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markyboymarkyboy Member Posts: 368 Pioneering
To all the people suffering with these conditions  i have today received from the M / E association a guide to filling in your PIP forms for a small cost, this is a must read and goes through all the descriptors and gives examples of how M/E sufferers can get their point over on each descriptor to get points.
You may worry that especially with M /E that you will not be believed so anyone out there who is about to put pen to paper on a PIP claim form purchase this guide first.


  • pollyanna1052pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    I worry when I read about a cost to information which I feel should be free.
    But if it is especially for a group who have difficulty in getting their condition explained and you feel it is worth paying for it, then that`s a choice you are entitled to do.
  • wilkowilko Member Posts: 2,357 Disability Gamechanger
    If people spend time researching and producing information that helps you or me get the benefits that we so deserve but would not otherwise get with out using a paid for resource then surely it's better to pay a little and gain your benefits than try repeatedly unsuccessfully. 
  • cristobalcristobal Member Posts: 968 Disability Gamechanger
    edited September 2019
    @wilko - you're probably right but something doesn't feel right to me if you have to pay for a guide to help you claim benefits. There's no cost to the charity if it's available via download...

    It's not the cost it's just the principle...
  • markyboymarkyboy Member Posts: 368 Pioneering
    The cost is only 3 pounds and it goes to a charity that is underfunded and does a great amount in helping sufferers manage this condition.
    You only get one chance to fill in the application for PIP form get it wrong by not understanding how PIP works and you end up appealing and down the dreaded tribunal road and by the time you get your hearing you have forgotten what you first told the DWP
  • cristobalcristobal Member Posts: 968 Disability Gamechanger
    edited September 2019
    @markyboy - I agree with you....£3 isn't a lot but it's just not right in my opinion...it's something that charities should do and fundraising should be separate...
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    £3 for a guide to how to fill out the form when it's not about a diagnosis, it's how those conditions affect your ability to carry out daily activity based on the PIP descriptors. Everyone's affected differently by these conditions and in my opinion the only way to fill out the form it to write it how it is, giving a couple of real life examples of what happened the last time you attempted that activity for each descriptor that applies to you.

    There's no correct way to fill out a form and there's no specific wording that you need to use.

    I wouldn't pay it either.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • markyboymarkyboy Member Posts: 368 Pioneering
    It is no different than going in to a charity shop and having to pay for goods they all have to do things to raise money that 3 pounds could help you to get an award sticking to your principles get's you nothing just a good nights sleep
  • cristobalcristobal Member Posts: 968 Disability Gamechanger
    edited September 2019
    @markyboy -  we obviously see this completely differently...

    I support several charities, use charity shops, buy charity Christmas cards etc as, I imagine, do a lot of people.

    I'm happy to do so as they do commendable work.

    What I'm uncomfortable with is a charity making a charge - albeit a small one - for a leaflet helping sufferers to claim benefits...

    For example if Crisis were charging the homeless for leaflets giving advice about how to apply for housing then I'd drop them like a stone..

  • markyboymarkyboy Member Posts: 368 Pioneering
    I posted this article specifically targeted to people who have ME unless you have this condition it does not concern you .
    People with ME will at some point look for help from the ME association as there is no help from the NHS 
  • worried33worried33 Member Posts: 399 Pioneering
    I think its sad that charities cannot even charge £3 without people complaining, a normal legal consultation equivalent comparison would likely be 100s of pounds.

    Would you rather that charity not be there at all because it couldnt stay afloat because people think £3 is a ripoff in 2019?

    At £3 whilst not free its still extremely heavily subsidised.
  • david235david235 Member Posts: 170 Pioneering
    I have seen the ME Association's guide to DLA and ME back in the pre-PIP days. It made helpful suggestions of things that might be relevant to the fairly abstract legal tests used for DLA.

    I'm less certain of the merits of a condition specific guide to PIP, as the PIP activities and descriptors have fairly specific meanings. However, knowing the ME Association, it is likely a good quality guide and might help some. £3 is hardly a lot of money.

    As @poppy123456 says, there is no single right way to fill in the PIP form for ME - those with ME need to explain how their ME affects their ability to perform the various ME activities. You can take twenty people with the same condition and similar symptoms, but the functional effects would be different for each individual.
  • mikehughescqmikehughescq Member Posts: 6,637 Disability Gamechanger
    As someone who has produced two specific condition guides re: PIP and DLA I believe there is some merit to the approach with some qualifications.. I’ll take some convincing that payment is justified or necessary. 

    The qualifications are that there actually is one rock solid consistent approach to form filling regardless of condition and functional consequences and the only difference between guides really is to highlight the functional consequences of a specific condition; the need to record those and give examples. 

    I have seen the ME guide and I’ll stand to be corrected but the last time I read it it didn’t provide the most fundamental advice relevant to someone with ME/CFS around the fact that more than most other groups they will need to seek help and/or an extension of time for completion. A 2 week extension for PIP is the default upon request but essentially it’s an administrative deadline and can go well beyond that if needs be. That advice won’t be costing you £3. Nor will I charge you £3 for https://community.scope.org.uk/discussion/56365/pip-form-filling#latest
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