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ME Association Quick Survey Nov 18: Do you have a healthcare plan that is consulted, adhered to and kept up to date...?

Discussion in 'Advocacy Action Alerts' started by Andy, Nov 2, 2018.

  1. Andy

    Andy Committee Member & Outreach

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    Full question: Do you have a healthcare plan that is consulted, adhered to and kept up to date every time you see a healthcare professional?

    Available answer options:
    • Yes - fully in place from a GP
    • Yes - partly in place from a GP
    • Yes - fully in place from hospital ME/CFS service
    • Yes - partly in place from hospital ME/CFS service
    • Yes - from a private doctor
    • No - never asked
    • No - asked but refused
    • Not sure
    • Do not have any contact with doctors
    Survey available at https://www.meassociation.org.uk/, middle of the three columns towards the bottom of the page (i.e. scroll down to get to it).

    MEA Facebook page post on it.
    Code:
    https://www.facebook.com/meassociation/posts/1968478716543110
     
  2. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    I had come to the conclusion I needed to address this issue with my GP especially as my GP's practice does not seem well able to deal the situation adequately when I am not able to attend the surgery.

    Unfortunately as I was drafting suggestions for some form of care plan, I have found out my GP is about to retire.

    I do not know the other doctors in the practice, so will have to wait to see what happens.
     
    Mij, MEMarge, ladycatlover and 3 others like this.
  3. Webdog

    Webdog Senior Member (Voting Rights)

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    I used to do my best to adhere to my treatment plan, hoping it would improve my health. That is, until a doctor-prescribed treatment plan turned my mild/moderate ME into longterm severe ME.
     
  4. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I would choose "No - never asked" .

    The thing is though, given the current NICE guidelines I don't want one.

    I spend my rare GP appointments perched on a high tightrope. On the one hand minimizing symptoms so they won't decide to try to ship me off to a clinic that best case will just waste what energy I have, on the other trying to give them just enough information so that they can do their job and take it seriously.

    I never really discuss ME with them much anyway. It's not like there's a whole lot they can/will do.
     
    MEMarge, Mij, MarcNotMark and 7 others like this.
  5. wdb

    wdb Senior Member (Voting Rights)

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    I'm not even sure what a healthcare plan would look like, my GP and I both agreed that currently they have nothing really in the way of treatment to offer me.
     
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  6. NelliePledge

    NelliePledge Moderator

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    I guess a minimum viable product treatment plan would involve having an annual review to look at symptoms to make sure anything that could potentially be helped wasn’t being overlooked. This would mean patients would have permission and a forum to discuss symptoms and Drs would have a better understanding of ME merely by having these discussions.
     
  7. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Well, that really rather depends on the GP, I think. In an ideal world you could get in touch if you got a new symptom or one became much worse and have it addressed, but with the roll out of IAPT it could give them just the excuse for a referral.

    I know I am taking the negative stance here, but I'd rather be cautious. It's such a kick in the guts when you go in expecting to be treated with respect and taken seriously only to find yourself being treated as though you aren't actually ill.
     
  8. NelliePledge

    NelliePledge Moderator

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    Fair point @Invisible Woman I was jumping ahead and envisaging that a care plan for everyone with ME as a basic approach that could be rolled out by the NHS and hoping this might be something simple non PACE based that can replace current approach
     
  9. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I think that would be wonderful and should be available to everyone. One of the things that worries me about some advocacy efforts is that sometimes people ask for more treatment and access. I worry this is open to, and has been misinterpreted, as wanting more of the same.

    It feels nitpicky, but while the BPS remain so powerful it seems anything you say can and will be twisted and used against you.
     
  10. JemPD

    JemPD Senior Member (Voting Rights)

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    Me too. A 'care' plan for someone with ME can soon turn sinister. Better to fly under the radar at the moment iyam.

    Dont want them thinking 'if it's that bad we'd better do something".... knowing that the only things they can do are more ineffective & harmful CBT/GET......... so i'd rather present as 'not too bad thank you'.
     
  11. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    I only really go if there’s something they can fix (piles etc). I did try once and suggested we review my symptoms periodically, but when I started the doc just said, “so do you want me to refer you back to the CFS clinic”. When I explained that the clinic had told me that there was nothing more they could do and that I was thinking of another specialist (it was for OI symptoms), he just kept repeating this until he said that the appointment was over and that next time I should book an appointment with a different doctor X. When I looked on the surgery website, doctor X is the one that specialises in anxiety and depression :banghead:. This is strange since my records have the assessments that show that I have neither.

    I put ‘no never asked”, mainly since they seem unlikely to provide one.
     
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  12. Mij

    Mij Senior Member (Voting Rights)

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    I'm so sorry to hear this :(
     
  13. Mij

    Mij Senior Member (Voting Rights)

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    My GP: "well they haven't really figured it out yet".
     
  14. Mij

    Mij Senior Member (Voting Rights)

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    Who would be in favour of starting a thread reserved only for treatments that have harmed pwME and made them worse?

    It's a serious issue, and although we can't change the damage that has been done, we can hopefully inform new patients of the negative effects of long term antibiotics, long term antivirals etc.
     
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  15. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    The snag with that, given the current scenario, is that almost any treatment may have harmed patients.

    In the same way that you will nearly always find someone who will claim any treatment has helped.

    When seeking opinions I think it's certainly worth getting both positive and negative feedback.

    Edited - hit the reply button too soon - twice :oops:
     
    Last edited: Nov 5, 2018
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