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PIP refused for CFS - worth appealing?

Discussion in 'General ME/CFS Discussion' started by CFSNewbie, Apr 23, 2016.

  1. CFSNewbie


    I received my letter today advising that I haven't been successful for PIP.

    I scored 6 points for daily living and 4 points for mobility .

    I got 0 points for cognitive function - possibly because I managed to spell world backwards and remembered 3 words ! This does not accurately reflect my cognitive function .

    I'm currently off work sick and I am receiving treatment at a CFS service .

    Is it worth asking for a reconsideration , then appeal ?

    I don't have any further evidence other than additional fit notes and the letter from CFS service outlining my symptoms .

    How long does the whole appeal process take ?

    Thanks in advance .
    Invisible Woman and MeSci like this.
  2. Esther12

    Esther12 Senior Member

    I would, but it might be worth trying to speak to an advisor who specialises in benefit applications to get some help.

    I'm not sure about PIP, but for a lot of benefits it seems that there are reasonable success rates for appeals, particularly for CFS where the DWP often seems unfair to initial applications.
    Invisible Woman and Valentijn like this.
  3. user9876

    user9876 Senior Member

    Its probably worth giving the ME Association or AfME a ring to ask for advice
    Invisible Woman likes this.
  4. Esther12

    Esther12 Senior Member

    Invisible Woman, Valentijn and MeSci like this.
  5. charles shepherd

    charles shepherd Senior Member

    You may find this MEA guidance helpful:

    MEA notes on PIP Applications, Reconsiderations and Appeals:

    Firstly, we have a very comprehensive MEA guide to filling in the PIP application forms

    The MEA guide goes through all the PIP questions and how to answer them in relation to ME/CFS

    It also emphasises some of the key points that we have been discussing with the DWP in relation to PIP - eg that you are able to carry out the activities being assessed in a way that is reliable, repeatable, safe to yourself and others, and in a timely manner

    People have found this guide to be very successful in relation to obtaining this new benefit
    MEA guide to PIP and other DWP benefits:

    Secondly, if your application has been refused there is an initial mandatory reconsideration process

    Thitdly, in relation to a appeal appeal, there are several things people can do to increase the chance of winning an appeal. These include:

    1 Obtaining good supportive (written) medical evidence to support your case. In relation to PIP, this can come from people involved with your care (eg a care or social worker if one is involved) and any health professional who is involved with your care (eg OT, physio, nurse) in addition to your GP and/or consultant

    2 Turning up in person at the appeal

    3 Getting feedback from people with ME/CFS who have been through the appeal process - you could do this by using MEA Facebook (see below) where we have over 6,000 regular members who are always willing to pass on this sort of practical feedback

    In addition, this is a useful source of information on preparing for an appeal from the MInistry of Justice:

    This video, made by the Ministry of Justice with an introduction by Dr Jane Rayner, Senior Medical Adviser, First Tier Tribunal.

    Dr Rayner is a very kind and helpful doctor whom I have met at the House of Lords, is also useful - although it refers to ESA:

    Minutes for meeting at House of Lords with Dr Rayner:

    Dr Charles Shepherd
    Hon Medical Adviser, MEA

    PS We have a lot of members on MEA Facebook going through all stages of the PIP process - applying, filing in forms, preparing for medical assessments, going through reconsiderations and appeals etc. You may find it helpful to start a discussion there as well.
    veganmua, Kati, Scarecrow and 4 others like this.
  6. sarah darwins

    sarah darwins I told you I was ill

    Cornwall, UK
    That seems extremely important. Most of us can probably empathise with this:

    Because most of us can do those things ... until we can't. Being able to carry out basic cognitives tasks isn't much use in the real world if you can only do it for an hour or so each day, and some days not at all.
    L'engle and Invisible Woman like this.
  7. JohnCB

    JohnCB Immoderate

    Cross you bridges one at a time. Save your energy and you sanity until you need them. At this stage you only need to consider reconsideration.

    My experience is with DLA. I haven't yet had to apply for PIP. I was turned down at first application. Zilch. On reconsideration I got high mobility and middle care. I have no idea what made the difference. Maybe first time they did not understand my position. To ask for reconsideration I sent a relatively short but a bit emotional letter. Then I got it. I did stress in the letter how much I was struggling.

    Do remember you won't get the benefit simply on the basis of you diagnosis. Look at the form. Did you keep a copy? If not ask them to send you one pronto. When you phone and ask for the copy, ask them to note that you plan to ask for reconsideration and that you are worried about the timescale to receive the copy and send your written request.

    Now look at the form and see if you did stress your disabilities. You cannot overstress your problems. It can be a painful business considering properly what you really can and cannot do. Do stress problems with repeatabilty. If you can do something once but cannot do it again, say that. Don't say "I can do it." Say that you cannot and then explain.

    Get someone else who knows you to go through it and tell you what you have missed. My daughter reminded me of all the adaptations I had made, such as having multiple cordless phones around the house so that I don't have to struggle when the phone rings. We forget how we have had to change over the years.

    Add extra pages perhaps, describing what your life is actually like. Keep stressing the difficulties you have, with everything that is a difficulty. Hammer the business of frequency of activity and also how if you do A you cannot do B, or if you do B you cannot do A. Make sure they understand how limited your life really is.

    To get the benefit, you have to be disabled. Being ill is not enough. Show that being ill has made you disabled.

    Do go for reconsideration. That may be enough. You may not have to go to appeal. Lots of decisions do get changed. Mine was changed quite dramatically.

    Good luck.
    Sea, MeSci and AndyPR like this.
  8. worldbackwards

    worldbackwards Senior Member

    I remember seeing stats from about 15 years ago which said that 2/3rds of ME patients got turned down for disability benefits (IB I think) first time around, but well over 90% of those who appealed won. It seems that it was a standard position. My understanding is that it isn't actually as bad now for us as it was then for first time claimants. That isn't to say it's good...
    sarah darwins likes this.
  9. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Cognitive function can be assessed by proper testing. If you're in the UK, this can be done in Hospitals and, arguably, should be.

    Personally I would appeal, and in the mean time try and get an QEEG brain map done. I've had this done and it shows I'm literally half asleep when awake. So my brain waves are Delta (sleep waves) when awake, now that really would affect your cognitive function! QEEG testing is hard to find, but there are some places in London that do it.

    Also next time, make sure you don't ''save your brain'' knowing you have an appointment, as otherwise they are testing your brain in it's pre 'used' state. PWME PWCFS brains wear out very quickly, so we tend to 'save up' by doing nothing to get to an appointment.

    After I've typed on here I always relapse, sometimes for weeks. I also say goodnight to people in the middle of the day, and other confused thinking, just by using my brain actively. So try and use your brain, then get tested and see again if you fail the test.

    In ME CFS the more you think, the worst your cognitive function will become as part of the disease process.
    L'engle likes this.
  10. clairelou


    North-West, UK
    Hi, I appealed my DLA decision, and the appealing panel found in my favour. The panel consisted of 3 gentlemen and they couldn't have been lovelier. They genuinely seemed astonished I had been turned down for DLA and when I was aked to leave the room whilst they made their decision, I could hear them giving the DWP representative a right rollicking for making me go through the appeals process.

    When I filled in my form for ESA I did a thorough google search, there are lots of sites explaining the points system, and help with examples and how to explain your symptoms as best you can to be awarded points. It may well be worth searching for PIP points system, PIP CFS.

    For a small fee I joined this site - the information was invaluable!!! they include information on PIP:
    Personal Independence
    Payment >

    Take our free PIP test
    Learn how to complete the 'How Your disability Affects You' form.
    Find out what happens at your medical.
    Learn how to appeal

    I used a legal clause when filling in DLA, you may be able to use for PIP. It is something like if your condition will be made worse by working - then they are legally obliged to make an award - I put a cover note in mentioning this. Good luck.
    Last edited: Apr 25, 2016
  11. veganmua

    veganmua Senior Member

    London, UK
    Hi, could you tell me more about this legal clause?

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