Good news about PIP renewal - thank you

Sorry this is so long but wanted to give some details in case someone else is in the same position.

I am an unpaid carer for my friend who has bipolar disorder and has it very severely (eg. sections and compulsory treatment orders). In November 2020 he received a letter from the DWP that his PIP had been automatically renewed at the standard daily living rate for another year because of the pandemic. He was delighted to avoid an assessment but I was downhearted as I knew he was on too low an award. Previously when I had dragged him to a welfare rights adviser he had said he didn’t want to challenge the award in case he got nothing and because the whole thing stressed him out so much. However in November 2021 he was asked to do the PIP renewal form.

This was extremely challenging because unfortunately when my friend is unwell he loses his insight and doesn’t believe his diagnosis of bipolar disorder is true. He also doesn’t believe that any of the experiences he has had that the doctors call psychosis are due to illness. We had a telephone appointment with a welfare rights adviser and myself and the adviser partially filled in the form but I had to leave out the more severe difficulties he had faced because he was so agitated and losing touch with reality (psychotic). The adviser emailed what she had completed to me and I filled in the rest with your incredibly helpful guides. I felt so lost and overwhelmed at first but plodded on section by section and completed his form. This wasn’t new to me as I also have bipolar disorder (but somewhat managed with a lot of medication and a lot of lifestyle changes) and many years ago your guides helped me get an indefinite award of DLA (which I still have). It was so tough but I felt very reassured by how the guides spelled everything out and then went over every point step by step. I had a major piece of luck in that my friend decided he would go with my completed form: I had accidentally caught him in a lucid spell. He was terrified of the DWP and accepted my argument that the doctors are paid £90k a year so “let’s just go with what they are saying”. We sent it away and it did not arrive and we sent it again and then they had two copies. We heard nothing for months.

My friend’s adviser emailed him in June 2022 to see if he had heard anything. He said no and she offered to phone the DWP for him. I had been trying to persuade him to phone for months but he just couldn’t face it and got agitated even talking about it so I was delighted when the advisor phoned instead. She was told that he had been placed in a “holding queue for six months” and would have to have an assessment. We didn’t know what type of assessment but I slowly began to prepare him for that. I thought we wouldn’t hear anything again until the end of the year.

Then at the beginning of September, my friend’s phone rang with an unknown number. He thought it was a scam and only answered it to tell them to do something better with their life (he gets in a lot of arguments with scammers; not a great idea but I pick my battles). Luckily I was there and he was in a relatively decent frame of mind because it was a nurse from the DWP. Also lucky that he was already sitting down because he immediately began to panic. We established this wasn’t a telephone assessment (the guide had warned us that sometimes the notice letter gets ‘lost’) and was “just a few questions”. The nurse was very kind and patient and only really had two questions: how often was he manic and depressed and how often he left the house. I was pre-warned about the ‘fishing’ and looking for further information in the guide. My friend was severely agitated and unfortunately incoherent at times. He sobbed and then talked about painful things in his past and I tried my best to answer the questions. It horrifies me to think about what would have happened if I hadn’t been at his house. I don’t want to sound like a drama queen but it really could have been very serious indeed if my friend had felt the phone call had gone badly. I didn’t feel I did a very good job answering the DWP nurse’s questions but bits and pieces of the guide and his form came back to me. The nurse specifically said he would not need a face to face assessment or a telephone assessment (I asked her to repeat herself). The nurse said goodbye saying my friend should have a “good lie down and a nice cup of tea”. We both cried afterwards in the pure relief of no further assessments.

This week, my friend’s phone rang again with an 0800 number and it was a man claiming to be an assessor from PIP. We were both immediately suspicious that this was a scam but the assessor said my friend’s name and my name (I had written a letter and a diary and put it in with his form) and we figured it was best to go ahead with the security. My friend had been awarded enhanced daily living and enhanced mobility. We were shocked and my friend was disbelieving. He physically shook. The letter hadn’t arrived yet and the assessor read it out to us. The assessor said my friend had a large back payment dated to November 2021 when he first applied. It was being paid in two parts and unfortunately neither my friend or myself can remember why as we were too overwhelmed. The first, larger part of the back payment is in my friend’s bank account already (the first thing he did was pay his electricity bill a week early!). The award is for ten years (we are in Scotland so I don’t know how that works with transferring to the new system). The assessor could obviously tell we were shocked and went through the whole story twice. Unfortunately we still can’t remember why the back payment is split. It feels like it doesn’t matter because this is life changing for my friend. Seriously life changing. He has been wandering around in a dwam, but calm, and suddenly saying “I’ve got money coming in every month, I’ve got money in the bank, safe again”. Safety is the basis of mental health and all of a sudden he feels like he is on a steady footing and can start to hold his own again. Things have opened up for him and it is phenomenal to see. I am worried that such a large back payment might be a trigger for mania but he’s so far saying that he is “keeping hold” of the money as a safety net for the cost of living crisis.

So thank you so much for your guides. They have changed my friend’s life and mine too as I now have real hope that he can start to make progress in his recovery rather than stuck in the hell limbo of the last year. Thank you also for saving him from a face to face/telephone assessment. I don’t know how he would have survived that. I didn’t dare hope this outcome was possible and I feel so delighted that not only is it over but things will hopefully start to improve.

(In case it helps someone else, this is the medical evidence we sent with my friend’s form: letter of support from GP [this wasn’t that useful I think], Application to Extend and Vary a CTO or CO, Application for Short Term Detention Certificate, Mental Health (Care and Treatment) (Scotland) Act 2003 Full Findings and Reasons [this was the best one I think].)

Well done Swana and thank you so much for sharing with the B&W family. it's so nice to hear about positive outcomes for a change, and may I say your friend is fortunate to have a friend like you. Well done.