Applying for PIP - is there specific RA help or guidance

nellooo
nellooo Member Posts: 17
in Work and financial support

Hello everyone,

I'm finally applying for PIP. I've read a few other helpful posts here. I have been advised by friends to try to access professional support services to fill out the form (because its intentionally difficult and it needs some guidance). My first question is whether there exists any support services tailored to RA or similar?

I asked Verve helpline and they just suggested Citizen's Advice Bureau. I imagined there might be a more specific charity for help answering the form but maybe not...

Secondly, I am waiting for my application forms but i was told to start gathering evidence from health providers etc. I wondered what exactly I am asking them to say? For example, should I ask them to corroborate that I am frequently unable to work / or that I am unable to do X. Also, who ideally should I ask.

From what I have heard of the specific PIP questions, they may be difficult to answer if you have a condition that fluctuates. My main issue is fatigue and frequent flare ups but both are quite hard to predict. I'm on Amgevita - my pain is much reduced and my mobility is better (people frequently tell me that I don't "look" ill or disabled). I found a job 3 days a week from home to try to cope but, when I'm having a flare up, even that has become incredibly difficult. Applying to PIP finally because I'm trying to accept how miserable I currently am (a year after my diagnosis).

Thanks in advance for any help and advice. 😊

Comments

  • PeterJ
    PeterJ Administrator Posts: 970

    Hi @nellooo have a look at the following - it might help a bit and hopefully others will share their experiences as well.

    https://www.versusarthritis.org/about-arthritis/living-with-arthritis/financial-support/

    Good luck

    Peter

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • Dennison72
    Dennison72 Member Posts: 14

    Hello @nellooo

    I have just been successful in getting PIP with RA. I sent them the How your Disability affects you form plus a diagnosis form from my Rhumatologist. When I wrote how it affects me I told them how a day feels when I have a flare as I believe you have to feel in pain or have trouble doing tasks for at least 50% of the time so always use a bad day as your answer. I need help from my partner to do things like hold a pan of boiling water and chop vegetables. I need help getting in and out of the bath plus have some disability aids. I used to work full time but have cut my hours by ten. My job is using a touch screen till as I don't have the movement to complete other tasks. I don't think there is a particular service for RA but there is a lot of handy information out there. Not sure if I answered your questions but I hope it helps. Good luck.. ☺️

  • Naomi33
    Naomi33 Moderator Posts: 462
    edited 22. Jul 2023, 11:23

    Hello @nellooo

    I recently applied for PIP through Welfare Rights in my area. The team discussed my issues and completed forms for me. They then sent them to me through post to be signed and I forwarded on to DWP.

    They then followed up after 4 weeks for update and have kept in touch and supported me with all my concerns.

    Hope this helps ???

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm


  • nellooo
    nellooo Member Posts: 17
    https://community.versusarthritis.org/discussion/comment/710364#Comment_710364

    Thanks for this advice. This sounds similar to me - in terms of daily difficulties cooking and washing - having reduced work hours and also having to work around my limited mobility at work. I'm glad it sounds like you didn't have too much trouble getting PIP! Can I ask (if this is not too invasive) how many points you scored on the form - and how much money you receive from PIP? Many thanks for taking the time to respond to me. all best,

  • Dennison72
    Dennison72 Member Posts: 14

    @nellooo hello.

    I got 8 points for Daily Living and 4 points for mobility so I didn't qualify for any money for mobility.

    I got the Standard Weekly Allowance.

    Hope this helps 😊

  • Redlady07
    Redlady07 Member Posts: 25

    PIP the bane of many of our lives and yet what keeps me alive. Fill it in, but if you have difficulty writing get someone to write for you (and state that - there is a space for it) Read the whole thing through first. Tackle it with a freind or spouse who knows you well.

    Answer the questions as if on your WORST day. Don't be afraid to qualify what you say ie. Yes I can walk 10 metres if its flat, dry, but Iam in agony.

    When it come sto aids think about your daily routine - electiric can opener, grabber, jar opener? The small things are as much aids as a wheelchair or a stick. And ask your other half, they sometimes see you struggling and you just forget...

    Get as much supporting evidence - letters from concultants, pysio, OH as you can. PHOTOCOPY EVERYTHNG, cuz the DWP are notorious for losing stuff. Keep a record of when you sent stuff (recorded delivery) and when and who you spoke to on the phone. Good luck!

  • Buzz10
    Buzz10 Member Posts: 25

    I have been advised from a friend who is a nurse to apply for PIP. I have major anxiety of phone calls, unless i know the person i am calling. I applied for the postal version early August, and have heard nothing. I tried the text number the other day, and again heard nothing. I have plucked up the courage to try the phone line but just on hold and the fact it doesn't give any time length of how long is left is annoying. Not to mention every time they stop to say "we know you are waiting to speak to an agent" i think someone is going to answer.


    Anywhere online i could try?

  • Anitalorraine
    Anitalorraine Member Posts: 4

    I work to citizens advice - there are descriptors on their site - we always recommend clients to keep a diary for a month that way you can tell the experience of your worse days. It’s not about what condition you have it’s more to do with how it affects your everyday life and how much more difficult it is for you to do tasks than a person who is fit and well.

  • Anitalorraine
    Anitalorraine Member Posts: 4

    You can apply for PIP online but your claim will not be backdated.

  • Louisa77
    Louisa77 Administrator Posts: 264

    Hi @Anitalorraine

    Welcome to the Online Community.

    Thanks for posting on this thread to support.

    Best wishes

    Need more help? Call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm


  • Anitalorraine
    Anitalorraine Member Posts: 4

    You can apply for PIP online but your claim will not be backdated. Only in some areas though.

  • Anitalorraine
    Anitalorraine Member Posts: 4

    I work to citizens advice - there are descriptors on their site - we always recommend clients to keep a diary for a month that way you can tell the experience of your worse days. It’s not about what condition you have it’s more to do with how it affects your everyday life and how much more difficult it is for you to do tasks than a person who is fit and well.

  • FULLTIMER
    FULLTIMER Member Posts: 9
    https://community.versusarthritis.org/discussion/comment/710412#Comment_710412
    https://community.versusarthritis.org/discussion/60619/applying-for-pip-is-there-specific-ra-help-or-guidance

    don't totally rely on getting help filling in the forms, although I would say that is the way to go I've just used a local advice center to help fill in mine they even sent them off for me, you will still need to have an assessment this used to be in person but mostly over the phone these days this basically goes over everything you have put on the forms and some very tedious questions on how you do things such as wash, dress, cook etc even how you manage using the toilet. I had an assessment last week over the phone this alone took an hour and a half they seem to be trying to find out what you can do rather than what you can't

  • nellooo
    nellooo Member Posts: 17

    @FULLTIMER thanks - I now have a PIP phone assessment booked in for later this month. Do you have any advice for preparing for it?

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