After 12 years of being quite poorly and diagnosed with Lupus 6/7 years ago, ( but still managing to work) got to the point where I feel I want to try and claim PIP. I’ve never claimed anything and not sure what I need to give, I’ve phoned the DWP and they are sending me a claim pack.
I have med letters going back the 12 years, stating I have lupus, and letters for surgeries and conditions I’ve had/got ( meralgia parasthetica, lymph node biopsy, hand surgery, etc..) but nothing to show I have a compression fracture in my spine, or that I’ve just had gynae surgery that prevents me from ever doing any lifting/carrying.
I don’t know who I should ask to verify that I have had/have those conditions/restrictions. My GP, or my rheumatologist? I don’t mind paying for a letter or statement but don’t know who I should be asking.
I gather from what I’ve seen here it can be very difficult to get PIP, and I may not qualify, but I think it’s time to try. It’s got very difficult for me to carry on a ‘normal ‘ life, I’m getting less able all the time.
Any help greatly appreciated
Jo x
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joanneM200
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I’d recommend when you have your forms booking an appointment with your local CAB to help you fill out the paperwork, they normally have a specialist who is used to doing this and know the right terminology to use. They can also advise of what paperwork to send in with your application.
I am still not sure if I am really ready for PIP, but my daughter has been saying for a couple of years that I should apply ( doesn’t live with me but helps me every day)
I gather it’s quite a difficult process and I’m not sure I can cope with any extra difficulty.
I’m trying to gather all the evidence I might need in advance of the form arriving,
I’d take the view I think that you never know until you try. The CAB can complete your form for you and advise you too on the assessment process so hopefully take some of the stress away.
I know these things are daunting and can feel overwhelming on top of all our conditions, but if you are successful hopefully that will ease any financial pressure for you and maybe enable you to get extra help at home.
I think your best bet is to ask your GP for the evidence you don’t have. They will have all your notes so can give you copies which will hopefuly support your claim. The CAB will help you best with your form because they have all the descriptors that the forms don’t give out and will help focus you on how your condition impacts on your daily life.
First of all, remember PIP is non-taxed , needs based and not means tested. Whether you work or not, it is a payment to help you with additional expenses arising from your disability.
I don’t know where you live, but your local council is likely to have a Welfare Rights Officer. They specialise in PIP as well as additional benefits people are entitled to. CAB can be busy.
I found the two I used were invaluable. They understood the “quirks “ of the application questions, will draw out from you exactly the problems you have on your worst day, and use them to to tott up the necessary number of points from which they can tell you the size of payment you might get.
Together with the application, add the medical records that support your case.
From there, if accepted you go onto the face to face assessment. My first was undertaken by a young women who seemed to have a clear understanding of my difficulties. I was awarded what I needed at next stage.
My second was an experience with a part-time Daughter of Darkness who seemed to have come into work that day determined we were scammers.On reading DoD’s assessment my friend who accompanied me was aghast. Four straight out lies on her side and a distinct tone that suggested ai was a fake. of disapproval that I was a fake. The gross disservice and four large lies made me return to a WRO, who prepared me for Tribunal
I pressed ahead to Tribunal , nervous and angry that there was a suggestion from DWP that it seemed I should have to repay some of my previous payments. The judge asked me to sit down, and unless I had any questions, he was happy to award what I needed. I was glad of the financial award, and thrilled by being treated as honest and truthful. I put my head on the desk and cried, asking why on earth were we treated that way? The judge was clear he found the system very flawed, a waste of his time and a cost to the Government
They will send you guides which tell you question by question how to answer each question and what pitfuls to avoid.
Also never ever send in your application until you have all your evidence and can send it in along with the application. Even if it means delaying sending it in. Also get a copy as they have a tendency to “lose” applications. Send it by recorded delivery so you can prove who signed for it!
Your GP should be able to supply you with all copies of letters that have diagnosis. I’d go to your surgery and talk with them so you can explain exactly what you need. If your surgery is online you should be able to get your medical record there with copies of all letters there too.
I’m in the process of trying. It’s not quick and just try and take the attitude that you are entitled to it but it’s going to be a chore and relax about it.
I’ve already been knocked back after having an assessment as I was able to read my own notes! Of course I have notes I’ve had a complicated medical condition for 30 years and can’t remember it alll.
I’m now at the send a reconsideration letter and then it will go to appeal.
I’m sticking it with it as you should do. It’s a ridiculous system but we can’t change that.
I’ve read stats and been told that quite a high percentage get knocked back deliberately as 50% of people don’t appeal!
Stick with it good luck just treat it as another job on the list to complete
Good luck with your claim, it’s not as bad as you’re imagining.
Don’t worry about any supporting evidence you don’t have as if you tell them that on the from, they will discuss it with you once the initial phone assessment takes place.
Just send what you have for now so you can get the process started. If there’s anything else they want to know, they will contact you.
It is quite a big form to fill in, but just do it a bit at a time, keep it succinct, using the same answers & key phrases, repeating yourself - as the questions do! The answer boxes are very small so only warrant bullet point answers.
You can use the same replies to a lot of the questions …Eg Pain, fatigue, have to rest.
Don’t bother with the blank section where you can add anything extra - there’s no need, as it won’t necessarily make any difference to your claim anyway. Plus, once they see you/speak with you, they will make their own judgement anyway.
Up until 3 years ago, my husband who has RA, worked full-time as a Senior Manager, in a high-pressured environment earning a decent salary, he loved his job & had worked hard to get where he was. Aged 59 then, he’d worked non-stop since the age of 16 , (1 week sick leave in 43 years - glandular fever 1980s),
Due to his worsening RA, he had to step down from that role, found an alternative 16 hours a week, closer to home part-time job, (loves it & calls it, “His hobby,” & now has Rituximab IV infusions + DMARDS + Meloxicam + pain meds as treatment.
PIP states that it can be claimed by people in employment.
Reluctantly, 3 years ago, he claimed for it but was denied, he didn’t appeal.
A year or so later, he claimed again = denied!
He decided to appeal = denied!
They said because he was managing to work, drove himself the 5 minute journey there & back, he did not qualify for PIP. He works 4 hours x 4 days.
He’s almost 63 but won’t get his State Pension until he’s 66.5 years old, so he’s had no option but to start drawing from his Personal Pension. We’ve always paid our way, saved, done without, own our own home, not had handouts/means-tested benefits & worked hard for all we have. I still pay for prescriptions (have a PPC), but at 60, hubby got them for free! 🥳
He’s NEVER claimed a single state benefit! ….. The system is so unfair ….
At the time he was so annoyed, he contacted our local MP about it, but despite his empathy, couldn’t help.
He says he won’t bother reapplying as PIP converts to Independence Allowance at age 65 & he’s planning on working for as long as possible because he enjoys it.
He mainly filled in his claim form himself; doing the job he did, he didn’t require CAB help, used his own words, answered honestly, didn’t make anything up, sent appropriate evidence. I assisted here & there (retired Paramedic), so his form was thoroughly & appropriately completed, especially as due to his gnarled RA, sore fingers & poor grip, he had to take breaks from it, so I wrote for him.
Take screenshots/photos so you’ve got copies for your own reference.
Try not to worry & fret over filling it in, it’s just a process which you’ll either qualify for …. Or you won’t 🤗
In my experience of using CAB/Age Concern to assist in form filling, it was more trouble than it was worth! As good as they are & many have benefited from their services, they let my poor Dad down when I sought their help for him - Lewy Body Dementia. Denied him Attendance Allowance despite me caring for him, washing, shaving & dressing him!
Redid the claim myself in the end, appealed & rightly so he was eventually awarded it, sadly he died 2 years ago aged 79 …. He retired aged 74 ….. Had never claimed a single benefit in his entire working life, nor my Mum who died of cancer aged 59. She was even paying for her chemo prescriptions up until she became terminal….shocking system. My parents were self-employed, worked like trojans & were penalised for doing so….
There are lots of useful websites if you need them for assistance, (see links below, but there’s nobody better than yourself to describe what life is like for you, how you feel, what you struggle with on a daily basis & what help you require even if you don’t actually get that help.
There’s probably info somewhere on Lupus UK too (sorry, not checked).
turn2US.org.uk
mentalhealthandmoneyadvice.org
I know I’ve waffled on a bit, but your post provoked some strong feelings for me about the unfair benefits system in the UK.
I'm in the same position Joanne. I'm about to have an assessment for a Blue Badge and I now have the paperwork for Disability benefit as well. I'm very worried about this first assessment let alone what applying for financial benefit will be like! This after 35 years of having lupus and pushing through the pain and illness as we all do.
I'd love to hear how you get on, please update us every so often ..... and good luck.
Even if a person doesn’t get any disability benefits at all, they can still qualify for a Blue Badge via their Local Council, (in my area anyway). My husband has done so & I also filled in all the details for my 86 year old neighbour who doesn’t get any benefits either.
You've had good advice here all of which I agree with. I'm just gonna add a couple of things. Don't send any original documents..photocopy them. Also photocopy your form once you've completed it so that you have a copy which you can refer back to before your assessment to refresh your memory. At the top of every piece of paper you submit as evidence write your name and your national insurance number. When you send back your form with your evidence send it Recorded Delivery so that you have a receipt. They will put a prepaid envelope in with the form but it's best if you pay to send it back..then you have proof of sending it.
I photocopy my prescription sheets too as evidence.
Any questions along the way post on here and we will help you ..it's stressful and we tend to downplay our symptoms..in this case you must complete every question thinking of how you are on your worst days. This can be depressing in itself. We can support you through the process. Good luck joanne 🤗💜🌈🦋xx
Hello Krazykat26🐱👋🏼💜You are spot on with this....👌🏽
I thought to give update that I had requested a review for "unplanned change" condition worsened. Already in receipt for Enhanced daily living and standard rate Mobility
I was awarded enhanced rate Mobility, PIP letter received 11 August 2023
I submitted forms 5 June 2023 no f2f or telephone assessment - award given.
I test drove Hyundai Tuscon hybrid last week and due to customer cancelling finance, (usually takes 10 months)my Motability car will be ready 29 September 2023 🥰😇
JoanneM200, please do not doubt yourself. As you know how YOU FEEL. With supporting medical evidence from GP, Specialists, Physio etc. Along with your TRUTH of daily living restrictions, explaining what you can not do normally due to poor health will get you through. Sending Good luck 🍀🫂💕
Hi JoanneM200, I've had lupus for 33 years and only started receiving PIP since 2019. I also have other health conditions. You can put the names and contact details of all your health professionals. There is section on the form to do that. My advice to you would be to describe what you are like, when you're lupus/health at its very worst. Describe in detail what kind of help you need. What you can and cannot do on a daily basis. Don't hold back.Hope this helps. Good luck.
Hi Jo, do you have Patient access app or the NHS app. If not you can download the apps and request access and login details from your gp. You will find all your medical history on there. You can printout your problems plus documents from any consultants etc. you don’t need to pay anyone for letters. That information depending on who you have been seeing should be enough as evidence. Then just write down your every day struggles. Mainly the days you are feeling unwell or your worse. Don’t need to comment on the good days because you will be writing about a percentage of the time. Ie 75% of the time I feel ir 5 out of 7 days etc. good luck
Hi, the most important thing is when you answer the questions about what you can do is to not be the ‘brave soldier’, but seriously about how you feel on your bad days and how that limits you. You will be penalised if you are trying to show all the things you can do. Also be aware these people are not your friends they are there to not give you the PIP and in my case actually lied in the report about what I could do, so be on your guard. Also if the initial assessment does not go your way, make sure you challenge it as they more often than not overturned. I know this sounds horrible and is actually a horrible process to go through when you are at your lowest, but sadly this is the system our government thinks is how sick and disabled people should be treated! I think the one thing these people forget is for many of us who experience such a devastating diagnosis, often after years of being very sick, is that we would all choose to have our health and our old lives back! Anyway good luck with it all 🤞😊
Hi Joanne. You will need all the evidence of existing conditions being treated, dates of x-rays and scans, gp and specialist letters. Anything yet to be investigated is ok to use on the application but you must state how these effect your everyday life.
You should try to get someone to help you complete the application, such as CAB, Welfare rights or local council finance team. They will have a good idea of what will or will not be beneficial to mention.
having had lots of trouble with PIP personnel my suggestions are primarily be very straightforward in your descriptions of the illness and symptoms that bothers you plus how your pain and other issues make you feel, and how they add to your inability to do things be specific and next have several technical letters from GPs and specialists that indicates what diagnosis and symptoms, specifically if they are aware of limitations that it causes for you.
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