Speak Up, Be Heard

PIPSpread the word – cautiously optimistic news – the Department of Work and Pensions are reviewing a recent decision to change the mobility criteria for the new Personal Independence Payment (PIP).

This comes after the MS Society and 50 other charities that make up the Disability Benefits Consortium challenged the strict mobility criteria for PIP and highlighted the devastating impact this would have if it wasn’t reviewed.

For the old Disability Living Allowance higher rate mobility payment, applicants had to prove they were unable to walk more than 50 metres. To receive this enhanced rate under the rules for PIP, this was cut to just 20 metres.

People with MS and other disabilities are now being asked to raise their concerns about these changes. The consultation would like us to answer one question – ‘What are your views on the moving around activity within the current PIP assessment criteria?’

We all know that the particular problem with MS is it’s variable nature. Some people can walk 20 metres one day and yet be unable to get out of bed the next. The very fact people with an incurable illness are being reassessed at all is heartless and the changes are causing unnecessary worry and fear. If a person who has previously been awarded the higher rate of mobility allowance and has a Motability car, they are in danger of losing this vital lifeline if they are reassessed and found not to be eligible under the new rules for PIP.

If you think you will be affected by the changes, you can respond to the consultation by reading it here  (details of where to write to/send an email are at the end of the document) or you can email the MS Society  – campaigns@mssociety.org.uk – and they’ll let you know how you can get involved in the campaign. We need to be quick though – the consultation ends on Monday 5th August.

Anyone who has ever applied for disability benefits knows it is not just a case of filling in a form, nor do we receive free BMW’s as the press would have the public believe in their continued witch hunt against disabled people. If we don’t speak up, we lose our voice.

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22 thoughts on “Speak Up, Be Heard

  1. Samantha Thompson says:

    I am currently filling out the form for PIP, for the first time. It really feels like I am having to justify my life, like I have to convince someone I am ill. Why can’t they just accept a Neuro report and that MS is variable? It is degenerative, progressive, so I really don’t understand.
    I am new to all this, even though I’ve had MS for several years.
    On the Society forum, there have been many people sharing their stories, very few have been positive and I’m sure this is the same across the board for all conditions. It is despicable, with a serious lack of empathy from those in power.

    • stumbling in flats says:

      Hi Sam,
      I completely agree. It’s crazy – if our neuro has diagnosed us with MS and can provide a short report, what is their issue? MS is lifelong, it’s degenerative!
      I do understand that some people apply for DLA (PIP) for all sorts of nonsense but surely something like MS or HIV or Parkinsons should be exempt from having to be reassessed.
      Just another example of the government ‘cracking down’ and vilifying disabled people.

  2. Oh, dear. Best of luck to all who may be affected by this…hoping there is good reason to be cautiously optimistic, but how frustrating that it’s even an issue. Meh, indeed.

    • stumbling in flats says:

      Thanks CrankyPants!
      We’re facing nasty, worrying times here in the UK. From Paralympic glory to the village stocks in less than a year. Double meh!

  3. I hope it goes well…we are all so different…and they keep getting stricter with benefits

    • stumbling in flats says:

      Yup. I think what they’d like would be if all disabled people just stayed at home, tucked out of the way so we don’t offend anyone. Maybe we could weave baskets or watch telly all day – keep the cheesy daytime presenters in a job, lol.

  4. Sue says:

    I’d like to see any one of them trying to walk in my shoes for even just a day I know for deffinate they would soon want to give them back!

    • stumbling in flats says:

      Too right! They just do not have a single clue. I don’t know the stats, but I know a huge proportion of ‘disabled’ people are working/studying/raising families and make a valuable contribution to society. Try doing all that with MS on your back, and they’d soon give up. I’m awfully bad tempered today – everyone’s jumping up and down about our heatwave and I want to chuck ice cubes at them.

  5. Samantha Thompson says:

    Ooh I know what you mean! Every time the weather forecast comes on, I want to run and hide somewhere cool. I live in Kent and it gets damn hot down here, I am dreading it 🙁

    • stumbling in flats says:

      Bless! Kent will be pretty hot, poor you. They keep saying on the news this heatwave will last a month!!! I’ve already seen two shirtless men walk past my house. It’s not THAT hot yet, lol.

  6. I am dreading having to go through testing for PIP. The more I read about the mobility aspects, the more confused I get.

    I might be able to walk a short distance one day, but I can guarantee I will be in pain doing it. If I am in pain no matter how much distance I walk, then what? ugh, so confused :/ i can’t use aids because of my hands going numb, so I would like them to argue I could use a walker/cane, even after physio said not to as I am too young to start and pointless with my hands going numb. Physio and the doctors want me to walk as much as I can, to try to deal with the pain so that I am mobile as long as possible. So because of that, I get lower marks?

    One thing I know for sure is that I am bringing a witness and my Dictaphone to the interview so nothing is left to chance.

    Thank you for sharing that link 🙂

    • stumbling in flats says:

      Hi Jennifer!
      Thank you for your comment.
      I’m dreading it too. On the outside, to everyone else, I look ‘normal’ when they see me. What they don’t see is the days I stay at home and ask my mum to bring me shopping. On those days I don’t move far from the sofa. Touch wood, my relapses have stopped since the Alemtuzumab, but I am still left with the original symptoms, built up over many relapses previously. The main problems apart from the fatigue and cog fog are definitely relating to the absolutely non-stop buzzing and pain in my legs and feet. It drives me to distraction!
      So, yup,how do you convey this at an assessment? I heard that the assessors watch applicants get out their cars and walk to the centre, thereby ‘proving’ that they can walk 20 metres. So they’ve lost even before the assessment. Urban myth or not, it’s worrying.

      • thats the biggest problem I have with this whole PIP thing, a lot of MS symptoms you can not see so how do we get the point across that we do have a disability.

        the pins and needles/ burning feet was the first symptom I had, over 7 years ago. Never gone completely away, but again, its not visible so people can think you are making the whole thing up.

        and now its in my face, which you can’t see either unless i am crying from the pain

        i’ve heard that about the assessors as well, wouldn’t be surprised if it was true :/

        i wish more people were aware of unseen disabilities, not that it would stop all the dirty looks and shouts at people, but it might help.

        sorry, i think i’ve just been in a ranty mood lately :p

        • stumbling in flats says:

          hey, I’m ranty too!!
          Was one of my first symptoms as well and I used to be in tears with it – it seemed to go right up my legs. Pregabalin has helped, but it’s still like a constant ‘pain’ and something that is always, always there. Makes it difficult to walk at times, and with my balance being distinctly odd as well, I look a right sight!
          Hmm. At least we still have two years to go til we are reassessed – hopefully by then they may be more understanding. Or is that me just looking on the bright side??

          • i just started Pregabalin for the pain in my face, so it would be great if it also works with my legs 🙂

            its good to look on the bright side, i’m hoping that by then, the whole thing has changed again, and the government people will realize that there really are not the huge amount of benefit scroungers they seem to think there are and that really, when a neurologist says a person has an incurable disease, that they are right and we are not going to leap up be and be miraculously cured….but i dont see that happening :p

          • stumbling in flats says:

            I don’t see it happening either, really. The press and powers that be have really turned their attention on the ‘weakest’ in society, and all thanks to mortgages and bankers causing the recession. That’s why we have to speak up, I guess.
            The one thing I clearly remember is my GP (who is my age, if not younger) saying to me, ‘So when are you giving up work then?’. I decided there and then to fight back against the preconceived notions of what MS actually entails. it’s been a great motivator and this blog has helped me hugely.
            Fingers crossed the Pregabalin works for you too. I was on Amitryptiline (sp?) to begin with but it did absolutely nothing. Pregabalin has really helped. It’s not gone, just controlled, lol.

          • i was on Amitryptiline, made me into a zombie and i was talking in my sleep. very entertaining i’m told since i was not talking any sense :p

          • stumbling in flats says:

            I never talk sense at the best of times!!
            Mind you, when I’m on steroids I talk more nonsense than usual. And I’ll be having another course in two weeks along with the Alemtuzumab, so that’ll be fun!

          • good luck with that 🙂

          • stumbling in flats says:

            Thank you! I’ll need it – last time I was buzzing around so much, I was polishing my lightbulbs, lol.

          • should video it, could make money from people laughing at it 😉

          • stumbling in flats says:

            No doubt my son will film me and put it on youtube for some extra pocket money, lol.

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