Anyway I rang PIP information and spoke to someone about my difficulty in writing and having no one to do this for me as I’m in isolation.
The extended 3 month period does not help me either as my Cyclophosphamide treatment will last longer than that. They do not have online forms to download ( my sister could fill it in for me through WhatsApp and then she could send it) so I really don’t know what to do.
It’s stressing me out which is not good as stress and Vasculitis do not mix.
I am also on tons of medication which makes me forgetful, confused, unable to concentrate..... the list goes on.
Does anyone have a completed PIP form that I could take a look at as guidance, it so important as I’m struggling financially too.
🙏🏻🙏🏻🙏🏻🙏🏻
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Reggie1411
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As mentioned in my reply to your first question, the form (at least in my case) did not really matter. It's what happens in the face to face assessment.
I think the forms are mostly there to weed out the people with terminal illnesses and those where the form may make them suicidal (this would need to be backed up with a Drs report that proves you've had long term mental health issues with an increased risk of suicide).
Everyone else seems to have a face to face assessment. I sent a few Drs letters that proved I had all the illnesses that I had listed, but they only scratched the surface of how they effect my day to day life.
If you can get a letter from your dr clearly explaining how your condition effects you in relation to all the tasks in the questionnaire, you might avoid face to face, but as soon as you tick a box that your Dr hasn't described how you're effected by said task, they'll need to see you for a face to face (unless you've already hit the High Rate threshold).
It's one of the most stressful things I have been through and knowing I'm already due another review, has me stressed everyday.
I’m not feeling great right now and just need to rest.
I will come back to you tomorrow if that’s ok.
And again ..... thank you so much for your post. It means a lot as I’ve only recently been diagnosed and it’s all so overwhelming and I’m trying to take it all in tbh.
I'd recommend joining Benefits and Work - well worth the money. They have lots of info and tips on filling out the forms and all the latest DWP updates.
As to physically filling out the forms, I told them how long it took me (weeks, a bit a day) and why my writing looked like a dog's dinner (wobbly writing, crossings out and missing words due to not being able to get my brain in order etc.).
Ooh that might work in my favour do you think? I will still be having chemo ( Cyclophosphamide) IV infusion so even with the 3 month extension, I’m still not going to feel great
I’m feeling more positive with every reply. This is a good day for me even if I’m in pain etc
Even better - according to Benefits and Work, face to face assessments have been suspended for the next six months and all reviews and reassessments, including PIP and ESA, for the next three months 😁
There is a very helpful charity group on Facebook called Fightback4justice. You can ring them and they will help fill the form in over the phone and they did do home visits. I’m not sure what they are doing now. It’s worth giving them a call or email. They are very helpful and do much more than I am explaining. Sorry I’m very tired
Bless you for making the effort to get back to me. Thank you so much.
Vasculitis and stress do not mix yet when i have to fill in this form when the side effects of the medication i take can make me feel shaky, confused, forgetful, not able to stay on a task for longer than 10 minutes, unable to hold a pen as I have tiny cuts at the end of my fingers, feel tired ,I could go on and on as I’m sure you can relate too THEN they won’t accept a typed assessment form and then I need to photocopy it before I’ve sent it ( I’m shut indoors for 12 weeks). They don’t make it easy do they😡
I’m not on Facebook ( yep strange I know) but if you think it would be helpful then I’m going to give it a go.
I bet you’re even more tired now after reading my novel lol
Please get your rest and thank you once again for your reply xx
Hi, I was in the same position as you I just couldn’t, can’t fill in forms, well they take me an awful long time and I hate asking for help. My PIP form took me over a month to fill in, as I cannot write for long, due to the shakes and my concentration and brain fog is dreadful since having this. My advice is to ring them and tell them your issue and I would say that with the current crisis they would allow you more time. My advice for filling in the form is not to be brave, but think of how you feel when having your worst day, you do not get rewarded for saying what you can do! Also think how does it affect you when you do something, so I really struggle with neuropathy in my feet, legs and hands - hence why struggle to write, so if I do extra then I suffer terribly with pain, burning and twitching. So do think of all the bad things this disease has impacted your life.
Good luck with it, it’s a dreadful process and do not be lead in by the assessor if they come to give you a face to face, I’m they are there to prove you do not need PIP! Yea it’s a horrible system as if we didn’t have enough to deal with! And should they discount your claim, ask for the assessors report because you can guarantee they’ve put something down that you can do! I don’t know how they do the job.
Thank you for your advise. The old me would never have reached out for help so I’m taking this positively and I feel so empowered by the process. I’ve learnt something new about myself. It’s ok to feel vulnerable. I’m liking this new part of me.
Please take care of yourself and thank you again for getting in touch xx
I totally get that, not wanting help or feeling vulnerable. I hate it and still struggle with it, often to my detriment. When you’ve gone from rushing around, being a working mum and studying a masters to been totally floored is not easy to cope with, which is why the PIP process is so horrible, they treat you as though you are trying to cheat the system - it’s insulting and upsetting and what is already a deeply challenging time.
Do not let them stop you from claiming, they will make it difficult just push back at them. Best wishes.
It’s been a difficult day for me tbh. On top form one minute, full of positivity to totally confused, not able to retain information the next. I just kept going around in circles because one part of my brain was the old Rachel, organised and logical to this new version of Rachel , totally confused and a complete mess 😞
I’m finding it all overwhelming tbh. I was only diagnosed at the end of last year and it’s been hell. I’m having my second course IV Infusion ( Cyclophosphamide) on Wednesday.
I’m a single parent and a career for my daughter so I’ve always put her first
I wish you all the best. I made the mistake of not taking copies of mine and then could not remember on assessment day. So, take pics of it . I really wish you well.
I know how the meds can bring you down but always remember there is light at the end of the tunnel.
I managed to receive enhanced PIP because of my mobility issue.
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