u/Independent_Act_8100

So I applied for PIP in 2022 due to having limb girdle muscular dystrophy, a progressive muscle wasting condition that effects the majority of my muscles in my body, (I also have cardiomyopathy (heart condition) and also anxiety and depression linked to my condition) so I struggle with the basics things a normal person would take for granted, cannot lift my hands above my head , cannot get into a regular bath as I cannot lift my legs up to get in, I can’t wash myself, I cannot cook for myself due to everything being heavy so I can’t even lift a plate and glasses for more than a few seconds , can’t get off the toilet or sit up from a laying down position without help, I can’t wash myself, I can barely walk at all and when I do I can only walk for a miniutes or two without my legs giving out due to my muscles not being able to hold my weight I am also 49kg and 5”3 so this isn’t due to being overweight before I get any hate comments.
Back in 2022 I didn’t struggle with these things and could just about do them myself apart from getting in the bath and walking more than 10 minutes
I applied in 2022 and received the lowest rate of daily living only. At the time I didn’t really understand benefits and didn’t know you can appeal if you didn’t agree with the decision as I was only young and didn’t know about higher and lower rates, I’m now 21 and my condition has progressed massively.
so last year June 2025 I asked for another pip form as my condition has worsened I filled it in and finally heard back on the 5th of may 2026 that I’d been awarded higher on both elements.
so almost a whole year later! Which is ridiculous as I know people who’ve applied for the first time recently and have had there decision within weeks. So I received my form and they decided my condition had worsened and awarded me enhanced on both. Which I agree with. But they will not give me back pay as they believe I haven’t shown evidence that my condition has worsened ?!? And have only given me back pay from when the assessor reviewed my form which is only 600£ backpay.
Which makes no sense cause if she didn’t believe it had worsened she would have gave me the same amount as before and not given me enhanced rate. I also gave in proof showing my struggles and letters from neurologists and physiotherapists . I phoned pip up and they are saying that they don’t believe there’s enough proof to give me the back pay from when I applied when there is clearly enough proof to show my condition has worsened to give me higher rate. It also states my struggles in my letters which were from way before I applied for a reconsideration or change of circumstance and if she had a look at my proof I sent in my previous claim in 2022 shed see the difference of my struggles in those letters. He is also trying to claim that they decided to send me the letter for a renewal instead of me asking for it which is not the case as I phoned up asking for it, and they definitely wouldn’t have sent me a letter a year before my claim ended as my brother who has the same condition has only just received his and his claim ends in a few months.
It’s very clear they are trying to cut costs and decided to sacrifice my one year backpay which should be close to 4000£ which I think is insane. It’s almost as if they hey decided to take a year to do my claim so that they could say at the end I wasnt eligible for back pay just so they didn’t have to pay me any money for a year. What should I do? The case worker which did my form says I just need to say I’m not happy with the outcome and to do it that way, eventually taking them to court, which is a long process and extremely stressful. Is this aloud? My condition is progressive and I won’t wake up one day and magically be cured. And how can she agree my condition has got worse and offer me full rate but say there isn’t enough evidence for back pay. It makes absolutely no sense.
If you have any questions or any advice please let me know. This is incredibly stressful and I am already robbed of a normal life from my condition but to be doing this to disabled people is wrong.