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Personal independence payment

spike1973 Member Posts: 2 Listener
I’ve beern on DLA for a very long time and had to appeal to get the higher rate of care and since been assessed for PIP and they say that I’m not eligiable to claim it despite having severe Epilepsy, hydrocephalus and now Ménière’s Disease I think this is a ludicrous decision. 


  • cfd42
    cfd42 Member Posts: 7 Listener
    It's disgraceful. I've just had all of mine refused. I was high rate care and low rate mobility. An assessor came out last week and now they're saying I'm not entitled to anything even though I told her I'm getting worse
  • Matilda
    Matilda Member Posts: 2,610 Disability Gamechanger

    Are you going to ask for a mandatory reconsideration?
  • cfd42
    cfd42 Member Posts: 7 Listener
    Definetley. I think it's terrible the way sick people are being treated
  • Matilda
    Matilda Member Posts: 2,610 Disability Gamechanger
  • mikehughescq
    mikehughescq Posts: 8,847 Connected
    The key is to focus your MR on the consequences of your conditions not the conditions themselves e.g. things just got easier for some people with epilepsy since the recent decision of safety. If you have little to no warning then there are points to be scored there.
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 Disability Gamechanger
    So sorry to hear this, @spike1973, that must have been really frustrating to hear. It seems that changing from DLA to PIP has been a nightmare for many others too. Let us know if there's anything we can support you with.
  • Ragdolly
    Ragdolly Member Posts: 1 Listener
    Spike there should be a disability advise agency in your area who can advise you & help you in all apects of living with disabilities & they will fill in forms for you, they know the points system (sometimes it's just down to filling in forms correctly)
    There has been recent changes concerning claims with epilepsy too, phone your local council or the Citizens Advise Bureau for their name & telephone number
    All the best
  • TheIceQween
    TheIceQween Member Posts: 3 Listener
    I have been in dla for a long time and it's not changing over to pip, I have to go to dartford tomorrow for an assessment and I used to be on high rate mobility middle rate care and I am so worried that they will say I'm not entitled to either I am slightly dyslexic and I can't read and write properly I feel I may have not filled in the form correctly or understood the questions and if it gets stopped I am going to be housebound and unable to live. My daughter is my career she don't live with me but she comes to me to help me wash, dress, cook and clean for me helps me so much.
    I am so scared as I have heard of so many ppl who was on dla being refused this new pip thing.
    I can't sleep at the best of times bit this is just keeping me awake with stress of some penpusher who don't know me or my pain and problems taking one look at me and saying u look ok and fit enough not to get this.
    Just because I don't have a missing limb or anything like that don't mean I'm not disabled. Fibromyalgia and lupus, colitis is an unseen disability and living with it day in and day out is dibilating and isolating as u can't see it. 
    Can someone please give me some advice of what I should say or do to make them understand my problem.
    Thank you. Xx
  • mikehughescq
    mikehughescq Posts: 8,847 Connected
    edited November 2017

    If you haven't already, then figure out which areas you ought to score points in and take them in with you on a small card or your phone in order to remind you. Make sure all areas are covered.

    Take a copy of your claim pack and any other evidence (medical or otherwise) which you sent in. This can be used to point out anything they conclude which obviously contradicts existing evidence.

    Take someone with you if you can. Make it clear at the outset what they're there for and insist that they get their say at the points it matters and you might be struggling to articulate something. They should not talk instead of you or constantly across you or the assessor but they should be able to talk for you when you say so.

    Be aware that whilst provider guidance says they should not take a snapshot they are allowed to make informal observations and may well be doing so as you approach the building; the waiting area and then move into the room when called. They will also be watching what you do in the meeting.

    Do not allow words to be put into your mouth and remember that if you can't do something more than 50% of the time or reliably, repeatedly, safely or in a reasonable time then you can't do it. So, if you can walk 50m but not repeatedly and they say "So, you can walk 50m" you need to come back with "No, I cannot walk 50m repeatedly" and so on.  

    Do not assume because they are a registered medical professional of some kind that they will know anything about your conditions. They have around 7 working days training and that's mostly around report writing not different conditions. If you don't tell them then you cannot assume they will know. Just as your GP is not a specialist nor are the assessors.

    If you have already given them up to date medical reports which include functional assessments (things like the extent of flexion, eye and ear tests) then you should always query why they're doing them in the assessment. They have to get a separate verbal consent from you to do such tests (as the assessment is NOT a medical) and note it down. If they ask you to do something but you do it with the hand or leg you don't normally use then remember to tell them that. Ask them for the specifics of what they record on any functional assessment. This is useful as, for example, if you know your hearing is one thing and you have given them up to date information from an audiologist, it's handy to point out any discrepancies with what they've recorded.  

    Make a careful note of when it started and finished; the name of your assessor and their normal profession.

    At the end ask them how many areas they have scored you points in and, if it's less than the number you have, then ask to go back over it to make sure they haven't missed anything. No point asking them about points as they make recommendations and DWP then make the decision.

    DWP decision making on PIP is appallingly poor so don't expect miracles. Just be prepared to challenge any negative initial decision with a mandatory reconsideration and then appeal and ensure you secure yourself representation in person for the latter. For all the scare stories about PIP, most of which are credible and true, some of what is said is wholly incorrect. For example, whilst significant numbers have been losing Motability vehicles there are no figures on how many would have lost out anyway on their DLA renewal. Also, the cost of PIP is currently running somewhere between 118% and 135% of what DLA cost. Some of that is undoubtedly because more people are qualifying with specific impairments who may have not done so before or are being awarded higher amounts than for DLA.

    Above all remember that the assessor is not the decision maker. This is just the next part of the process and you will have plenty of opportunities to challenge and get the best decision you can.

    Hope that helps and I hope it goes okay.


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