I had a blackout in the street some 5 years ago and hit my head very hard.
I am still receiving medical treatment and have another operation next month.
After a recent neurologist appointment it was suggested to me that I might be eligible for PIP (personal independence payment)
I wonder if anyone else on here has been through this process.
I have filled out the online forms (very difficult) and am now awaiting an assessment date.
From what I read both on the Headway site and elsewhere, the PIP assessment process is designed to assess physical (limb) or sight disabilities more than to assess brain injury, with assessors who may not understand the issues we face.
If you have been through this and have any advice I would be extremely grateful.
If I go to an assessment, I will be able to get there alone, I will be able to walk, I will be able to communicate and I will be able to explain my conditions., But, like many of us I imagine, I will need to rehearse my journey ahead of the event, be mentally drained within the first half hour of the meeting, be under some significant mental strain and, by the time I leave, I will likely have a headache and nausea and will be useless for the rest of the day.
I fear that they will not understand this.
Any thoughts?
All the best
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Usually_Fatigued
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I’m afraid I don’t think, from my own experience, the assessors understand the complications of brain injury. I know I have memory and cognitive issues but it was recorded that because I could talk about my injuries/situation there were no issues. Apparently I can plan and follow a route but I know that I don’t go anywhere new on my own
Although you’ve said you would be able to attend the assessment on your own, I would suggest that you take someone with you to make sure everything is understood and nothing is missed.
Thanks so much. I have also spoken to the helpline just now to explain that I will be recovering from an op (they may do it virtually), and have also requested that there is an assessor who understands the impact of brain injury. If you are willing to chat closer to my assessment date (I dont have a date yet) that would be very kind
Hi, you can go on the government website and get the assessment matrix which sets out the areas that are looked at with the scores. This might help you think about how to answer. It is difficult put into words how a brain injury impacts on we achieve physical aspects of life. I was lucky in having a DWP approved Dr's report from a Fit for Work Assessment to fall back on when P.I.P. assessment went against me. Request copies of the assessment, and be prepared to go to appeal. Good luck 🍀
Thank you so much, I will check out the Government website, Usefully I have a report from a clinical pyschologist and occupasional health doctor which I've included in the supporting evidence
You are correct about the assessment. My original one was carried by an orthopaedic consultant, who admitted he didn't have a clue about bi.
You say you will be fine getting there alone and conducting yourself all be it you will be fatigued and have headache. Well how do you plan getting home ?
Maybe being accompanied will be a good idea. They can also remind you if taking a break. Yes you can do this , it is allowed if you feel the need for a rest .
Let them know how the assessment is making you feel. Oh and remember you are expressing your worst day. Yep I failed to do this as my worse day leaves me bed bound.
Remember you are not on trial. They are assessing your needs. It is YOUR assessment so if you are not getting your points across tell them you are struggling.
Thank you this is helpful,, Sometimes I receive hosptial reviews in which I seem to have omitted some key information probaby due to feeling under pressure (or possibly it not being captured correctly). I will make some notes of what I must get across. I called yesterday and asked for virtual if possible (as I will be recovergin from an operation unless the assessment is way into the future - sent my hospital operation appointment letter) and asked for a break to be considered if required every 15 mins I also asked if it coudl be noted that it would be useful for the assessor ti have some expereince of the nature of brain injury, Very nice lady on the phone and was v empathetic and logged this all.
I helped a friend with this and her BI has resulted in multiple physical disabilities. She was awarded on the basis of the form alone. I know that there can be difficulties for people with mental illness explaining the impact of their condition especially ehere it may fluctuate and advicevthere is to describe your hardest days. Citizens Advice website and the local Age UK were very helpful too. Hope this helps.
Hi Dvorak, I’m so glad your friend got their PIP sorted. Can I just clarify here, if anyone misconstrues: if someone with BI doesn’t have any (obvious) physical disabilities, it doesn’t automatically mean that any other issues are to be classified as mental illness. Not sure if that’s what you meant Dvorak, but just wanted to check, as I have plenty of cognitive issues that aren’t visible but are not mental illness issues, I score low on the standard mental health tests 🙃
And I’ve the joy of explaining my non-visible cognitive issues in the PIP assessment ahead of me... 🙃
Sorry, I wasn't clear. I meant that, like mental illness, the impact of brain injury may fluctuate or be invisible. On the day you may seem unimpaired and it's important assessors know about the worst impact...
Thanks Dvorak, yes possibly the second hardest thing to convey, the frustrating fluctuation, with the first being all the invisible cognitive issues with things ‘normals’ take for granted, like initiating a task and actually finishing it, and planning or multitasking, or trying to comprehend on the spot the exact meaning or point of what someone is saying to you.
I’m afraid I don’t think the assessors really understand the impact of brain injury - my sister is awaiting an appeal against the DWP decision rejecting her PIP claim. Apparently because she could engage in a telephone assessment for just 20 minutes she could do the more complex activities listed in the form. The impact of fatigue seemed to be ignored.
Do take someone with you and even if it’s a telephone assessment try to have someone with you to listen in. Ask for a break in the assessment if necessary - if you have someone with you they can prompt you to do this. I think you can ask for the assessment to be recorded if it’s a phone assessment which might be useful if there is any dispute over what was said (but do check this) . We are still awaiting an appeal date and I was talking to our local citizens advice bureau earlier this week and they suggested that there was some anecdotal evidence that recently more claims were successful.
Yes this is my fear too but it's useful advice. I need to very very clear about what my issues are, without being so clear that I am over labouring the point probably. I called yesterday and asked for virtual if possible (as I will be recovering from an operation unless the assessment is way into the future - sent my hospital operation appointment letter) and asked for a break to be considered if required every 15 mins I also asked if it could be noted that it would be useful for the assessor ti have some experience of the nature of brain injury, Very nice lady on the phone and was v empathetic and logged this all.
Yes good idea re checking if telephone appointments are recorded
It won't be easy and expect to fight the system but don't give in to them. PIP isn't designed for brain injury, Its more for physical needs, but don't give in to them. My assessor said on my report said that I didn't look like I'd got a brain injury and doubted whether I had one because she couldn't see it. I looked 'normal' to her, whatever that means, I've had surgery and got scarring from ear to ear.
I'm sorry you went through that. Yes from completing the form it does seem skewed to physical and not neurological or mental health issues. And by its very nature, so difficult to explain
This:
"I didn't look like I'd got a brain injury"
is appalling - no professional should ever say something like that to you.
As others have said, make sure to relay your worst day under the worst circumstances and the worst outcomes. I do this-this happens- and this- and this- and then I am so bad that I am like this and can’t do ABC-XYZ. Have a load of real life examples to talk about.
I wish it were easier for you. I have to admit I don’t know how best to conduct yourself in the assessment if the fatigue etc hits down, as haven’t yet had my assessment. But I fear like you do, that the assessor won’t get it, as I look ‘normal’ and appear to be ‘fine’ and can have a conversation etc. BUT....we know differently don’t we...
I wish you an understanding assessor or an open-minded one, at least.
Thank you very much and I do wish you every success with your assessment. I think I may have to write a few sentences which describe my worst days.
For me because I have some memory problems and the days can start out good but can very quickly drain away to headaches and nausea, I can forget that these even happen to me, even thought it may have happened yesterday. Until they do,
A bit like when you are ill with a fever and when you first wake up you feel great because you've rested and you think brilliant, I am better, But as soon as you get out of bed...
Hi. I am currently going through this whole process and as of Tuesday of this week I have formally lodged my appeal with the courts and tribunal services. When I say I, I mean with the assistance of friends, several charities (including Headway and this week Possibility People) and by understanding my condition more with the help of my Neuropsychologist. I sit here after going through all the hoops, a large impact scare on my front right cranial lobe and reports from every medical practitioner I have seen all agreeing I have a long form TBI diagnosed as Post Concussion Syndrome....yet I scored zero points.
The above replies to your post include many of the conditions I suffer with and how I have had to learn how to manage myself on a daily basis just to be seen as acting normal. I seem to have fallen between the cracks and am fighting to be recognised as someone with an injury that effects not just what I aim to do, but also has to workout what I have just previously done.
My PIP claim started over six months ago (actual injury coming up to four years ago, with lock down hampering all and every chance of recieving the help I was screaming out for) and have been told that a definitive resolution will take further months to resolve. I hate all of this, I hate that the charities I am working with know the PIP system is so unfair with people such as us living with an invisible disability.
All that said and all the emotions you suffer, I will not give up, neither should you or all whom that find themselves in this purgatory. I need clarification to prove to the wider world there is a validity to my claim, not this vilification of disbelief that I am trying to claim for an unsupported condition. I am fed up with treading water, I want and need to move forward with my static life. Sites like this help, knowing that your thoughts are not just a cry in the wilderness and others are out there with a want and need to talk and share our experiences.
I wish you well moving forward and your continuing journey has many highlights and laughs. Just as a final note, it has taken me over two hours to form my response and a big thank you to spell check otherwise this whole rant would have been random letters on a page.
Thank you for taking so much time and care over your reply.
I find it remarkable that the PIP system is able to ignore medical evidence. Where does that come from? I wonder if it is it a they-know-better attitude or perhaps we don't know that only certain evidence is allowed to be taken account of by them.
As you say, so much energy is used up to be putting forward a normal outward vision.
I wish you the luck and strength you need to reach a positive resolution with these processes
This makes me so sad. I had a TBI a few years ago and my life changed. But apparently I look “normal” too. They don’t see the crying, swearing, not being able to talk or go out on your own in the same way as before. I forgot to put nausea and headaches on my review as they’re just part of everything!
Someone on another list said to look at the Benefits and Work web site as they have good guides an on line tests.
Always go with someone else, don’t try to be perfect ( I was an overachiever) and know they have a tick box and are advised to look out for inconsistencies.. say you have fatigue how come you didn’t stop the meeting. Say you can’t talk but you did.. blah blah and I swear all the f-big time never used to. Will they kick me out when a specialist told me singing and swearing are easier for your brain. Sorry going into “furrow” mind where I rant and rant. Good luck
I am a carer for my partner who had a Brain Haemorrhage 12 years ago. I cannot tell you how many forms I have filled out on his behalf, so I will list what I think might help you.
It is a bit difficult as I am not sure of your situation, and whether you have a carer or friend/partner, or family to help, but here goes:
The website and suggested action above is really helpful. It's worth joining.Here is the link. :benefitsandwork.co.uk/
There is a lot of information that is updated, and advice on each question etc., there is also a mockup of the points system that you can answer as a gauge to see how it works. It is very good, as there are constant changes to the forms and guidance. It helps to know what they are actually asking. Work on your worst days and it sometimes helps to start writing out things in drought form over a few days or weeks so that you do remember to write it all down.
Citizen's Advice might be very helpful also, and yes, take someone with you, and you are allowed someone else for video interviews also.
I would suggest that you gather as much of your medical records, letters from your GP and consultants, yourself and ask a friend/ family member or partner to write up a statement about you if you can. No matter what they say, they hardly ever do this on your behalf.
Always keep proof of postage or insist on some form of digital proof of submission, and send copies. Keep paper copies , or digital ones of the actual forms, in case you need them at a later date, so that you can remember exactly what you said. I always do paper submissions, but type it all and add extra pages if needed.
My assessor did not make any allowances for my memory issues. I asked for a transcript of my interview which really helped - you need to request this on the day and get them to prove that you will get it. The assessor said I was calm even though i wet myself, was visibly shaking and I have continued to feel traumatised by what I went through. They will not allow you to record the session which I would have found very helpful but a person with you and a transcript will help. I would strongly advise that you take someone with you if only to witness how it all goes. It is also useful to base your answers on your worse day.
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