Hi all. I’m wondering whether anyone on here has been successful in applying for PIP due to the problems caused by Systemic sclerosis and if so what points/ areas it was awarded on.
Unfortunately since my diagnosis last year I’m increasingly struggling. The main thing is my job as I need to be able to type fast and accurately (I’m a medical professional and its pressurised). My hands ache, swell and seem less nimble and my typing is now full of errors. Work have offered to get me special dictation software which I’m grateful for. The other thing is the fatigue- I’ve had to reduce my working hours and concentrating. Is really hard. I need to work full time but am incapable of doing so. I have other health issues such as Generalized anxiety disorder (longstanding and at times severe) plus a badly damaged disc in my neck which greatly restricts any sort of lifting or general physical activity. I am unable to open the sash windows at home for example as the pressure aggravates my disc and I then get months of pain-and neuropathy in my arms.
If I could access PIP it would alleviate some of the financial pressure and also allow me to buy in some help.
I have a lot of issues and restrictions in my life but I am stoic and tend to force myself to do a lot of things I shouldn’t and have been told that would act against me for a PIP application.
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I tried and was told I scored zero for the impacts it has on me!! They specifically don’t look at how it affects your ability to work and earn. It seems to me that unless you need someone to wipe your bottom and put on your clothes every single day, forget it. And if you can pull off the film on an ultraprocessed ready meal and pop it in the microwave, you’re fine! Despite the fact we know how bad such food is for people with gastrointestinal issues and inflammation lined auto immune diseases.
I hope someone else here had a better experience and can offer more encouragement …I just think the parameter they use are so narrow, you have to have already lost all independence and it’s really about money to pay for someone to do things for you.
I really wish SRUK would go all out on a winter fuel payment eligibility campaign. That’s something crucial to most sufferers.
Sounds as if a lot of your problems are work related & this is not the appropriate funding. Why not try & get a work related allowance, & find a way to stop work. You, I guess, can dress yourself, & feed yourself, & get yourself to work, so PIP isn’t really appropriate, I don’t think. As Lady Trundle says so well! Also, if you can walk unaided, PIP isn’t really the right allowance. But there are allowances if you are unable to work, I think? I took early retirement so I don’t know, sorry.
I receive pip, lower rate for both mobility and care. The mobility issue is due to another condition i have with my knee but the care element is because of systemic sclerosis. I was a special needs teacher and received pip for a few years whilst i was working. I have since retired from my job on medical grounds as i found i just couldnt carry on with it any more and still get pip. Its worth applying for, as you may get it
Have you thought about contribution based ESA, which isn’t means tested and as long as you have paid National Insurance for the previous 2 years you can apply.
I believe they almost automatically reject most claims but I have it on good authority that it should be appealed as a different panel considers appeals. I was advised that I am eligible with systemic scleroderma but I was too drained to appeal
I have PIP at the full care amount and the lower rate mobility. I received it before the formal systemic sclerosis diagnosis. It seems it’s not so much the diagnosis as the effects it has on you. In your case, GAD and other physical problems apply too.
Go through the application form and think of your worst day then consider how you manage various activities and consider the points you might receive. It’d be helpful if you could go through this with someone from CAB or ( what I did) a benefits advisor from your council.
Last time I applied was a nightmare, I must admit. My assessor was downright dishonest in her report. I went all the way to a Tribunal which was very stressful but I was determined not to be treated as a scammer! The tribunal instantly reversed DWPs decision.
It can be done, and it’s worth it for getting extra help you need, but it isn’t easy x
Contact Citizens Advice Bureau CAB and ask to speak to someone who specialises in PIP. They will explain how it works relative to the issues you have .... don't give up with the right guidance I am sure CAB will point you in the right direction.
Yes, I get PIP, higher rate for daily living and lower rate for mobility. When I first applied 5 Years ago I was given zero points, I put in an appeal and was then awarded the higher rate for daily living. I also have problems with my neck and severe Raynauds. PIP means that I have been able to reduce my hours in work. Things are becoming more and more difficult and work is putting pressure on me to finish, but I am determined to carry on as long as I can.
Before Scleroderma symptoms started I was already on DLA for other serious health conditions, in 2019 I was transferred onto PIP which meant I had to reapply and attend an assessment. Try not to be too emotional when filling in the forms, they want hard facts, let them know succinctly how your condition affects you daily and why you cannot do everyday tasks that non disabled or healthy people can do. At the interview obviously be honest but also be aware that your every movement is being watched and judged. For instance I have difficulty using my hands, in particular picking things up, the fact that I managed even with difficulty to collect and hold some paperwork in my hands was used against me. Again picking up my handbag, shuffling a chair ( it was too heavy to move properly) just being able to put on my coat was all used against me when I received the report from DWP. I was outraged that I had been perceived in this way because illness or not we all have to carry on with life as best we can. I did appeal and won my case without having to go to a Tribunal, I told them that I didn’t feel that the person who interviewed me was medically competent to judge me!
After going through the process I discovered a web site called Turn 2Us, this gave valuable info into what the DWP are looking for and how to answer the questions from their perspective. I wish I had discovered this before applying, also CAB etc., as others have said.
Please don’t be put off from applying, you are entitled to, the other thing is to provide as much medical evidence from your GP, Consultant etc., to include in your application. If you are turned down, appeal immediately, don’t give up. Good luck.
Both me and my 16 year old daughter get PIP. I recommend the Benefits and Work guides as they explain how to think outside the box and fill in the application form to fit the criteria. They also guide you through the assessment and appeal stage if needed. It is a small fee, but well worth it. It also helps if you can obtain good supporting evidence from your consultants (including clinic letters), friends and family or even a diary. Most assessments are now by telephone, so they cannot watch your every move or perform a medical. It will take a long time to complete the forms, but it is well worth it. In the past I have even been successful at the appeal stage. It shouldn’t matter about the fact that you work as it is about your ability to do everyday tasks and your mobility. I suggest that you go for it, because if successful it can really help with the costs involved of having a disability. Good luck.
I get it same as Jacko37 ie higher rate daily living and standard for mobility. I could have appealed again for higher mobility as now have worse days needing wheelchair and was only one point off on reappraisal. But the stress of thinking PIP made me so unwell and I hate focussing for lengthy periods on all the things I can’t do now. So I agreed over phone to this improved rate a few years ago after years of applying, being turned down and battling on but being shafted by assessors.
The higher rate for daily living was awarded on appeal due to having to manage serious toileting issues and being on a liquid nutritional supplement diet caused by severe scleroderma gut. I did get help with application from local carer’s association officer who also registered my husband as my unpaid carer. This really helped and she told us that she’d never come across such a strong case - I had supporting letters from my GP, local clinical psychology team, physio and dietician plus cc of clinical letters from my rheumatologist, dermatologist, colorectal consultant and my neurologist.
Re stoical - everyone here living with systemic sclerosis is stoical and none of us like to admit or dwell on stuff we increasingly struggle with day-to-day. But going through with PIP application and often having to appeal or review isn’t for the faint- hearted so you will probably need all the stoicism you can muster to undergo this process! Some are lucky to get it first time with a good assessor - but most aren’t and finding the resilience required for perseverance with appeals is really tough. Get the forms and get help and support from CAB or other organisations to get the wording and hidden descriptors right. Good luck!
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