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pip update

On Dec 23rd it was official according to my pip assessor who by the way seemed under the impression you have to be a dribbling heap in a chair (please nobody take offence) to have a ABI it was obvious from the outset she didn't know anything about any sort of brain injury, now I have a hard time talking to people let alone to the back of someone head! who is constantly typing furiously, even though you have said nothing

She gave me 0 for everything this has made me feel like I have made everything up and I am a complete fraud but to top it all if it make you feel worthless if my anoxic brain injury has taught me anything it is to stay away for people and situations like this

what really bugs me she asked me if I used a sat nav? yes I did (and still got lost) what I did not get a chance to tell her was Its only like 2.1 miles away in the next village

I cant appeal it just to much, or complain about my assessor

sometimes I wish I could use the phone to have a good rant and rave at these people but I cant

what a lovely Christmas present the DWP gave me no wonder the suicide rate are high after trying to claim this

every one have a good day sorry about the rant


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Make sure you appeal, I had to and thankfully they changed their minds and gave me my PIP back. Good Luck

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I'm so sorry Lew- Ann, that you have been refused and it has made you feel like this.

Some of these assessors need to ' walk a mile in our shoes'.

I have never applied for this ( as my son still lives at home and can help with bills ) but have read many posts where first time refusal seems to be common practice and appeal is standard.

It shouldn't have to be such a battle for genuine people, should it ? The new tighter government restrictions have really made life harder than it should be.

I will add a link to give you an idea on the scoring system,


Note the importance of being able to do the activities stated repeatedly, to the same standard, taking fatigue, motivation, pain etc into account. I can do many of these things - sometimes, but not always reliably. I think that is where some people may fall down. Think of it as being asked to do all these things on your very worst day for a true picture into your problems.

Take care,

Angela x


angela pip isnt incme based as youve heard yes you need an assessment .

i think you should read it as well ......you maybe surprised



Thanks Steve,

I am aware that it is for personal use and not income related, reason why I have thus far not felt the need to apply is the fact that I have been able to work part time in a very physical role - I did not feel I would qualify ( I have done the self assessment questionnaire before, for curiosity ).

I am sure I would have during recent illness but as it has been short lived and it appears I may regain the ability to continue at my job I feel that once again I will be considered too capable to qualify.

There are many much worse off than me, physically and cognitively for whom employment is not an option . x


I had my PIP assessment in summer , August I think. The girl typing was just not medically trained. With quick speed I received a letter confirming I have no neurological problems as I could answer and concentrate well during the assessment. My partner attended with me and said I this was not the case.

PLEASE request mandatory reconsideration, which is the first process. They will probably refuse this consideration too. I have requested tribunal hearing which is independent from DWP. They have to submit their evidence within 28 days. We have 20 weeks to complete ours. Please contact CAB and ask for an appointment with welfare and benefits advisor, who frequently deal with PIP cases and help you through the the process. I was informed by my neurologist that most of his patients hav had to to go to tribunal.

1. They are cutting the DWP benefits. Part of our lovely government.

2. Brain injury is complicated and to a large extent invisible. If you have any evidence from doctors, therapists, occupational therapists, physics, neurologists to confirm your injury, you need to send it in.

I have argued I my appointment was in a controlled environment , I.e. No distraction, noise, other people chatting.

They want people to not appeal, and say the person is medically trained, but it needs a trained neuropsychologist or neuro specialist. Even my GP says she knows little of brain injury. They are trying to put us of going through the process .

Please try and appeal and good luck


I've been lucky to date and have not had to go throught the PIP assesment although did have an ATOS assesment (two cancelled appointments by ATOS, one 24 hours notice the other at time of appointment resulting in a third appointment, this time a home visit) for ESA. I am currently still under DLA which was renewed last year and I am told is now valid till 2020 unluss my condition changes either for better OR worse then I will have to apply for PIP and go throught their assesment process and as after three and half years the neurosurgeons are now concidering surgery means that should that happen I will or may have to be re-assesed dependant on the outcome of surgery (previously been told inoperable but this seems to have changed) also dependant how long I am an in-patient the hassle of involving ESA.

I hope you seek the proper advice as recommended here and the guidance of Angela somehow finding the strenght to appeal.

It's funny how the minority that cheat the system and caused this mess still seem to get through while those who genuinely need help don't. Probably because the those in need are too honest for the system while the cheaters have no qualms in lying and knowing what to lye about.

I'd like to see what the actual costs are of implementing this, making assesments, fighting and loosing appeals and how it compares to the cost of, wrongly maybe, letting the minority play the system. I am convinced the current system , notably run by private companies at a profit, is more costly than the alternative in time, administration, facilities and court costs from appeals.

At some point somebody will expose the unworthy for the frauds they are or they will trip over their own feet from greed without having to put the rest of us through hell.


lew ann did you go to the assessment on your own ? you can use ( which means you can set up a sat nav ) a sat nav . there not bothered about how far you were going plus you turned up for the assessment on your own.

as far as the assessors notes from dwp she has no choice but to mark you down.

as you know ( unless youre moving to pip from dla ) you need a min score of 8 to get the lowler care and over 12 for the higher rate and its the same for mobility.

i take it you have phoned to say you are appealing ( if you have your payments will continue until the outcome of the appeal is known ) make sure you get all the medical evidence you require prior to your appeal date.

on the panel is a solicitor for the legalities and a dr who should be able to understand your diagnosis when he or she reports back

good luck



Yep, I've got that particular t shirt myself. Appeal, appeal, appeal. Even go to a tribunal if you have to. Get letters of support from anyone you have dealt with in the NHS, doctor, neurologist, etc. Seriously the time it takes to gather the support is well worth it. Worked for me, I even got my MP involved. It's surprising how minds change when an MP starts pestering them.

The assessor CAN'T and wont dismiss all of that. And make certain you try not to go to the appeal by yourself. It all worked for me, as I described on here three years ago.

Good luck, you CAN win this fight.



I was initially told under ESA that I was fit to work. It took months for the correct Dr led assessment to happen and the Dr who came from Nottingham or something was a robot, bedside manner non existent. He asked questions which I struggled to answer coherently, saw I could walk (but not v far or well) made me wave my arms about variously, then within weeks sent a letter saying get to work.

My neuropsych was horrified. She wrote a strongly worded letter explaining my cognitive dysfunction and stamina issues. I went back and appealed with supporting evidence from her and others and was awarded ESA until my pension finally kicked in (at which point it stopped, because even the contributory I.e. non means tested ESA is means tested if you are in receipt of a pension...go figure)

I was quite reluctant to attend the PIP assessment earlier this year (note, Sporan - my previous DLA award was to July 2016 but that didn't stop them calling me back way ahead of that date) simply because at the time I received my appointment letter things seemed to be on the up and they simply do not understand the impact of fluctuating conditions. Trying to change the date I was told I would have to go to Peterborough. By the time the appointment came things were on the backwards slide, and by the time I got to Peterborough that morning I was up against it stamina wise. My assessor was kind and patient, and seemed to know a bit about ME but nothing about aneurysms. I struggled with questions, struggled with the limited physical assessment and left thinking it was all in the balance. This time I got a letter a few weeks later awarding me higher level care and mobility.

Moral of the story is that it is a total lottery. Each assessor has a different process, approach and reaction to you. Don't be put off by the first one, and always appeal. Always send in doctors and specialists letters in support. Check out what charities such as Headway produce in their advice packs re claiming and use any language they provide verbatim.

One of the key issues for me is my inability to do anything much 'repeatedly, reliably and safely' - this phrase was inserted into the guidance for ESA following a review after various charities and support groups complaints that the assessment did not deal properly with fluctuating conditions. It is key to explaining problems for PIP too.

It will I suspect apply to anyone with BI - in my case it's currently as a result of ME although I guess my forthcoming brain surgery will simply exacerbate the existing symptoms - but I have been so able to relate to people's stories on here already, because my ME, being a neurological condition, has severely damaged my brain and I seem to be affected in very similar ways.

I am sure that focusing on this is key to explaining the difficulties. So for the inability to do something repeatedly - this can be because the fatigue hits in, or because having been shown how to do something once you then can't remember how to do it again, or because a distraction kicks in and you wander off to do something else instead....all is relevant. Reliably - all of the above, plus the fact that on occasion a flare up of symptoms, or an unexpectedly bad response to an infection as simple as a common cold, means that you are suddenly in bed for 2 weeks flat out... Safely - well I doubt there is anyone here who doesn't regularly, as I do, try to burn the house down by leaving pans on/the gas on/ candles lit. Or flood the house by leaving taps on. On drop things, like glass and knives, all the time. Or think they can carry a heavy pan of boiling veg to the sink only to discover halfway across the kitchen that actually today if they don't put it down on the floor right now they will be finding the contents all over the floor instead.

But of course you could go work full time....doing what exactly? Even assuming I could get a job to lift 2p pieces and put them in neat piles of 10 (and sorting our copper jar pre-Christmas suggests otherwise) I couldn't do it all day because my arms would stop working. I would then be off work the next day because my arms wouldn't respond. And my manager would be setting up a capability interview in the meantime because the previous days piles would be of 8, 10 and 12p, with the odd 11p thrown in for good measure. πŸ˜†


Oh shame. That's so awful! I think you should appeal!

Good luck, and all the best!


People like who you spoke to shouldn't work in the DWP.


Department for Work and Pensions and this advisor somehow works there?

It doesn't make any sense to me at all.

They support people by dishing out money and with all these problems you hear about involving the DWP, it sounds like they want to take it all back!

So what is the actual point in having a DWP in the first place?


Hi Lew-ann

You should definitely appeal a friend of mine, who has liver disease and encephalitis caused by it, was turned down. He appealed, with the support of his wife and the decision was changed they got advice from Citizens Advice Bureau don't know if that is any help but good luck


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My husband has an assessment on Monday re his PIP. He has lost about 10 jobs since his TBI as he says or does things to offend!

He went through this years ago just after his accident as he was on sickness benefit and they took it off him said he was fit to work! He had only been getting this for weeks before taking it back off him. I was with him for this and he was asked to spell World backwards and couldn't do it, he was asked to take 7 away from 100 and to continue taking 7 off he couldn't. I told Dr how it was at home with his mood swings/inappropriate behaviours etc. Anyhow he was taken off sickness benefit as he scored 0. DR said he did everything he was asked.. Could not believe what I was reading. Appealed went to panel told they sympathised with me and could see his

problems but because he could dress feed and walk himself he did not fit the criteria.

Needless to say I am not holding out for a positive result this time either but I will appeal if its a no. Watch this space!


Hmmm, disheartening.

I filled in the forms, which were delayed in getting to me by the Christmas post, triggering another letter, saying "If you don't return the forms by this date, your claim will be disallowed, and you'll have to start again..." I now have a date for the face-to-face assessment, and a bit of internet research has turned up that LOTS of people have their first assessment cancelled at short notice- another point for us to go "Oh, well, I'll not bother, then."?

I'm in an awkward situation in that I AM working (I know, it's not means-tested), but I'm not reliable at work, between the exhaustion, the brain-fog, and the frontal-lobe damage irritability meaning that I quite frequently have to leave rooms before I say/do something inappropriate, I don't suppose I'm far off being called into my manager's office for 'a chat'. I fully appreciate that on a 'good' day, nobody but me knows I have an ABI, but it's exceptionally draining keeping it that way.

I'm trying to do things right, and prevent the 'invisible illness' impacting on others, and, most of the time, I do a really good job of it. Then go into my bedroom, and not-cry, because I hate everything, and all of it, and wish it would just STOP. (No, I'm not suicidal, that's not in my nature, I just keep going.) I had a couple of months on anti-depressants, which led to a blind headache, and another half-a-stone weight-loss, I can't exist in the SSRI fog, because it takes away the mindfulness and watchfulness that keeps me safe. Catch-22, the fog takes some of the irritability, but leaves me vulnerable to sitting on my office floor, blind in one eye, and almost blind in the other, unable to articulate to colleagues that I thought I might need an ambulance.

I've had my first appointment with neuro-psychology, although the lovely chap I saw was a clinical psych, not a neuro-psych, he did know his stuff about ABI, and has reassured me that what I'm going through isn't that abnormal. I have my surgery date, roughly six weeks from now, and, although I had hoped that the PIP-claim would be finalised by then, it probably won't. Que sera sera, I imagine I'll be knocked back, and then have time to provide MORE evidence about the second surgery, and further neuro-pysch assessment...

We'll see, I'm superficially functional, and that's what might well trip me up... I'll let you know.

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Well what a joke the assessment for PIP was for my husband...cognitive test... Spell world backwards, managed although slow, take 7 from 100 and back struggled a bit with that got few wrong, given 3 words cat, dog, ball, asked him to remember them and silly me I thought he would be asked to repeat the words later on during assessment but no right after she says can you tell me the 3 words I just told you and my husband repeats words. Asked what problems he faced and if it affected him daily. I filled her in about that! Told her every single day he offends someone, how he is having difficulty with facial recognition/mood swings/inappropriate language and behaviours/losing job after job because of this. Lost all his friends except 1 but I don't think she was even listening or cared to be honest. Three weeks for decision. As I said previously wont hold my breathe..

I think I will ask them to live with my husband for a day and then see why asking him to spell world backwards has any relevance to the problems he has every single day.

Rant over...Will update as soon as I hear. xx


I've been awaiting my decision since November, At beginning of january i got call from this doctor.. since av called and ever since its been in the hands of case manager who seems to be taken a long time to give results, oh i didnt need a interview which why im worried


Update on my husbands PIP and to no surprise to me he scored 0 so no award.

What a lot of lies, I was with him I told the assessor that I have to deal with budgeting decisions/read and help my husband to understand complex written information/sort his medication out for the day as he will forget/remind him of doctor/medical/dental appointments. Make all the dinners unless I am there to help him as he forgets he has left pots on and can not smell burning as has lost his sense of smell/taste since his accident.

He had a melt down said he is not appealing as cant handle it. He got up with the TV remote and started biting down on it shouting do you want me to be a dribbling Sp.... calling me every hurtful thing he could think of and my goodness the insults roll on and on until he is exhausted. ..Yes that is normal behaviour of a grown up man and they say he has NO cognitive problems as he can spell WORLD backwards which took him 5 minutes to do as he struggled.... What the heck am I supposed to do here?

We have an appointment with Neurologist in 2 weeks, (which I have fought for for years too) because he has had more episodes of unexplained collapse last one cracked his head on tiled floors and passed out a further 4 times after that. I will be discussing this with Consultant to see if he can help with claim.

I feel so angry about this why do these people get away with this? Must be one of the worst disabilities to prove because its not visible.


lew anne similar thing happened to a friend of mine, he has a tbi you say something to him and hes forgotten what youve said before youve finished.

his assessment was for the change over from dla to pip, he usually went with his partner and she drives, this time however she was very poorly, so he drove himself.....and guess what the first question was ?

you dont say why you cant appeal


It's just me by myself, no partner, no friends just being in certain situations make my blood run cold amongst other things you need backup to go against these people I now know why the suicide rate it high after one of these interrogations


I was assessed, and, predictably, because I'd made my own way there, with my boots on the right feet, I have been declined. I was in one of my hyper-productive crisis-states when I arrived, after going aphasic on the second bus, not being able to ask the driver where to get off, just waving the appointment letter at him, and saying "I don't know where I'm going!", instead of "Will you tell me when to get off." Cut to me speed-walking through a rough-as-a-bear's-a**e area of the city, desperately trying to find the assessment centre in time for the appointment...

My inbuilt PTSD detach-cope-get-through didn't help one bit, BUT, because I was in crisis-mode, I have absolute recollection of the entire appointment. No, I couldn't spell 'world' backwards, and the words to remember were dog, mouse, and rabbit. Crisis mode is exceptionally productive, but massively emotionally draining. I've composed my 'Mandatory Reconsider' letter, unpicking that a one-hour assessment of me, in one particular mental state is not an accurate reflection of my day-to-day needs, and that some of the information they've recorded is incorrect, and that they have omitted certain key points...

We'll see, it's the system I'm angry at, not the poor chap who sat and worked through the form, seeing where he could, effectively call me a liar, because the details I'd recorded on the form were not what was sitting in front of him. (He hadn't risk assessed the room for lone working, his chair was in a vulnerable location, if I had snapped and bitten him, when he asked me, for the third time to spell 'world' backwards, instead of taking a tissue from the desk, and rolling it into a ball in my hand, to give my brain something to focus on...)

Systems, processes, procedures. I can completely see how people just give up at this stage, whether on the claim, or altogether. My response is legal-safe, and clear about how one 'snapshot' assessment, in an unfamiliar environment, which always makes me a bit risk-twitchy is not an accurate reflection of the additional needs I have. I accept entirely that I'm not as impeded as some, but, if the PIP is meant to allow people to remain independent, I've provided a clear statement on each point as to how PIP would assist me, and prevent me from becoming a drain on other government resources, or a statistic.

Legal-safe, I can do, balanced, and reasoned arguments, given time and distance, I can do. Fighting, hell, yes, fighting is what I do very best of all. What I can't do is repeatedly, reliably, and safely complete the 'basic' stuff, it's like my brain only works when it's in hyper-mode, anything less than full-pelt, and I'm standing in the bedroom, with a teaspoon in one hand, wondering what the chuff I'm doing.

I'll let you know how I get on...


Hi I am new on this forum, I am mum to my son who suffered a severe ABI a few years ago. My lovely lad has just been informed he has lost his DLA following a horrendous CAPITA assessment and I am convinced this is because he works full time in a job where he is 100% supervised plus he has a specialist support worker. 0 points for every descriptor for PIP confirms to me the assessor knew nothing about brain injury.

Has anyone successfully challenged a negative decision received?

I am so angry and distraught on his behalf :(


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