How do I explain how I feel to PIP

Nannyish

Hello, I have rheumatoid arthritis for 9 years now, and I still find it extremely difficult to explain/ fill in the endless forms for PIP benefit. Am I the only one who feels like you are not believed? I always feel like they think I’m making it up.

Tom

Welcome to the forum, @Nannyish . You have had RA for 9 years and feel diffident about getting involved. Let me assure you that this is a safe, welcoming place where you will find friendship, help and advice.

 You also report difficulties in filling in a PIP application form. I suggest that you contact our helpline on 0800 5200 520, or try your local Citizens Advice Bureau.

Good luck,

Tom, Moderator

Nannyish

Thank you very much Tom, I will give it a ring

scotleag

https://community.versusarthritis.org/discussion/57788/how-do-i-explain-how-i-feel-to-pip

Hello @Nannyish No, you're not the only one who feels they're not believed. I was the same and I expect many others feel the same way. My experience may be of some help to you. It's quite long but I think the more I say of my experience the more it may help.

I was diagnosed with RA in 1994 and received lower rate DLA for care from 2000 onwards. I had no idea I qualified for it until my GP told me I should be receiving it. I also have epilepsy and glaucoma but the award was for RA specifically. Nothing else. In 2019 I was told my DLA was ending and I had to apply for PIP. Having looked at how PIP works I thought I'd be eligible for the lower care level there too - though financially it was the equivalent of middle rate DLA. I filled in the forms as best I could but my interview was an absolute nightmare. It was late afternoon and I got the feeling straight away the person doing the interview just wanted to get their day finished as soon as possible. There wasn't even a polite welcome or explanation of the interview process which might have helped me feel at ease. She was brusque and ill-mannered from the start. From the off the atmosphere was dreadful. I'm usually quite a confident person at expressing myself and interacting with others, not normally nervous at interviews but this time I was. I was asked what I thought were totally irrelevant questions like what kind of books I read. What was I currently reading and so on. I got so flustered I couldn't even remember the name of the book I had by my bedside.

Afterwards I thought maybe I was just being paranoid but then I got the results of the interview. Zero points. It made me think the person interviewing thought I was a fraud. I felt absolutely terrible but decided to pursue it and ask for a mandatory reconsideration. This came back refused. I'd had RA for 25 years and recently been put on Methotrexate as it was getting worse. I thought how can I possibly have been eligible for DLA all those years and now in my sixties with it getting worse I was basically being told there was nothing wrong with me.

I decided to appeal, reasoning that all I had to lose was my time spent preparing my appeal and half a day at the Tribunal. I wrote a detailed appeal, including my medical history since diagnosis (as best as I could remember) and said how it was affecting my daily life. At the Tribunal I basically related the same and answered questions.

I won the appeal. In fact I was awarded higher rate care AND higher rate mobility (the latter had nothing to do with RA, the Tribunal considered the epilepsy and glaucoma neither of which I'd mentioned when making my initial DLA application). I walked out of the tribunal elated. If I'd been awarded enough points to qualify for middle rate care PIP after my interview I'd have been delighted. The absolutely horrible person interviewing me had actually done me a favour. Though I went through several months of feeling hellishly low after that interview.

I didn't do anything special. I simply related the facts both on paper and in person as to how my daily life was affected by RA. The difference was that one person had decided from the start not to believe me but the three people on the appeal did.

No one knows better than YOU how RA affects your life. Be open and upfront about it. Believe in yourself and others will believe you too.

I hope this helps.

1961

So glad you got a great outcome, yes I was made to feel as if I was lying, I am now on depression medication due to feeling so inadequate and not being believed, especially as I had all the relevant medical evidence, all because I was unable to verbally explain how I was feeling. Thank god for my daughter who was able to help me apply again , so yes I feel for you and anyone else who is made to feel this way all the very best

Spud63

I have spinal stenosis and have been suffering for about 14 years now. I am also dyslexic and can't cope with filling in forms and interviews. I have spent a long time working for college's and they have supported me to deal with working with my pain levels. It was due to COVID we decided to re locate to Pembrokeshire and take early retirement. I applied for some support and was turned down, made to feel like I was making it all up. Got angry when I was phoned and told of the outcome (didn't help at all).

I now work 3 days a week on minimum wage and take the rest of the week resting and getting over it before starting again. I fully understand how you felt and I am very pleased you got it sorted. Dose make me feel like this is all that's left and that's just not right.

Marie10010

Hi I applied for pip and was turned down I am in constant pain and struggle from day to day I have osteoarthritis in my hip and musculoskeletal in my lower back. I cant have inflammatory medication due to having copd and causes problems. I had an assessment for pip and it was failed only gaining 6 points. I was laughted at asked what my favourite food was. Made to feel like I was a liar. I was asked what medication I took and took her 2 30mg of codine for the pain 4 times a day . Was told I didn't take that amount. My mental health is so bad due other factors and afterwards had to be given medication due to the way I was made to feel I also found out they don't even get the information from your doctors. I asked for a reconsideration but that was refused due to no further information being sent but this was due to the doctors advising that they would be contacted directly by dwp which never happened I have since appealed and sent the court a print out from my doctors with all my conditions and a covering letter. The dwp have until the 10th August which is tomorrow to respond. Don't think the dwp reliease how they effect people not only physically but also mentally

Buncrana

I have had arthritis now for years, sometimes good sometimes bad, on the bad days and weeks, I can spend all my time in bed, on pain relief, and feeling awful totally and utterly awful, I applied for help as I am self employed and as such cannot work when things are bad, they turned me down for PIP to be honest, I felt so angry I gave up, Mum took over, she knows how I suffer and she is in the throws now of appealing, why can someone, who has no idea of how life is for you, turn you down, and say sorry but get on with it ? Its bordering on cruel, it really is, If I did not have my mum to help then God knows how financially I would be surviving,

Peawhips

Hi

He you tried cab ( citizen advice bureau) they are very good they hzve a benefit advisors who can help you with benefit forms inc pips also advise upu how to cope with your assessment also appeals as well. I always use them for help with benefits i had to move from dla to pips whilst during covid but it was delayed until the november. I got intouch cab they booked a call back from the benefits advisor she told me to drop the forms into the office for her and she filled them in sent them back to mevto check and sign. All you need is to tell the advisor how illness is affecting.you send your spare or photo copy your medicine repeat prescription and any recen letters from hospital send them with your form and the advisor will see if any suitable. I thought i wouldnt get it but suprised i hot standard care and highest mobility part as well ended getting more on pips then did on dla also dwp sent me znothrr for for aevere disability premium benefit as well which i successfully got. Hope this help do try cab

Fif

Very much agree with Peawhips. I was a general adviser for CAB and assisted clients with the completion of their Pip forms. The main problem was persuading them to tell it how it is rather than trying to put a brave face on things. You also get used to wording things to emphasise the problems. Even then, sometimes applications were unsuccessful but with the help of our specialist benefits adviser, (a retired GP) the majority of claims were won on appeal. Try CAB. I'm sure the support, practical and personal, will really help.

belpop

a few years ago I tried for pip and ask the cab for help with forms I was told it's best to fill in yourself and trehey send me a txt with a link to a Web site in the end I decided not to as I was turned down a few years before for prolapse disc and was made out to be a lier

MoWW

Hello @Nannyish

I am not sure if you have read the booklet on claiming PIP that NRAS produce. This can be helpful to guide you through the application process. https://nras.org.uk/product/personal-independence-payment/

Hope this helps.

@MoWW

catwoman

Hello nannyish I understand your frustrations with PIP and how difficult the forms are to fill in. I have tried twice to get this and have been refused both times - I have osteoarthritis in my knee. I have now written to my MP to see if she can help. What is so annoying is that there are people getting PIP who shouldn't be but because they know how to play the system they get it. The genuine people who need it are not getting it, this country wastes so much money on people that shouldn't be getting certain benefits.

TUL50

My Mum told me to apply for PIP because I would probably get it. However, I cannot get my head around it all - I can walk for about an hour before I have to give up (prior to cancer treatment I could go all day), so rely on a mobility scooter if we are going out for the day. My feet do sometimes feel like firebricks and nails and those are not so great days and the feeling doesn't last all day. I used to be able to parkrun (5k), but now I have to walk it. Prior to my RA diagnosis, I was at the point where knitting, brushing my hair, walking, pretty much doing anything was extremely painful. Now I'm on hydroxycloraquine and Methotrexate (H&M) plus folic acid, I can do most things without pain apart from the walk all day thing. So do I apply for PIP because without the medication I would be an overweight pain baby? I can still do my job as a School Librarian, but I'm limited in how much I can lift since I also have lymphodoema in one arm, so that one is useless! BTW, I have a blue badge, purely because I had mobility issues while undergoing cancer treatment during lockdown and those issues continued until my RA diagnosis. I don't want to apply because I don't think I qualify, but when I think back to how much my quality of life degraded until I got H&M, I'm not so sure and think there are those of you on here who are probably more entitled to it than me......

slinks

https://community.versusarthritis.org/discussion/57788/how-do-i-explain-how-i-feel-to-pip

Hi, please don't worry I sometimes feel these forms are designed to make you lose heart! I have a son who is severely disabled with brain damage from birth, and the rigmarole of filling in the same form every few years is really depressing - No, he hasn't suddenly regained his sight or learned how to walk, Yes he still needs 24/7 support!! That said, I had to swap from DLA to the new PIP some years ago; I had been told how unfair the system was and was extremely concerned, but my assessor on the day was lovely. I produced pages and pages of evidence in advance, including medical reports as far back as I could find them, and was awarded higher level mobility and care after just one interview. I asked for a transcript of the interview, maybe that is why I had no issues with information I felt was disregarded or recorded incorrectly. Good luck, fill in all the sections explaining how your RA affects your quality of life and fingers crossed they will come to the right decision first time round.

MoWW

In addition to the NRAS PIP booklet I mentioned in an earlier post on 8th December, consider looking at some helpful advice such as ; https://www.scope.org.uk/advice-and-support/tips-for-completing-pip-form/

There is a really helpful video which talks you through the form. https://youtu.be/ZDkurvvN5VY

When completing the form, it can help to create a simple Word document on your computer or writing it. Add extra information for each question you wish to elaborate on, as it can often be difficult to fit it in the space that is provided on the form. Make sure your contact details and National insurance number is on the form and stapled to it to ensure this valuable information is considered.