PIP assessment : My husband is 30 years post head... - Headway

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PIP assessment

Shushy
Shushy
22 Replies

My husband is 30 years post head injury. He has received DLA mid rate for about 25 years. He was told that this was a life long award due to the extent of his injuries. Now he’s being changed to PIP and has been told he needs to attend an assessment in Brighton. This is 25 miles from where we live and they expect him to arrive by 9am. Obviously this will not be possible and I will contact them to arrange a later time.

The main problem is that he is no longer treated specifically for his head injury, takes no medication for it and his original GP has long since retired. We moved and changed GP practices and his notes seem to have disappeared along the way so the only info our current GP has is from the insurance assessments we hold from the court case 22+ years ago. Copies of these were sent with the completed PIP baking form.

He is fortunate in that he presents quite well, at least on first impression but he cannot sustain this ‘air of normality ‘ for long and struggles with many of the things others find easy. He was unconscious for 7 weeks and his injury was severe but after 30 years he has found ways of coping.

My concern is that the PIP assessors have little training and understanding of serious head injuries and the long term effects and may decide he is not entitled to PIP. How can we be sure the assessor has the necessary knowledge and what are our rights regarding this?

If he loses the PIP it will have devastating consequences for him as it allows him to maintain his independence and dignity.

Any advice would be appreciated

22 Replies
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Lynd

Hello Shushy

Is there any chance the hospital that treated him could produce old notes?

I would take with you a letter from yourself to the DWP explaining the situation. Put every detail in writing.

The DWP may have details from his original claim.

My Husband presents very well initially so I fully understand your concerns.

They will ask can you cook a simple meal

My Husband can but will probably leave the cooker on so he needs supervision and prompting.

Can you wash and dress yourself. Answer yes but will only wash maybe hands and face and never think to change into clean clothes suitable for the weather.

Always tell the full story in relation to each question.

There must be notes somewhere so keep looking.

Best of luck x

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Shushy
Shushy
in reply to Lynd

Thanks little chance old old notes as Atkinson Morley is now part of St George’s and it’s too far away.

If they ask him to cook a simple meal I’ll be amazed if he could although the main issue there is a complete lack of sense of smell or timing.

He washes and dresses but needs reminding about shaving or putting on clean clothes l.

I’m going to ask what qualifications the assessor has and ask fir some reassurances but to be honest I’m not hopeful

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Lynd
Lynd
in reply to Shushy

No they won't ask him to actually cook.They will ask him if he can cook.

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Lynd
Lynd
in reply to Shushy

I wasn't hopeful at all and was pretty amazed when he was awarded it. It is a fact that many have to go on to tribunal and then get it. However we must not give up. We have to stand up for our rights otherwise there will be no welfare system in the country.

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Matt2584
Matt2584
in reply to Lynd

“Always tell the full story in relation to each question”

Well this is where the person who assessed me was a right spaz cos when he asked me a question, I might have gone out on a tangent and explained my problem further and he turned round and said “Yeah, I don’t really want to know that bit”!!

Very rude. And because of his abrupt attitude it shut me down for answering further questions in this way.

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Lynd
Lynd
in reply to Matt2584

Yes that was very rude.

I was determined to say what I wanted to say on my Husband behalf and just ploughed on regardless x

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Lynd

Also meant to say my Husband was awarded Pip and his assessor told me she had been to a talk from Headway and this had helped her in her assessments so don't give up hope. You will be allowed to speak during this interview so make sure you have your say x

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HavingAlook1

This is very similar to my case in some ways.

I had a moderate brain injury with a head on collision with a lorry which wasn’t my fault.

I was awarded permanent DLA but when I seen the new PIP being introduced I made a change of circumstances to apply for the PIP as I was currently seeing someone with some brain injury factors of stress etc from my head injury and thought it would be the ideal time to see them while I had the doctors on my side.

I got the advanced rate of care but nothing for mobility but was great for me at the time as had an increase in money.

But I do worry now as it was for three years only and have to return in another year and a half and I don’t have any medication and if you don’t take medication they think your fine again.

I would certainly ask the hospital to find some notes or at least go to your doctors and ask them to write a letter saying you have a brain injury and that you cannot return to work.

But remember as mentioned above, when asking questions about can you cook, yes but microwave meals or only when your not tired etc.

Make sure the answers are yes but depends on the day due to tired ness etc so it gives a 50/50 depending on time.

Like my self, I don’t like crowded places or strange places and spend most of my time in the country side.

You have to be very detailed

Don’t go to the appointment smart and clean shaven if I was you as all these things they make notes of.

The assessors haven’t a clue about brain injury and like you I am ok in small doses.

Wish you all the best.

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Matt2584

As you say that your husband presents well then I think that the outcome of his PIP assessment might not be such a good one.

That is my thoughts though, I could be wrong.

See, I like to think I present pretty well in my head but for others to view me from the outside, they can see that something isn’t right about me. And for people to see me walk, I obviously have problems.

In the results, the assessor put down that he saw me walk.

Correction, the assessor did see me on my feet. I took a few paces from our downstairs toilet to my seat. This was not what I call WALKING. So therefore the assessor was blatantly lying.

But my benefits were cut. Not completely but I was getting less than with DLA.

We did a mandatory reconsideration and we used the help of an online website called Advice Now advicenow.org.uk/categories

I never even saw what this website was about, my mum just happened to find it.

All she did was type in the information about me and my disability and they sent me a letter to my email which I printed out and we sent that to the DWP alongside a note that was saying how rude the assessor was.

When I finally got word back from the DWP they had corrected my benefits :).

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pollyanne

your husbands situation sounds like mine and i dont hold out much hope. I feel the assessors job is to try and get as many people off benefits as they can. Warning! they will lull him into a false sense of security by asking loaded questions in a specific way ie do you like to go out walking ? do you have friends? . my husband was treating it as if he was meeting a nice friend but this was a wolf in sheeps clothing!! Be wary! He lost all his PIP and wouldnt appeal!

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Jacacc

Similar to what we went through, my husband got a life award for DLA as he had an RTA 26 years ago and was left in a bad way. He spent almost 3 years in hospital and various brain injury rehabilitation units and then still needed care & therapy at home for another 5 years before they decide he had hit a plateau. Anyway to cut a long story short he was sent for a PIP assessment like your husband 25 miles away from home at 9 am. I asked for a home assessment which I was told they would not do, I put this in writing again and was told no. The DWP & the companies that do the assessment contradict each other / blame each other all the time. The whole situation was so stressful, but we have an understanding doctor who backed us up all the way.

I went to my local MP and got them involved and then to my amazement we got a home visit. We were lucky in that the assessor was very understanding about brain injuries although her training was as at OT. As my husband has trouble with his speech, new people and understanding I was allowed to answer all the questions the assessor put forward as I was the one who filled all the forms in. I am also his official appointee by the DWP / HMRC which might be better for you to get if you don't already have it.

In the end my husband was given PIP for 10 years earlier this year at the full rate of care and mobility. Hopefully we won't hear from PIP for at least 10 years now, but they can always call him back for an assessment when they feel like it.

I would certainly recommend getting your MP involved and also make him aware of the great work Headway do. If you have a good doctor who understands your husbands problems then have a chat with them and also mention the effect it is having on your own health. There is a lot of help and advice out there take as much as you can and if you need an advocates help then take it. I wish you both good luck with this, it will be stressful for you both if you don't get PIP first time around then appeal as 80% of claimants wins their appeals. It is just so sad that you have to go through this awful process to get what your husband deserves. Also do you know that your husband is entitled to a Brain Injury card from Headway. Most assessors do not have an understanding of brain injuries as they are either retired doctors, nurses, OT's, ambulance personnel or some other related health care. Some are totally rude with no empathy the people who they see, they are on bonuses to refuse as many people as they can.

1) Get your MP involved.

2) Try & get a home visit if this suits you.

3) Chat with your doctor about your husband & also how it effects you.

4) Get as much help and information as you can and know your husbands rights.

5) Chat with Citizens advice as they can help and offer advice.

I have also added some useful links below for you to read, I hope these help you as they did me, Take care and good luck to you both;

assets.publishing.service.g...

assets.publishing.service.g...

citizensadvice.org.uk/benef...

advicenow.org.uk/guides/how...

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Shushy
Shushy
in reply to Jacacc

Thanks for all the advice. I’ve now rearranged the appointment for a closer location later in the day. The man I spoke to told me the assessors may not be qualified in head injuries but were suitably qualified to assess the criteria needed. Apparently everyone gets assessed the same regardless of condition. (!) Having worked on the Pathways to Employment project in 2009 I have very little faith in assessors or the companies being paid to do this job. I’m going to review our answers to the original firm and make sure we tell it like it is on his worse day. It’s degrading for my husband to have to go through this- he already feels bad enough about claiming benefits. If he could work he would and if he didn’t need this money I’d tell them to shove their assessment!!!

It’s bad enough to have gone through everything to get to this point without having to go through all the things he can’t do when I spend most of the time trying to be positive about what he’s achieved against all the odds 😡😢

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Jaec

Hi Shusby, I had a brain injury 30 years ago, went through a 6 year court case and was in receipt of dla for years.

When I applied for pip I was turned down at first but I was advised to appeal and I did, and got it. I know they are trying to get certain people out of the system but they are making it impossible for those who do deserve and need some help.

If your husband doesn't get it the first time you have to fight back.

Good luck

Jaec

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Shushy
Shushy
in reply to Jaec

Thanks - our experience is very similar to yours. You have to fight for everything dint you? I’m just so tired of it to be honest. We will definitely appeal if we need to but I really think he’s suffered enough. The DLA was supposed to have been awarded for life - it’s not as if his brain will grow back again!

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Jaec
Jaec
in reply to Shushy

I feel for you both. I have had to get citizens advice to help me with those forms as my dyslexia and memory are so bad. Very frustrating but worth sticking at it.

I have found mindfulness a relief, it has helped me to take a break from life when it gets too much.

Good luck

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WinB

Sorry Shushy as I was out of it the woman helped my hubby fill form out for us but wishing you all the luck, and let them know all short comings it has left him with etc etc. When young I had to go to to Job centre in those days and was told by a woman I do not have epilepsy I have Tantrums. Off went my Dad to give her a telling off !! Hope you get a nice assessor as it makes all the difference.

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Jacki66

Every problem has a range of severities and you need to make it very clear what he's like at his worst. Plus, can he perform the said task safely and to a reasonable standard. This is where most people fall down because they say they can do something but "safely and to a reasonable standard" and the answer is, more often than not, no.

You do not need paperwork. If they want paperwork it is for them to get it, not for you to supply it. They will also understand that he is many years down the line from the injury but a stark reality is that there is no cure, just (as you say) better ways around it and how to live with it.

Please be assured that most of the assessors are pretty sharp. I'm a nurse and some of my friends who trained with me have gone into this as a job. They are all qualified nurses, physiotherapists and occupations therapists. Therefore, they will understand the condition about 90% in the main in my opinion. They are also not decision-makers, but information gatherers for the DWP who make the decisions.

If I can give you any tip, they assess you from the minute you enter the building!

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Jennycat18

Hello make sure you ask for a specialist assessor with a knowledge of the implications of brain injury! Good luck Kate 😀

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KNSJ44

Hi Shushy, as you, my husband suffered a significant TBI 4 years ago. He had to give up work & our circumstances & relationship changed overnight. PIP assessors came to our house ( I believe this is an option on their forms) & decided he was too well, as he presents well despite a limp due to physical loss of a few inches on one leg, but suffers greatly from speech issues, fatigue and memory problems- I agree that many assessors are not able to understand brain injury and it’s consequences. We are lucky that I have been able to return to work and his compensation case is still ongoing , but everything is a battle . If you go to the assessment they will watch him from the moment he gets out of the car to getting back in - take as much medical evidence as you can . Despite this he has been able to get a Blue Badge for his car ! Go figure ! Good Luck x

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Shushy
Shushy
in reply to KNSJ44

Hi - that’s what I’m so worried about! I was told that none of the assessors are experts in head injuries but they treat everybody the same regardless of condition, which is the opposite of equality. Well just gave to hope it goes ok and keep focused on an appeal I think

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eileenleach

My son the same with middle rate dla too n I was worried about changing over to pip cos I do all his forms and paperwork but it wasn’t as bad as I thought, they go through the questions on form mainly and question ur answers so be honest n go into detail about things, they cancelled one assessment Cos the assessor they had wasn’t going to be there on the date they sent us so they must get people with some knowledge of ur disability. My sons front lobal head injury n looks ok n walks n talks but he has memory loss, Anger issues, personality changes, epilepsy n forgetfulness n no warnings to seizures n we came out feeling confident. He got enhanced mobility which he’s never had but got no daily living as he got only 4 points, I searched google n did mandatory and it’s just come Back with standard daily living with 11 points n still enhanced mobility, there was a change in law 2017 for people with epilepsy n I used that for mandatory n didn’t think they’d be able to av an argument as 3 tribunal judges fought to change the law n won n if they didn’t change there decision tribunal would’ve by law, the tribunal judges scored same points I did originally but For enhanced but were not going to push further as standard is fine, oh n my son doesn’t av no medical follow ups as he won’t go he thinks he’s ok, no records to send other than insurance medical notes like you but as long as u can explain ur answers n they are believable u should be fine x

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Shushy

We went yesterday. The assessor was quite nice and a qualified physio so hopefully had some insight into Paul’s condition. We can only wait and see now . Thanks to everyone for their support.

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