No, You’re Not

Moving from Disability Living Allowance (DLA) to Personal Independence Payments (PIP) was always going to be difficult, given the current climate.

Like most of us with MS, I had a lifetime DLA award.

Because, in simple terms, – MS  is a lifetime, incurable, degenerative illness – and one which we would probably all willingly give up, should a cure be found?

After filling in an interminably distressing form – which took weeks – and and after enduring a ghastly face-to-face meeting with someone who would later blatantly lie about me in her report, I submitted a mandatory reconsideration.

The odds are heavily stacked at this stage – over 80% fail.

I did.

However, should you go to appeal, the odds are in our favour; 67% of awards are overturned in favour of the defendant.

So, basically, get ready for a court case. A court case! To prove you have MS.

As if we don’t feel battered enough?

The form itself was a kind of reverse-therapy; focus upon every single tiny thing you now cannot do that you perhaps once did. In the process, write numerous essays highlighting these points in excruciating detail. Nothing is off limits.

I’m not exaggerating when I say that I was traumatised and utterly broken after filling in the form.

And then there was the rejection, and the reasons for them. Every single point seemed to be refuted as I seemed healthy and happy, dressed appropriately for the climate (I kid you not) and was able to put my fingers through my hair. Oh, and I laughed (with my witness, my mum, nervously).


I sent in a mandatory reconsideration, and now I have found out my claim stays the same, so my only recourse is an appeal. Which could take well over a year. And I’m to be ‘reviewed’ every three years.

It’s a legal nightmare.

What should I do?

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19 thoughts on “No, You’re Not

  1. Donna Taylor says:

    I had a similar hideous experience with ESA and, when they left me penniless at my sickest, I appealed (last October although they didn’t acknowledge it until December because it had accidentally been “filed” instead of actioned) . I am still waiting for them to decide whether being half dead (often wishing that I actually was dead) from late stage neurological Lyme and EDS and barely able to make it through each day justifies me not working any more at the age of 47 (while bringing up my severe socially anxious ASD /EDS daughter who won’t leave the house without me). Every day I am so fearful of their constant judgement that I can easily imagine how it felt to be a Christian that has just been thrown to some very hungry lions. The system is an inhumane disgrace.

    • stumbling in flats says:

      God, this is terrible to hear.
      There surely has to be some kind of time limit in place, to stop this time-dragging. Constant judgement just about sums it all up. x

  2. Robyn says:

    Do what I did and find someone who does this for a living. I found one at a local community centre.

    She took one look at my decision and reconsideration and actually laughed. She wrote my appeal paperwork and will represent me when the appeal actually happens.

    So now I’m just mosying along, doing my best and waiting.

    • stumbling in flats says:

      We’re also very lucky here in Wales in that we have specially-trained people within the MS Society who can help – it’s part of a three year lottery-funded project 🙂 I’ve also heard that CAB are very good. X

  3. Patrick says:

    Have you spoken to your local CAB office? Also did you get the name of the person who ‘assessed’ you?

    The process is Dickensian, long winded and in our case in error. I will keep you updated on my application. It is now with the DWP

    Lets see what happens


    • stumbling in flats says:

      Not yet, but will definitely look in to it. Just don’t know whether I have the energy to take it further. It’s been going on for so long now. Good luck with yours! X

  4. Carina Muss says:

    I am so shocked to hear this… Does this mean that your DLA is scrapped and you get nothing in the way of benefits for being disabled? It is certainly worth going into appeal but what will you do in the meantime?

    • stumbling in flats says:

      I get some, but not the same as before and the discrepancy is quite big 🙁 As for now, it’s even more belt-tightening 🙁 X

  5. Tricia says:

    Fight to the bitter end. I applied for PIP
    last year. Had 0 points. My MS nurse
    told me about a local charity that could
    so off I go again. 🙀🙀🙀

    • stumbling in flats says:

      It’s such a merry-go-round. If the system needed overhauling in the first place, there should surely have been certain ringfenced illnesses?? Good luck 🙂 x

  6. Christina Martin says:

    Wow going through this horrible thing my self been called to go up in front of board on Saturday husbands day off !!
    Been horrendous including filling my life in and bringing me down further every detail from meds cathertise etc all not good 🤪

  7. Christina Martin says:

    And you it went oknin the office asks lots of questions listens and I did feel like it went ok
    Well she tried to move my legs and said it’s ok I can feel
    Them in a tight spasm don’t move
    My bladder I told her I wish I could have filmed me self on my loo floor a few days before because I have no feeling no control nothing
    Well. Let’s just wait and see !! Just another month !! To feel like criminal

  8. Christina Martin says:

    And you x

  9. Christina Martin says:


  10. Christina says:

    I had my reply today getting it all taken off from me
    I never found out from them by letter I
    Just got a return to work form yesterday so called
    And they said you pip as been turned down so the car that’s my legs has to !!
    So just wondering has a cure been found ?

    • stumbling in flats says:

      That’s unbelievable – I’m so sorry to hear. And to find out second-hand is despicable.
      I too am wondering where this cure is?! x

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