Phoenix Rising supports the Millions Missing global day of protest
Phoenix Rising is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest …
Discuss the article on the Forums.

BBC Radio 4 You and Yours today

Discussion in 'General ME/CFS News' started by ladycatlover, Oct 13, 2017.

  1. ladycatlover

    ladycatlover Senior Member

    Messages:
    190
    Likes:
    1,038
    Liverpool, UK
    Just found out from a friend on an email List that "You and Yours" are covering ME and benefits today at 12.15. Also chocolate :gift: and gambling. :depressed:

    I'm hoping that I can listen through our FreeView TV, but it'll be up on site shortly after broadcast.

    http://www.bbc.co.uk/programmes/b0977v82
     
  2. markielock

    markielock staying independent, one day at a time

    Messages:
    319
    Likes:
    1,824
    Scotland, UK
    I might tune in, thinking of attempting benefits again, uuuugggghh lol
     
  3. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,323
    Likes:
    4,359
    London
    Not sure how much time they will have for ME/Benefits as they seem to have a range of topics today as gambling on now
     
    ladycatlover likes this.
  4. hellytheelephant

    hellytheelephant Senior Member

    Messages:
    874
    Likes:
    4,509
    S W England
    On now!
     
    ladycatlover likes this.
  5. hellytheelephant

    hellytheelephant Senior Member

    Messages:
    874
    Likes:
    4,509
    S W England
    That sounds like a typical case. I had that I have 'MS' on my asessment! I am still waiting for my appeal date. Over a year since I applied- 7 months since I applied for the appeal.
     
  6. TreePerson

    TreePerson Senior Member

    Messages:
    208
    Likes:
    983
    U.K.
    It was good. An excellent example of outright dishonesty. The reporter didn't mince her words and Clare Ogden from AFME did a good job at confirming that this type of misreporting and dishonesty is widespread. Stressed the need for assessors to provide simple system of recording all interviews.
     
    slysaint, Esther12, RuthT and 3 others like this.
  7. ladycatlover

    ladycatlover Senior Member

    Messages:
    190
    Likes:
    1,038
    Liverpool, UK
    SamanthaJ, Daisymay and markielock like this.
  8. markielock

    markielock staying independent, one day at a time

    Messages:
    319
    Likes:
    1,824
    Scotland, UK
    Listening now and it's leaving a bad taste in my mouth as to how parallel this is to my own personal situation.

    In the 3 attempts I've made to attain disability benefit (ESA and then PIP twice), I've been awarded zero points for all components of their "investigation"; their reasoning being that I didn't have any physical or mental impairments. I remember being so shocked because I never expected the DWP to so confidently lie about my health condition. It went absolutely in the face of how my meeting went (what was discussed etc.) and my clear medical and employment histories. I even tried to appeal once, and sent in a lot more information but they didn't even acknowledge the new evidence. I don't know how you can fight against that?

    I honestly they think they graded me, if I was even objectively graded at all, on whether I could make a short walk down a corridor and could gently push against the "medical professionals" hand... Cause', you know, that's a great test for a fluctuating health condition.

    I didn't even go to my fourth attempt at applying for disability benefit because, 2 months after I submitted my PIP forms, they invited me to a meeting at a technology park outside of town where there's no public transport link.

    You know what they say, fifth times the charm.

    On a side note, the power should be in your regular doctors/specialists hands on whether you should receive the benefit. Give them the tools and the powers to make the decisions and hold them accountable. Surely that's what they're trained to be doing?
     
  9. ladycatlover

    ladycatlover Senior Member

    Messages:
    190
    Likes:
    1,038
    Liverpool, UK
    @markielock Have you had any help with filling in your forms? Benefits and Work have useful notes, and are reasonably priced (around £20 for a year I think). For Tribunal I ended up going to Fightback4Justice (they're contactable on FaceBook or via their website). I was doing DLA to PIP, and had already lost my Motability car. :cry: Since I'm 69 :eek: (67 at time of original face to face with Atos, 68 by time got to Tribunal) I only had the one chance - couldn't re-apply as too old. :(

    So for me it was well worth paying (low fee compared to usual lawyer fees for such, plus travelling expenses from Bury) for the advocate that I had via F4J. I went from low rate Daily Living and low rate Moving Around to top rate for both. When I got my back payment I did make a donation to F4J, as they help people who can't pay as well as those who join their VIP group (2 levels of payment a month, but you can unjoin it at any time). I don't think I'd have got such a good result without my advocate's help.

    Think Scotland is going to get rid of the companies who do the assessments and go back to using doctors? Or maybe that's an SNP wish - I wasn't paying much attention when I heard about it I'm afraid. :redface:

    I wish you the very best of luck with your new applications. :hug:

    Maggie
     
    markielock likes this.
  10. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,323
    Likes:
    4,359
    London
    Problem is that not all PWME have a doctor or specialist who understands their health condition and how it impacts on daily living. How many NHS specialists or GPs's will write a report that says how many steps a patient can write or how well they can produce a meal?

    If you attend one of the "Fatigue" clinics then they are not always going to write a report that tells an honest story.

    Many long term ME patients don't have access to any medical care for the disease. That means no doctor to write a report.
     
  11. markielock

    markielock staying independent, one day at a time

    Messages:
    319
    Likes:
    1,824
    Scotland, UK
    @ladycatlover I'm sorry you got mucked around for so long! I will certainly explore those organisations you mentioned. I also have some leads for organisations/charities in the area from my Universal Credit work coach. I have reached out for help in filling out forms and attending meetings with a chaperone who works for a charity etc... However, their government funding dried up before I could make use of it. I'm hoping I'll get some joy in the new area I'm living in :).

    @ukxmrv I absolutely agree. I think when I said what I said I was thinking in 'ideal mode', ha ha. My ideal being these doctors would be well versed and have taken the time to monitor you correctly over time and with an empathy beyond a ticked box.
     
    ladycatlover and ukxmrv like this.

See more popular forum discussions.

Share This Page