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Autoimmune disease

Pip Dismay

2 replies

Pipdismay · 18/07/2019 19:50

Hello, I am hoping for some advice please.

For the second time, I have received zero points for PIP. I honestly cannot believe it as I am in constant widespread pain every day and am in agony frequently.

I have had anxiety and depression for about 25 years on and off. About 5 years ago I was diagnosed with rheumatoid arthritis and I am affected from my jaw to my toes. I have had various medications for this over the years and am currently on the highest level of methotrexate alongside a high dose of sulfasalazine. I take folic acid 6 days per week.

The RA is not fully controlled and I regularly have flares - these are treated my steroid injections or steroid tablets and co-codomol. I avoid taking Naproxen and ibuprofen following a gastric ulcer. I may be moving shortly into biologicals.

I have hidradenitis supprativa - this is also very painful and causes me embarrassment.

I also have Reynauds although this is worse when it’s cold/in winter.

I may also have fibromyalgia - the rheumatologist mentioned this at the last appointment as my pain is affecting other areas/following different patterns.

I also have anaphylaxis - my allergies have a substantial impact on my day to day life.

My depression and anxiety had escalated due to the pain I’m in. I am under the care of a psychiatrist. I take the max dose of Sertraline alongside another anti depressant as I’m not improving.

Im still working full time and I think this is heavily going against me. I have explained the daily struggles I have and the extreme fatigue I suffer. I basically get up - when I can eventually get out of bed (usually with help) go to work and sleep. I have no social life as I cannot face it and am also too worn out to do anything.

I explained every aspect of what I struggle with on a daily basis, inc dressing, preparing food etc. I explained that on a good day I still struggle with most areas and on a bad day I can’t do much at all. I went into detail giving examples of everything after getting zero points first time. I literally went through each point with the assessor after going through the NRAS guidance in detail.

I have obtained a copy of the report and it does not reflect what I said or even my mood. I cried during the assessment yet apparently I was in a good mood and sounded as fit as a fiddle.

I’ve been having physiotherapy and am about to try acupuncture. I have been referred for hydrotherapy. The assessor said I have no restricted movements and this is simply untrue.

How do I prepare for mandatory reconsideration? Will my consultants and gp prepare reports if I ask them or will they only do this if the DWP requests them? They haven’t written to them for any further evidence just relied on my hospital letters.

How long does MR take?

I am only just about managing to stay employed and that’s because my boss is supportive. I have a reduced workload and flexible hours. I use flexi and annual leave to mask sick leave and make up time over weekends. I need to reduce my hours but was hoping to find a treatment that worked well enough for me to stay full time.

I apologise for this extremely long post but would be most grateful for any advice at all.

OP posts:
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Cherryberrypie · 26/07/2019 00:53

Hello pip,
I could have written your post myself, it’s just awful.

I was 5 yrs into RA when I was called in for a pip assessment. Like you, I was rejected. I had been working full time, but my constant flares meant I had to reduce my hours drastically.

I appealed my rejection of pip immediately and a couple of weeks later I received a phone call from the appeals board.

I told her that my appeal was based on the fact that I was genuinely trying to stay in employment, my job forced me to walk about, keep mobile etc, but that non working days were spent mainly in bed trying to recover from the previous days work.

I had no energy for cleaning, cooking etc and need help with these things. I also told her that without pip, I could not stay in my job as I did not earn enough to keep me afloat and my reduced hours ment I couldn’t apply for tax credits. (This was 4 yrs ago, not sure if they still do TC now as I now live abroad)

I told her that without pip, I would just give up, leave my job, claims ss for everything including council tax and no doubt see a worsening of my symptoms because I would no longer be moving about as much.

I told her pip was my key to staying in work and trying to support myself, without it I would become fully reliant upon the state as I physically could not work any more hours.

Anyway, the assessor thanked me for my time and said I would hear shortly. A week later I received pip at the lowest rate but backdated to my first application which was three months prior.

Can you negotiate fewer hours with your employer for say 6 months while you appeal the decision, it may help your case and if you are eventually awarded pip it may make up the difference in lost wages to allow you to stay part time and maybe get some enjoyment out of life instead of constant pain and work.

As I said, I no longer live in the UK but I still occasionally read these posts regarding denial of pip to genuinely sick people and it makes my blood boil.

Good luck, I hope you get some help as you sound like you deserve it.

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Jux · 29/07/2019 22:04

Go to CAB.

DH and I wrote the initial application form together, which was OK, but after the assessment my MS nurse said that I should see CAB anyway and show my form and the assessment to them.

CAB were fabulous! The woman went through every single question and asked me apposite questions and then appealed the decision. She wrote the entire appeal for me. She won! I had had an award already but the ms nurse and the CAB woman both thought that the assessment was unfair and inaccurate in a number of places. My points were increased, especially on the mobility assessment.

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