Looking for help - new to all this: Wondered if... - Headway


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Looking for help - new to all this

pixiec profile image

Wondered if anyone could help.

My boyfriend had a brain injury due to a car crash in the 1990s. I am trying to help him as he seems to have been abandoned by most authorities who would have been involved.

The main thing we are working on at the moment is his PIP award so I am trying to help him to gather evidence against all the "criteria" and although his physical difficulties are easy to prove (physical exam etc) finding proof of his mental difficulties is difficult - he appears not to have any on first impressions but that is mainly due to his stubbornness!!

He went to headway in the past (before I knew him) would they have records of his attendance etc? (I assume so)

Any help or advice from anyone would be so gratefully received :)

24 Replies

To evidence his brain injury difficulties you would need a neuropsychologist to assess his cognitive abilities and that would show his long term difficulties and which areas of the brains ability has been damaged. He would need to ask his GP about making a referral if it hasn’t already been done after he sustained his brain injury. Did he attend a rehabilitation service as an inpatient? Headway have some day attendance rehabilitation services in some areas but also support groups. I am not sure if attending a Headway support group would be sufficient evidence for PIP.

Thanks, He did have rehabilitation after his accident but can't remember if he had a neuropsychologist assessment then, I think that would probably be on his medical notes? We are going to see if he can find out.

He does not seem to have had any long-term consultancy following his head injury either, I find this a bit odd as I am thinking that there could be long-term repercussions even if to all intents and purposes he seems to be ok?

Post brain injury it is a postcode lottery as to whether you access anything, and if you do, often it is not a lot and if you are still walking and talking then it’s very short term follow up or intervention.

Okay, wasn't sure but thanks. Will have to see what we can get

As it was 1990s that he sustained his TBI it is possible that if this is his first DLA/PIP claim that the info, if you haven’t got any other more recent medical reports, would be too old. Or has he been receiving DLA and transferring to PIP? Ask his GP to refer to a neuro psychologist for cognitive testing.

He's had DLA in the past and some level of PIP but due to developments with physical difficulties he is being reassessed and I'm trying to help him get the best assessment he can.

Looks like the neuro psychologist is probably the best bet at the moment

Hi there, well done for sticking by your bf and helping in this way im sure he really appreciates it and its a tough thing for a loved one or carer to do. In my recent experience a neuro phycologist is the only one who could test and conduct reviews on your bf mental state or condition following a brain injury. Regarding head way, you could call them and ask about records, they have a number on thier website.


in reply to RockinRic

Maybe he should try strangling the assessor, as that's what I'm thinking of doing and wonder if this is proof, how can I provide proof of a brain injury, all I'm taking is my discharge papers from hospital.

pixiec profile image
pixiec in reply to

I feel your pain, how on earth can you prove what you can't do? and as I said to him, it doesn't do you any good focusing on the things you find hard if you are trying to improve yourself!!

pixiec profile image
pixiec in reply to RockinRic

Thanks, we are trying to work out what proof we can get together, I guess if necessary he could request an assessment from his dr?

I have a been left with a brain injury after 11 years now, also in a car accident.

I find this PIP and employment and support allowance is a night mare to get every two years when I return to further appointments and getting validated again.

I refer my self to the outpatients brain injury department and they are always good enough to write a letter for me stating the issues I have with every day life.

It gets tricky as I have had lots of appointments over the years with specialist but there finish the courses and treatments and then get discharged to do my own thing, then PIP always ask if I have any new letters from doctors lol

I try and explain to them that my head injury isn’t going to get better and it was the same as two years ago.

With persistence I get the advanced rate of care for PIP and that gives me the high rate for employment and support allowance automatically.

I dread another years time when I have to go through all the same shit again.

Good luck with it.

pixiec profile image
pixiec in reply to HavingAlook1

I am beginning to see just how difficult it all is. I'm sorry you have such difficulties yourself.

Is it fairly easy to self-refer to the outpatients for an assessment?


HavingAlook1 profile image
HavingAlook1 in reply to pixiec

Yes very easy to self refer when you have had a brain injury as there is no point in seeing the normal doctors as they havnt a clue anyway.

The occupational therapists are great and understand what we go through.

pixiec profile image
pixiec in reply to HavingAlook1

Okay thanks, shall have to see what he can do with regards to seeing someone

Headway may have his paperwork with some evidence but to me their service is a load of shite. All talk no action

pixiec profile image
pixiec in reply to

Ok, thanks, we'll look into it. Doesn't seem that many people put a huge amount of stock in them?

My OH went to the interview and being a natural optimist ,his answers were just what they wanted to hear. Anything I said was dismissed. He has asphasia/ number problems

but the interviewer asked him additions and he answered as if his life depended on it and took ages getting the right answer, (not like in a normal everyday situation)- hence no PIP anymore! know its a waste of time appealing as my other half treats it like an exam he has to pass at all costs!!! BE WARY !!!

pixiec profile image
pixiec in reply to pollyanne

Thanks, I know my bf can be very stubborn and will persevere until he CAN do something

Yes my husband did this as he can add up and was proud to prove it. But I made it clear on the carers part of the application that while he could know the right change for a loaf of bread he had no concept of bills that need prioritizing or indeed how to go about paying them.

She checked this out by asking how he would pay the electric bill. He couldn't answer her. Luckily he got his PIP

pixiec profile image
pixiec in reply to Lynd

Sounds like you had a good assessor, I guess it depends if they are there to help or not?

Lynd profile image
Lynd in reply to pixiec

I think it's a lottery and a horrible system.

I think dragging people into interview who have brain injury is a disgusting thing to do.

As I sat next to my husband I felt humiliated on his behalf.

If a person has brain injury I think they should be paid a standard allowance and get rid of this act of expecting them to perform x

Totally right -In our case the assessor was a nurse in his late 20's who had obviously had

many dealing with TBI and brain injuries. I wonder if they get a bonus??

Write a diary every day fir a week showing exactly what care he needs and how his brain injury affects him. I did this and it really showed how much my brain injury impacts me throughout the day, i broke it down into secotions covering communication, behaviour, dressing, washing, nutrition, meeting people, household stuff/work etc. I contacted my gp and aksed to wrote a letter to inclu but i gave him a list of how my brain injury affects me (i am also autistic but as i wasnt diagnosed till adulthood i mask my autism well so its not so obvious to most professionals. My brain injury has gone the same way and because of this my medical professionals assume i manage very well when infact i need 24/7 care and support with every single thing i do from my wife. I managed to get some good letters from other professionals by giving them the same list. I also included a personal statement from myself writing hiw my brain injury has changed my life, how i try to hide my difficulties and how anxious and depressed i get. My wife wrote a carers statement where she listed every single thing she does for in a day and why.

The citizens advice website has a really good breakdown of every question and how to approach it. If you look for pip on their website you’ll find it. Also have a look at the national autistic society website. Although its a different condition, they have a great breakdown of the pip questions from an autism point of view but its very similar approach to take with brain injry too ie it explains how to answer question for preparing a meal but more about things like prompting to remind you what to do, staying focussed etc. Its tricky to find on the website but if you find the pip section theres a link in the middle of the paragrahs with sinething like “look here for help on how to fill it in” and only the “fill it in” or whatever the wording is, is a clickable link.

Remembr to keep referring to prompting - someone telling you what to do, assistance -physical help a person gives, and supervision - someone needing to be with you to make sure you are safe.

Phine them and ask for more time if you need it. They will give you two weeks extra time. Dont forget to photocopy the entire form before you fill it in incase they lose it, and send it special delivery/signed for so they cant use the “we didnt get your form i time” excuse.

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