16 Weeks Later …

disabledOur Government never lies.

So, when you receive an indefinite award for Disability Living Allowance, you tend to believe them, especially as MS is incurable and degenerative.

As it was for me back in 2012. The money, as stated, went towards the extra costs a disability can bring. And life went on.

We still had a lot less money than before, as my working hours had substantially reduced, but the DLA provided a cushion of sorts.

Until October last year when The Letter arrived. It was entitled, ‘Your Disability Living Allowance is ending’. So it wasn’t ‘indefinite’ after all – ‘this affects you even if your DLA has no end date’.


Imagine the uproar if people receiving the basic State Pension (by far the biggest benefit paid out – for costs associated with being older and probably not working) were suddenly reassessed:

DWP: You’ve been claiming your pension for years. Indefinitely, we say in Government Speak. Subject to change, of course.

Pensioner: Well, yeah?

DWP: Ah, you see, not all pensioners are the same. Some need more support but most need far less. So we need you to fill out a massive form, gather evidence and put yourself through a degrading assessment where we will decide on the spot whether you are deserving or not.

Pensioner: Okaaaaay?

DWP: And that automatic Winter Fuel Payment you get? You know, the one you have if you were born before 1953? Even if you’re a millionaire? Don’t worry, you get to keep that. Not worth the backlash. It’s only £550 million a year. We normally target disabled people to get some money back in to the coffers. Makes for the most sensational headlines. 

Everyone under 65 receiving DLA or PIP for MS will have MS for the rest of their lives. Yet, they are all reassessed. One-third will lose their benefit, according to latest figures. They’ve taken £6 million off us people with MS so far, and counting.

Everyone receiving the State Pension will receive the State Pension for the rest of their lives, no assessment needed. Neither are people on DLA over the age of 65 reassessed. It’s an automatic roll-over on to PIP.

I have absolutely nothing against pensioners, I’m merely using their particular demographic to highlight the gross injustices within the entire DWP system. Here’s the latest figures:

£171 billion spent on all benefits, of which;

£90 billion spent on the basic State Pension

£36.7 billion spent on disability benefits

£2-£3 billion spent on Winter Fuel allowance for all pensioners living in the UK

£550 million spent on free TV licenses for people over 75

The whole system seems somewhat arbitrary? The assumption is, when you reach pensionable age, you are due benefits, regardless of any other factors.

As for working, which most of us with disabilities try to do as long as possible, 46.5% of us still work. 10% of people with the basic State Pension still work. In fact, we are pushed in to work, no matter what our disabilities. Figures show at least 90 disabled people a month are dying after being found fit to work. Again, imagine the outrage if the demographic group was different?

My face-to-face PIP assessment took place yesterday. I had, after much consultation, filled in the huge form, adding as much information as I possibly could, a brutal and inhumane exercise in its own right. Apparently the one hour the assessor spent with me will count towards the Final Decision the DWP will make – to continue disability payment or not.

We’re told this kind of assessment forms but a small part of the DWP Final Decision. I’ve heard otherwise and I have no idea whether I ‘scored’ enough points (yep, that’s what they do, they score you).

The weird thing is, I am fighting to remain poor, to retain the same benefit between DLA and PIP. Mine is not a new claim. If it wasn’t so tragic, with the possible outcome being so life-altering, I would laugh.

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12 thoughts on “16 Weeks Later …

  1. Helen says:

    This makes me feel so worried, I am just about to apply for PIP but feel I may not be deemed bad enough to qualify for it. I have secondary ms and although I can get around I am so slow esp if it’s a bad day.

    • stumbling in flats says:

      I feel for you – get as much help as possible to fill in the form (write drafts beforehand).
      Unfortunately, you must focus on what you cannot do. Do not be proud, you need to pull up every single thing you find difficult.
      If you need help, let me know! XX

  2. Sam says:

    Our minds are in sync on this.
    I emailed the MS Society about this during one of their campaigns. I also do not have anything against the elderly, however, can you imagine the form and letter asking…..
    How does your old age affect you?

    I know a lot of pensioners out there a hell of a lot more able than me and yet I am put through hell for something I cannot help, just like their old age!

    • stumbling in flats says:

      I couldn’t agree more, Sam! This whole selection process is nasty and ineffectual. It proves nothing. I would rather they set up cameras in my home, to show just how much MS impacts my life. Not just a one hour meeting. It’s wrong. x

  3. Teresa McTernan says:

    …and it’s such a depressing experience, spending an hour saying ‘how bad’ you are. I also did say to the woman that I recently met that completing the form was impossible as I have a major problem writing. But then typing an A4 description of my symptoms rendered my left hand weak for a day. I have to say she was really quite nice but when I said that she didn’t write it down and gave me a look that said ‘Really?’ but I was telling the truth but felt petty for mentioning this. I meant her to feedback that information but then didn’t ask her why she hadn’t written that down when she wrote everything else down. The whole thing makes you feel you’re cheating the system and we’re so not…you have written so well about it. Thank you xx

    • stumbling in flats says:

      This is so, so true. It’s been three months reversing all the positive work I’ve done on myself to get on with life and MS. Truly terrible to do it, and so counter-productive. X

  4. Sandy W says:

    I’m interested in the assessment process – did they refer to your form and work through it or ask different questions?

    • stumbling in flats says:

      I don’t think she had even read my form, apart from the bit out illnesses, meds and personal details. It was very much questions based on the descriptors, so it’s essential anyone going through this becomes familiar with them. She asked about a typical day, and I told her there wasn’t one. The thing I worry about most is that she asked me to stand on tiptoes and I refused as I’d fall over. I don’t think that was taken very well by her 🙁 X

  5. Joan (Devon) says:

    I am a pensioner as well as having MS and I don’t see how you can spotlight pensioners as an example of benefits. We have, through superannuation, graduated pensions and national insurance paid for our pensions all our working lives, in my case 44 years, so feel that it is what we ‘saved’ whilst working.

    Why don’t you mention foreign aid which goes to countries like China and India, which to my mind don’t need aid at all as they seem to be prospering better than we are.

    I understand how you feel about the unfairness of it all and that you will be at the mercy of one person, who may have got out of bed on the wrong side that morning or who may not like your face etc, but please don’t vent your anger and fear towards pensioners.

    • stumbling in flats says:

      This was entirely not my intention – I was highlighting an example of a universal benefit, paid to all, regardless of circumstances. I feel the same way about child benefit, in that it should be means tested. I have worked my whole life too, and paid in all my contributions. The state pension IS a benefit and is classed as such. Those of us who work all pay in to the system, in the hope we can benefit later. Some of us don’t. But we will all receive it automatically by dint of turning a certain age.
      When talking about the ‘Welfare Bill’, people are often surprised that the huge figures actually includes the state pension.
      I pay in to the system not only for my future pension but also for support I need right now, which includes PIP. So I don’t understand why illness such as MS (and Parkinson’s, Alzheimers, etc) are so minutely scrutinised. In fact, in the DWP’s own guidance, they state there is no real need to keep reassessing people with these illnesses, and certainly a decision can be made through the very detailed forms we fill in.
      I looked up the foreign aid figure – £13.3 billion in 2016. X

  6. Jaya says:

    Disability benefits are not easy to draw in India too.

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