August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
Discuss the article on the Forums.

England: Do this neurological patient survey, deadline Sept 30th 2016

Discussion in 'Other Health News and Research' started by Sasha, Jul 2, 2016.

  1. Sasha

    Sasha Fine, thank you

    Messages:
    12,759
    Likes:
    33,927
    UK
    http://www.neural.org.uk/campaignin...s/patient-survey-and-commissioning-audit-2016
     
  2. JohnCB

    JohnCB MEow

    Messages:
    304
    Likes:
    1,918
    England
    Survey filled in. A little long but not difficult. A bit emotional as it reminds me how little care I get.
     
  3. AndyPR

    AndyPR Tired Sam ate all the cookies!

    Lol, what are these Neurological Specialists that they refer to?? I mean I've heard they exist but having never seen a specialist of any sort I've always assumed they are mythical... ;)
     
    alkt and Sasha like this.
  4. alkt

    alkt Senior Member

    Messages:
    176
    Likes:
    294
    uk
    i finally asked m gp for an appointment with a neurologist last summer he made an appointment with liverpool s so called me clinic where the staff were brainwashed into treating it as a wrongful illness syndrome their paper regarding how to treat patients is on this site somewhere .i phoned the clinic and asked them to send me an updated patient info leaflet the secretary point blank refused .so i cancelled my appointment in the best interest of their wellbeing since i have very little patience for idiots.
     
    Invisible Woman, Sasha and AndyPR like this.
  5. Sasha

    Sasha Fine, thank you

    Messages:
    12,759
    Likes:
    33,927
    UK
    I hope you've filled in the questionnaire! :)
     
  6. alkt

    alkt Senior Member

    Messages:
    176
    Likes:
    294
    uk
    yes although the questions did not really give enough multiple choice answers. they should have also asked if your doctor showed any personal knowledge or even an interest other than fobbing you off for years on end with painkillers.although that is better than no palliative care whatsoever.
     
    Invisible Woman likes this.
  7. Sasha

    Sasha Fine, thank you

    Messages:
    12,759
    Likes:
    33,927
    UK
    If memory serves, there are boxes for open-ended answers and I used the last one for a bit of an essay on what's wrong with the NHS when it comes to ME/CFS.

    Things are so screwed up with the NHS approach to ME/CFS that any questionnaire aimed at illnesses that are treated normally is not going to have appropriate forced-choice questions.

    Ah well! It's good that they're asking - we just have to use those open-ended, "is there anything else you want to say" boxes to get our views across.
     
    Valentijn and Invisible Woman like this.

See more popular forum discussions.

Share This Page