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Weird NHS ME clinic referral form

Discussion in 'ME/CFS Doctors' started by Sarah94, Jul 20, 2019.

  1. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    I just remembered this...

    Last year, I was given a referral to the local NHS CFS/ME clinic. They sent me a massive questionnaire to fill out. I never had an appointment with them in the end, because I left the area to move in with my parents. (I'm glad now I never saw them because I'm sure it would have been damaging.)

    The questionnaire was mostly about symptoms, but there were some odd bits at the end... It asked whether you think that your condition is physical, psychological, or both! When I was filling it out, I thought they genuinely wanted my opinion on it... but now I am doubtful, haha. Is it their way of trying to find out whether patients are going to be resistant to the BPS method? Is it common practice for these clinics to ask this in questionnaires?
     
  2. Trish

    Trish Moderator Staff Member

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    There are so many questionnaires used by ME clinics and researchers. It might be interesting to survey which ones different clinics use, and what use they make of them.

    Do you still have the questionnaire, @Sarah94?

    If so, is it simply a series of questions with boxes to tick, or do you have to write comments as well?

    I wonder whether clinics make up their own questionnaires, or use standard ones and put their own clinic label on them, or whether they tell patients what the questionnaires are that they are filling in.

    And are they using them purely to aid diagnosis, or as part of a service evaluation with the same questionnaires filled in at the end of treatment?

    So many questions!

    Would it be useful for someone to do a study?
     
    MEMarge, Judee, JohnTheJack and 13 others like this.
  3. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    I actually think I do have it somewhere! Will look later.

    I'm so glad I never got to the point of sending it in - I definitely wrote things on there, out of naivety, that would not have served me well to say at a BPS clinic.
     
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  4. JemPD

    JemPD Senior Member (Voting Rights)

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    @Sarah94 those questions on the form about what you attribute your symptoms to are well sneaky if you ask me :sneaky:
    Not ok.

    I'm glad you didnt go there
     
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  5. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    Found it.

    It's loooong.

    A load of questions about symptoms, which I think is mostly based on Fukuda criteria.
    "Describe what happens if you push yourself too hard"
    "Are there any other symptoms which worry you?"
    Questions about mental health history - have you ever experienced depression? If so what triggered it?
    Question about any other past medical history.
    "Do you think you have CFS/ME?"
    Do you feel that this illness is physical?
    Do you think that this illness is a mental problem?
    Do you think it might be a mixture of both physical and mental?
    Option to write your thoughts regarding this.
    What would you most like help with? (Options including: confirming diagnosis, relief of specific symptoms, advice on managing the illness...)
    Space to write further comments about this.

    Note: it was around May 2018 that I got sent this questionnaire.
     
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  6. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    My guess is that they ask this because older studies have claimed those who attribute their illness to a solely physical cause won't recover. It's an old idea.
     
    Gecko, MEMarge, alktipping and 11 others like this.
  7. Forbin

    Forbin Senior Member (Voting Rights)

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    Well, here's one way to respond...

     
  8. Hutan

    Hutan Moderator Staff Member

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    Quite a number of posts about mice (and dolphins and whales and the Hitchhikers Guide to the Galaxy) have been moved to this thread.
     
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  9. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    I got this at St Helier as well. And it asked other odd things Too but can’t remember

    I also had to fill out the anxiety and depression questionnaire think it’s called GAD? The one usually used in hospitals / clinics. I had a high anxiety score because I have high anxiety which I’ve had lifelong, it’s not related to M.E but in my case they used that as a reason why I was ill.
     

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