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Mobility component refused

lynnieblynnieb Member Posts: 3 Listener
Hi to everyone, I'm Lynn and have just joined. 
I am after some advice on PIP. I was on. DLA for years, high rate care and mobility. Then I had to apply for PIP. While I continue to receive care component, I'll no longer get mobility. 
I have neurofibromatosis type 1 (genetic condition, where tumours grow on the nervous system). I have hundreds of tumours on and in my body;  face, head, neck, torso, legs, and soles of feet. They are painful, and can bleed a lot if knocked. This condition has also caused scoliosis, I had a phaeochromocytoma, and my right arm/shoulder are paralysed due to a brachial plexus tumour (which recurred in 2002). I have many complex issues due nf.
I also have blood disorder essential thrombocythaemia, which is very high platelets and clotting issues.
I take lots of meds including oxycontin oxynorm, aspirin, sertraline, nozinan and propanalol. These affect me by causing dizziness, extreme tiredness (I've literally fallen asleep standing up) nausea etc.
I can no longer go out on my own and usually only go to local shops. I can't get on buses any more, meaning I'm limited to where my dad can take me
Not having the mobility benefit now means I lose my blue badge and around £200 a month, so taxis are out too.
I asked the DWP to look at the decision again, where they lied on the letter they sent. They claimed I walked freely around my lounge with no dizziness or support. I never moved from my chair and the assessor didn't ask me to, so it is an absolute lie. What else have they lied about?
I have phoned welfare rights, but any advice would be extremely welcome. Sorry for the long message


  • wilkowilko Member Posts: 2,284 Disability Gamechanger
    Hello and welcome, you now have to request an MR you have a month to do this since receiving your award notification letter, details are enclosed in your award letter. As for your blue badge this will run until it’s expiry date then you will have to reapply.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger

    PIP isn't about a diagnosis, it's how those conditions affect your ability to carry out daily activity based on the PIP descriptors.

    As you've already asked for the MR which the decision didn't change you now have 1 month from that date to request the Tribunal.

    You say you can't go out alone, may i ask what the reason is for this please?

    You also say you're unable to walk so i'm assuming you're claiming PIP for physical conditions, is this correct? If so then it's the "moving around" part of mobility that you would potentially score points for.

    Appearing in person at your Tribunal hearing will give you the best chance of a decision in your favour. Do be aware that waiting times for hearings are huge in most areas and lots of people are waiting a year for a hearing date.

    Community champion and 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.
  • MisscleoMisscleo Member Posts: 646 Pioneering
    Hi you may not loose your blue badge. 
    Councils make up their own rules and with some if you get at least 8 points you can keep your blue badge so please do call your council and ask.
    Good luck
  • lynnieblynnieb Member Posts: 3 Listener
    Thanks for that. It is so stressful at the moment. Just don't know how I'll manage on such a pay cut
  • lynnieblynnieb Member Posts: 3 Listener
    Poppy, I have tumours in my spine, legs and on the soles of my feet. My spine is fused too and I am osteopoenic. All this makes walking difficult,  painful. If I drop something while I'm out, it stays on the floor. I can't access my medication as I only have one working arm, and I have had carpal tunnel in that. I have other issues too,  such as extreme tiredness, dizziness, nausea. My eyesight is poor, as a facial tumour is obstructing sight in left eye. I am depressed, stressed, and when the DWP phoned me, she basically called me a liar. No matter what, treating a chronically sick person like that is awful. I just can't cope with it all
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @lynnieb and a warm welcome to the community. I am sorry to hear about the decision and how much of an impact this is having on you. Unfortunately most decisions are changed at a tribunal level. Here is some information about the process. :)
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