PIP ER Both to Standard DL only with lifelong disabilities

Hi all,

I had my PIP review decision letter through today; I've gone from being awarded ER both for 5 years to being awarded STD Daily Living only for 3 years, despite falling and suffering a suspected broken toe in 2020. I couldn't get it checked and treated properly as hospital sent my carer (Mum) away due to covid restrictions, so it's made made my mobility worse as I'm in constant pain with walking. I guess it's MR time now though I really don't want to go through that circus act again - it's debasing for disabled people to have to go through this time and time again.

For the record, I was diagnosed with mild arrested hydrocephalus, spina bidida, ataxia, lordosis and mild hearing loss in 1995, GAD and depression were diagnosed in 1997 and I was diagnosed with CRPS (then RSD) in 2002. I have chronic pain and weakness in my right hand, knee and foot.

My anxiety was dismissed entirely as I don't have ongoing medical intervention and I'm not on any medication, despite the assessor during my phone appointment agreeing with me that medication doesn''t work for everyone. I explained to her that I've had CBT in the past and still use the tools to manage my anxiety, along with support from my husband and Mum. I rarely go out anywhere as though I can plan a journey, I suffer with extreme amaxophobia and social anxiety, so though I can plan it, I can't take the journey and have letters from my mother - my main driver - supporting this. I get very anxious in moving vehicles to the point that I can become dangerous and require reassurance, even with drivers I know. I don't drive.

The DM said that I can engage with people unaided as I was able to talk to the assessor on the phone without prompting. The assessor didn't ask if I had anyone in the room with me, she also didn't ask how I was feeling. I "mask" (I didn't know that's what it was called until recently!) so although I can engage in polite, albeit often terse conversation with unfamiliar people, it's extremely uncomfortable for me and I hate social situations outside of my (very small) circle. I don't go clubbing or have a circle of friends away from my husband.

Lastly, the DM agreed that I need aids to prepare food but said that as I can pop pills from a strip, I don't need to use adapted cutlery. I'm pulling a bit of an Uno Reverse here because until today, I didn't know pill poppers existed - I do struggle with this task and I have now ordered a pill popper to help me. That was the other part: the DM held it against me that I've bought my aids, they weren't prescribed to me. A lot of the aids I have I've bought through recommendation of an OT, or they are ones I've bought to replace the lost/damaged ones that were given to me by the OT at the time. I still need them, but I need them to be functioning too!

Also not sure what we're supposed to spend our PIP money on if we can't spend it on food shopping, personal luxuries or gadgets to help us around the home!

I've contacted the law centre that helped me last time to see if they can help again. I don't want ER/ER back but I think an award of ER/STD would be easily to qualify for, and shouldn't need to be fought for again in court.

Any thoughts/wishes/advice would be welcome, of course. Thanks all

NB. I'm in Bristol, if it matters.

Hi Gary,

Thankyou ever so much for your thought-out and helpful advice. I've already been floating around the forum and found a few bits and pieces that are definitely going to help my argument, I've also requested a copy of the PA4, so hopefully I can get the ball rolling soon enough. Have you any idea how long that normally takes once the request is made?

Thankyou for your advice on wording as well, I understand it's easy to feel attacked by these assessors and I know I did at first. I have sent previous letters from my carers that say I can't do certain activities (socialising, following a journey) without their support, because of my anxiety, so I will definitely reference them. I know I have also sent a diary in the past which demonstrates my inability to travel unsupported, so I I may refer to that, along with a week-long updated version to show that nothing has changed overall.

Thankyou again for your help

Hi BIS,

Thankyou for your help. I rang up yesterday to check that my request for the PA4 had been logged, it hadn't, so I asked the lady again to log it and she said it would take 5-10 working days. Sooner is reassuring though, in a way: I was encouraged by how quickly I went from telephone appointment to review written up to decision so hopefully with my MR and some additional evidence, I can get the outcome I, and my carers, think I should receive.

Thankyou again for your help