0 point for PIP: I recently had my PIP assessment... - LUPUS UK

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0 point for PIP

Jessie_2014
Jessie_2014

I recently had my PIP assessment. I always knew it would be difficult for me to get enough points as I do not have any mobility issues, however I was naive enough to think my extreme fatigue would count for something.

I absolutely cannot believe that I scored 0 points overall! I am so angry and feel like this completely undermines how challenging my life is on a daily basis. I just feel completely undermined and like I don't matter.

Every singe day is a battle and I guess this is no different. I will not be appealing as I don't feel it's worth the hassle and can't see me being successful given that I am so far away from the threshold.

I'm so annoyed and fed up. Hope you're all having a better day!

9 Replies
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Ugghy. Words fail me, Jessie_2014. You are far from the only one who's been betrayed by this process. It's a system that is designed to beat the fight out us; I hope you don't let it get to you x

Thanks for your support whisperit. The whole thing just seems so unfair. I'm only in my 20s and have had to reduce my hours at work. I worry that as the years go on I will struggle more and more and there will be no financial help available :(. Anyway I'm determined to not let it get me down. I know I struggle and should be entitled to help. I won't let a piece of paper tell me otherwise! X

Good for you. In a decent society, we should all contribute to support people with disabilities who need extra help to get by because of those disabilities. Otherwise, we will have a society where everyone with a disability ends up poor. Not my idea of a good place. Anyway, I should be hearing the outcome of my PIP assessment in a week or two. I have low expectations! x

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Oh Jessie I’ve been there - got 4 points for bathing and toileting issues which ironically have more or less resolved with proper treatment now. But the fatigue, which is my very most debilitating symptom, counted for nothing apparently and is only getting worse.

I took it to appeal tribunal but was turned down there too with no extra points. Despite acknowledging my autoimmune diseases I was made to feel like a liar and a fraud and still haven’t fully recovered from the feelings of rage and humiliation this caused.

Maybe I’ll recover enough one day to try again as I have evidence of some common but severe wear and tear problems now. But even if I reapply and get it I bet it won’t be for the dreadful fatigue which is way, way worse to bear than the wear and tear in my spine. X

I’ve applied twice for pip and both times I had to appeal and I’ve won!

I won my 2nd appeal in June this year and have been awarded pip for 5 years. It’s worth the appeal as the people on the panel actually know about your condition.

Over on my Facebook ankylosing spondylitis group (there isn't a group on HU) this has been a hot topic. People are either scoring zero when applying first time or having their benefits taken away, all because they are too active. However, being active is a crucial part of our treatment. It has been shown in many studies that if you can keep up your activity level you can at the very least delay fusion of your spine. So, AS sufferers are being punished by this system for following their treatment plans... Fatigue is a huge problem for many with AS - I read recently that when fatigue levels are high it often corresponds with very active inflammation. I've not tried to claim (I'm sure I'd get zero points too) so instead we struggle on my husband's wage, we're trying to sell our house as we can't really afford it now (but market is so slow, we've been for sale for almost a year and had 2 viewings) and we shop at the discount shops and don't turn the heating on. Meanwhile (and I've moaned about this before!) My sister, who has no diagnosis despite numerous tests with GP and rheumatology gets loads of benefits. She went to the US on holiday last year and is currently in the Canaries - last month her benefits were not paid and she didn't notice as she had a "buffer zone"! I can't help but feel that if you are willing and able to play the system then it's easy to get benefits. If you have a disease like AS or lupus, both of which flare, this system does not work.

Hello, My first pip application was turned down with 0 points and apparently i was perfectly fit to work, this was seven weeks after having a stroke and being able to see properly, walk in a straight line, and being totally exhausted all the time.

i am told that almost all applications are turned down on first attempt but a lot of appeals are successful, dont be disheartened by it but think about it for a day or two and you may find you do want to appeal, you have nothing to lose by appealing, i think its just the authorities way of saving money.

It is frustrating but dont let them get you down,

Hope you start feeling better soon.

After being on full care element and low mobility element of the DLA and then PIP, my most recent application and mandatory assessment has resulted in a decrease in the care element. This is largely thanks to the assessor who twisted an answer I gave to one question as an answer to something different, then added a couple of shocking porkies.

The civil servant in the original summing up added a few of her own reflections, which I challenged and were strangely missing at the mandatory stage.

I'm going to Tribunal with the aid of the Welfare Rights Officer at my local council.

I've been thinking about how much any of the process relates to, or asks about, fatigue. Nowhere ( says my foggy memory). I suppose it's important to always answer on the "worst day" basis. If you are too fatigued to get out of bed, eat, get dressed or washed apart from necessities of drinking something and not wetting the bed, then I'd say that should get more than zero points.

Keep fighting because the rotters are making it harder and you are in the hands of which assessor you get and which side of the bed they got out of that morning.

Don't give in x

I'm so sorry, it's an immoral disgusting system. You must appeal though I know it's exhausting. Wishing you all the best and sending hugs xx

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