services, so they may now be trying to cosy up to patients to save their jobs... better to have nothing than people like that sucking up societies resources. Better to chuck the NHS's money away on homoeopaths.

    (Bad mood... I think it's justified though. Odious quacks). Thanks for your comments though Dolphin. It's always good to be able to flick through your summaries when I don't have time to read a paper myself.
     
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  7. Sean

    Sean Senior Member

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    It is all about helping the kiddies. How could anybody object?

    [/sarcasm]
     
  8. Tony Mach

    Tony Mach Show me the evidence.

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    I thought first: "Gee, what a nice study."

    BUT.

    The problem is that the Wessely school is known to operate under the "false illness believe" paradigm and they think it is not helpful to state that (would lead to adverse patient reaction, or some such). If they don't operate under "false illness believe" paradigm, they should state it. Otherwise I get the feeling they operate under a "Wink, wink. Nod, nod." modus operandi which I would say is unscientific and anti-humanistic (not telling the patient what she/he has? humanism my ass). I think they are really convinced they are helping people with their treatment, but they if they behave like this one can never be sure what they honestly mean and what not.

    Maybe I'm wrong and they operate without such a paradigm but I say if they are not distancing themselves (clearly or veiled) from the practices of others in their business, then this means they are endorsing them. No fence sitting. Not in that matter and not for people working in that field.
     
  9. Tony Mach

    Tony Mach Show me the evidence.

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    That, actually sounds quite critical. But in one of the next paragraph they stress the "lack of empathy", so I am getting mixed signals here.

    So should doctors better hide what they think, learn to "better communicate a lie", learn to play an dishonest theater? Or should there be a change, should doctors take this illness seriously and take an honest interest in that illness?

    Later on in the 'discussion' they write:
    As the main (and only?) care available in the UK are CBT and GET (and what they think is causing the recoveries), I think this makes it clear that they operate under a "false illness believe" paradigm and they think it is important to dispel these "false illness believes" fast.

    Again, they really think it is helping but I think they don't deal honestly when they write studies like this.

    A bit more mixed signals at the end:
    I get the impression that they say "we can't tell the parents that there is no biomarker for 'false illness believes', so we have to better 'communicate' a lie to them". Or what? I find this all a bit ambiguous.

    Bonus points for having to face the ignorance of many doctors though.
     
  10. Enid

    Enid Senior Member

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    Well it is critical here Tony - "false illness belief" seems embedded in medicine in the UK. I've had a disbelieving GP (though barely able to move/passings out), 4 Docs at the end of my bed in Accident and Emergency following collapses producing a psychiatrist only (can't recall how I managed to escape that hospital - sense little muscle power for self preservation knowing their ignorance came to my aid). Crawley's patients are children and I see this as a call for more specialist testing to pick up treatable pathologies and perhaps above all medical research into this widespread illness.

    I don't like recalling but will do for those who suffer the ignorance here of the mumbo jumbos. Actually more intelligent than they ! C----- them not for me but children.
     
  11. Dolphin

    Dolphin Senior Member

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    Although Esther Crawley has ended up supporting GET and CBT, I don't believe she is really a hard-line Wessely School person. I don't think she is an ideologue like Peter White, Simon Wessely, Trudie Chalder, and co. So I would read this paper a little differently to if one of them wrote it (although I'm not sure they would likely write a paper like this).

    ---
    Regarding your second post, I don't really get a lot of the mixed signals you mention e.g. the first and second quotes seem similar. The lack of empathy is on the part of other professionals.
     
  12. Enid

    Enid Senior Member

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    She does not know like most in the UK - yet ! One day you walk freely one day you don't - a slow complicated pathology sets in - tell me any studies - here on PR are all any researcher needs to put together. Simple as that.

    Can we put all this together Dolphin (not just this or that finding which still points nor the Uk medical profession bogged in their superior ignorance) and try to find for ourselves.
     
  13. Vitalic

    Vitalic Senior Member

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    This is the most distasteful aspect of it to be honest, no one has the right to lie to a patient even if they think it might help them. What if we lied to terminal cancer patients to prevent them from being fearful in their final days?
     

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