DLA and PIP taken away - cluster headaches — Scope | Disability forum
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.
Please read our updated community house rules and community guidelines.

DLA and PIP taken away - cluster headaches

lisagm
lisagm Community member Posts: 26 Listener
edited September 2017 in PIP, DLA, and AA
I am a suffer of episodic cluster headaches among other things and my DLA/PIP was taken away in March. I did the mandotory reconsideration to no avail so I have taken it to the courts. A few weeks back I called the DWP as i realised that I hadn't received any of my evidence back and was told it was in the pack that I should of recieved. 132 pages, never received anything of the sort and neither have the courts I was told on my last call. I was also told that a discrepancy had been found and it was in the hands of a assessor. What do you think that means?
«1

Comments

  • CockneyRebel
    CockneyRebel Community member Posts: 5,209 Disability Gamechanger
    Hi and welcome

    First you need to ring the tribunal if you haven't recieved the bundle.
    It sounds as though the DWP may be having a further review prior to the hearing, sometimes they will do so and make an award which you do not have to accept

    CR
    Be all you can be, make  every day count. Namaste
  • lisagm
    lisagm Community member Posts: 26 Listener
    Hi thank you for responding, the DWP rang the tribunal services and was told that no pack had been received that's when they told me a discrepancy had been found. Not sure whether to worry even more!
  • steve51
    steve51 Community member Posts: 7,153 Disability Gamechanger
    Hi@lisaga

    A very big welcome to you to our community.

    Wow you have had to deal with a right mess.

    This "PIP" thing seems to get worse by the day !!!!!

    Please please let me know if you require any help with your next step (court)


  • lisagm
    lisagm Community member Posts: 26 Listener
    Omg that is so kind of you. I don't know where to turn tbh. OUCH which is the organisation for cluster headaches I was hoping they would help in court or someone from headway as i have had/(still got a small amount of )a brain tumour but your help would be very much appreciated x
  • steve51
    steve51 Community member Posts: 7,153 Disability Gamechanger
    Hi@lisagm

    That's no problem at all !!!!!!!!

    Headway is going to be the best place for me to start to help you as I'm a client/staff/board member localy and nationly.

    They will have better info and clout than we will ever have joined together !!!!!!

    We need to make sure everything is covered for you as the court is going to be potently hostial !!!!!!!

    I can contact the national Headway for you and we should be ok with that one !!!!!!

    What was the other one that I can help you with ????

    We will both be way out off our comfert going on our own so we need as much help as we can for you !!!!!!

    I can also contact your local "CAB" for both help and advice.

    Sorry for going on and on !!!!!!!!

    I have just spent time in trying to get things right for you.

    Please please let me know how you feel about things???








  • steve51
    steve51 Community member Posts: 7,153 Disability Gamechanger
    edited September 2017
    Hi @lisagm


    Great everthing falling into place for you !!!!!!!!!!!
  • lisagm
    lisagm Community member Posts: 26 Listener
    There is only one major problem. The DWP Haven't submitted the 132 page long evidence papers to the courts or to me so I am still none the wiser as to when my Court date will be. How can I ask a professional person to clear there diary for as long as the DWP want to play with my life!
  • Matilda
    Matilda Community member Posts: 2,593 Disability Gamechanger
    @lisagm

    I doubt you'll get a Court date until the Tribunal receive the 132 pages of evidence.  Suggest you ask DWP if and when they are going to send this.  And what the nature of the 'discrepancy' is.

    You can also put questions to benefits experts in the Ask a benefits advisor category of Scope online community.
  • lisagm
    lisagm Community member Posts: 26 Listener
    Im going to leave it until next Monday as i have played it very cool, calm and collected up to now iv been dancing to there tune, just sitting back and watching them make massive mistake after massive mistake.There really isnt much point trying to argue with these minions who are reading of a computer screen and collecting there pay cheque, but if this discrepancy has anything to do with the fact that a OT and not a specialist nurse with neurological experience did my assessment and she really wasnt happy at me questioning how much experience she had with CH Suffers as my GP had to swat up on them. He has two practices amd im still his only CH Suffer! Special me
  • lisagm
    lisagm Community member Posts: 26 Listener
    Half of my ramble is missing

  • Nystagmite
    Nystagmite Community member Posts: 596 Pioneering
    Have you gone through the criteria to see where you'd score points? it's changed a lot. So whilst you may have received it under DLA, you may not get it under PIP, even if your needs are the same.
  • lisagm
    lisagm Community member Posts: 26 Listener
    I have severe nerve damage in my right arm so o get points for helping to cook a meal, dressing, bathing, lifting but cluster headache are so hard to discribe i bearly leave the house!
  • Matilda
    Matilda Community member Posts: 2,593 Disability Gamechanger
    edited September 2017
    @lisagm

    Your disabilities have to apply 50% of the time, i.e. at least four bad days a week.

    Do you use aids to do all these things?  Using aids helps you score a few points in each category if it takes you a long time to complete the activities, or you can't always complete them, even using aids.  

    Examples of aids are: adapted cutlery including adapted food peeler/chopper; long-handled sponge; bath stool or seat; rubber gripper for opening jars including medicine jars/bottles; raised toilet seat; grab handles; clothes/shoes with velcro fastenings/elasticated waistbands, wide necks, clothes without fastenings; front-fastening bra.  

    You have to be able to undertake the various activities reliably: safely, repeatedly and in a reasonable time.   So you might be able to dress yourself but this may take you 30-45 minutes.  And bathing might take an hour, 1.5 hours if you also wash your hair.

    And you must always at least try to peel/chop veg until forced to give up on bad days because of difficulty or because you might cut yourself.  On good days you might be able to complete peeling/chopping but this may take you 30 minutes or more.   You have to try to prepare a simple meal from fresh ingredients to show that you can't do it.

    People have lost points for saying that know they can't peel/chop veg so they don't bother to try and instead settle for a sandwich or a bowl of cereal.  assessors count being able to prepare a bowl of cereal as being able to prepare a simple meal from fresh ingredients!

    And if you haven't yet submitted a diary, send a 7-day one, listing the aids you use,  covering a week shortly before you made your PIP claim to the Tribunal.  Disability Rights site has a draft diary and a good guide to PIP.  Think about how your disabilities fit the various descriptors.

    My use of aids enabled me to score 11 points daily living after assessment and the Tribunal decided to award me an extra two points for food preparation, giving me 13 and so putting me in the enhanced category.

    So even though you have scored 0 points in a number of categories, using aids in those categories should gain you some points at Tribunal.

    I was asked if the aids were recommended to me and I replied, no, I decided for myself that I needed them.  I don't think it matters which, just that you need to use the aids.




  • lisagm
    lisagm Community member Posts: 26 Listener
    Ty for taking the time to explain. I have the rubber grip and rubber handled pealer my main aid is my oxygen and if i am going through my cluster if food isnt put on my knee and made to i wouldnt bother at all and live on ice lollys. To exhausted to care let alone cook! Will have more info tomorrow about this discrepancy and something about a task. They Are calling beforr 10.30
  • lisagm
    lisagm Community member Posts: 26 Listener
    lisagm said:
    Im going to leave it until next Monday as i have played it very cool, calm and collected up to now iv been dancing to there tune, just sitting back and watching them make massive mistake after massive mistake.There really isnt much point trying to argue with these minions who are reading of a computer screen and collecting there pay cheque, but if this discrepancy has anything to do with the fact that a OT and not a specialist nurse with neurological experience did my assessment and she really wasnt happy at me questioning how much experience she had with CH Suffers as my GP had to swat up on them. He has two practices amd im still his only CH Suffer! Special me
    I couldn't CV wait, find out more in depth info later thus morning
  • lisagm
    lisagm Community member Posts: 26 Listener
    Update on my PIP.
    The discrepancy was on there behalf and had something to do with the paperwork​ that is for the tribunal. The paperwork is on its way to both me and the courts. Looks like im going to court.
    I will go at them with both barrels now. Asked for my medical records and asked my doc to write me a letter of support. I will be asking the 3 other specialists for letters of support to. No apology for them not actually sending the papers weeks and weeks ago and i know the courts are 24 weeks behind.
  • CockneyRebel
    CockneyRebel Community member Posts: 5,209 Disability Gamechanger
    When you ask for letters of support, explain that it is for PIP and that they need to be very specific about your abilities within the PIP criteria. If you can show them what is required ie download a copy of the B&W self test it will help greatly.

    CR
    Be all you can be, make  every day count. Namaste
  • lisagm
    lisagm Community member Posts: 26 Listener
    Hi can anyone tell me if there is a time limit for pip tribunal.  I'm still waiting and getting nowhere fast. Just ringing the tribunal services as we speak
  • lisagm
    lisagm Community member Posts: 26 Listener
    Just spoke to the tribunal service and pip haven't sent them my bundle and it still isnt booked in 31 weeks this has been going on for. Joke a stressful joke
  • John8378166
    John8378166 Community member Posts: 9 Listener
    I'm sorry to say this how they play those games, hoping you will say forget it. DON'T forget it, they had a responsibility to look after those papers you sent, send a letter with a reference number on it quoting there's if there is one from DWP paperwork you received. Also send a letter with same reference number, yours & DWP, I'm sure they will sort it out. I feel if you do this someone will get a good shaking up about this unprofessional & may I add a sad event.

    Take Care,
    John

Brightness

Complete our feedback form and tell us how we can make the community better.

Do you need advice on your energy costs?


Scope’s Disability Energy Support service is open to any disabled household in England or Wales in which one or more disabled people live. You can get free advice from an expert adviser on managing energy debt, switching tariffs, contacting your supplier and more. Find out more information by visiting our
Disability Energy Support webpage.