update from local MP

[Teazymaid]

I have heard back from my local MP and my concerns on neuro rehab and PIP has been passed on to department of health and social care .. they have replied say that this has been noted and is being looked into. ( that’s the short version ) but please anyone who is not getting what help is needed from the NHS and PIP contact your local PM as the more people speak out the better chance we have of much needed help / rehab / understanding what it is actually like to have a brain injury .. Sue

[WonderingWanda]

I hope further good comes of this. Well done for pushing on.

I was fortunate with my PPP, the practice website that tells you how the scores are calculated helps understand what information they need but the ex nurse who did my personal assessment on the phone was the one who helped the most. She was actually asking questions to the travel section that I didn’t think I would get anything for asking leading questions that resulted in my getting the standard award.

Others going through it should know that some of the assesssors are really nice and they’re not deliberately trying to block us!

Good luck with your efforts and I hope you get results

[TreesMTBI in reply to WonderingWanda]

Yes I have to say for both my assessments for work capability and for PIP, I had lovely assessors that really did seem to empathise and to make sure they got all the information they needed for the decision makers. I suppose it’s worth noting they ask all the extra questions not to catch you out but to make sure you are getting all the opportunities to give as much as information as possible - and worded in a way that gives them something they can work with, ie specific answers like ‘every day, I can’t do X, or three weeks out of four I struggle with X’. They’re not mind readers so we need to be as clear as possible with them.

[Teazymaid in reply to TreesMTBI]

Unfortunately my assessment was verbal and with a shout term memory , not saying things accurately which I have no idea I’m doing .. was my problem and then when u asked for a reconsider of there initial assessment they used what I had said in the first place against me 🥴 I have been waiting for a tribunal for at least 7 months with lots of evidence form other people how difficult life is for me and how different I am from the old me .. it’s 12 months January that I had my last PIP payment and my health has deteriorated with my changing sight .. it’s the system that’s broken and not understanding head injuries ..

[Teazymaid in reply to TreesMTBI]

Pip was in the phone .. not good but ESA was in person and she had no problem understanding me as she could see me checking notes and struggling to find answers .. 🥴

[Teazymaid in reply to WonderingWanda]

Non of this would have been a problem if I hadn’t spoken to them .. even with my notes there and can’t always find or say the right things /.. the more important the conversation the worse I get .. it was doomed from the start 😢 and the old me has a lot of information on head injuries and filling in PIP forms but I just can’t say what I want to say at the speed of a conversation over the phone 🥴

[TreesMTBI]

Well done for pursuing this Sue. The provision really is woeful and I wish we could wave a magic wand and have us all be able to receive the treatment we need (and not just brain injury).

Have a good day

Tx

[Teazymaid]

I worked in a mental health team and was beyond gobsmacked how bad it was then before that I worked with a guy who had brain damage from a fall as a child from a balcony while on holiday with his school .. I don’t have the full details but can only guess there was compensation paid as he had amazing after care .. thought training courses I heard of another brain injury survivor who got a huge payout and with this had a beautiful house and support works ..

what I was very unaware of was the brain injury survivors who aren’t visibly disabled and have no way of getting compensation .. 🤔🥴🤔

This is me and I’m guessing lots of others on here are the same .

I never thought I could have lost all confidence in the NHS rehab and social funding that truly don’t have a clue .. even with all of my problems and brain damage is seen on a MRI I have had to fight for help and am still fighting and paying .. I hope others do tell there story to there MP as without this information we have no hope 🤔sue

[skydivesurvivor]

try headway a charity for TBI. Hope they can help you, a better new year to y both!!

[WonderingWanda]

I’m so sorry to hear this. I have to say that I had my partner with me at the conversation and that helped a lot as I would have missed lots of information if I had been on my own.

But you’re right about that being very poor as there should be consideration given to those who struggle with thought processes and communication !

[Nemo24]

Brilliant, I messaged my local MP last year after trying MP Chris Bryant. He was part of group looking into Acquired Brain Injury Strategy. Now moved on with government changes & I feel it's gone quiet.

[Teazymaid]

yes we have all got to keep speaking out about the NHS lack of rehab

[Painting-girl]

Yes, really important to contact our MPs, and it's easier with email now as well. The important thing is that you email your own local MP, and that you always supply your full name, address and phone number so that they can identify you as their own constituent.

[Teazymaid]

yes that is exactly what I did and got a reply .. eventually if we all speak out they have to listen .. lots of us are dealing with what looks invisible to others but OMG !! This is life changing for us … Sue 🥴