Petition to improve PIP Process for BI: Hi all just... - Headway

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Petition to improve PIP Process for BI


Hi all

just a quick one. Ive seen on here now so many people not happy about the PIP handling of cases for people with BI. This needs to change.

As such, I have made an online petition so hopefully affect this change.

please read and sign. hopefully there will be enough numbers in the end to affect a positive change.

Kind regards


60 Replies

Done.... x

Signed my friend x


Signed 😁

I’ve signed it and shared on Facebook x

thankyou for public fb sharing.


Also done, hopefully many more people will sign this petition and bring about change for people who suffer life long brain injuries., it's a long hard road for them, their families who are often their carers.

hence why the petition. be nice if able to get this through for discussion in house etc.

Signed! 👌🏻

in reply to bbharry

& shared on Twitter!

thanks for your tweet.

To be honest Ive been suffering brain dysfunction since 2001 but didn't even know I could try to apply for benefits because every GP I have seen over the years has been extremely unhelpful and far from forthcoming. After seeing the info on this group & from yourself I am going to look into it next week so thank YOU! 👌🏻🙏🏼

So sorry to hear your GP been extremely unhelpful and far from forthcoming. I suspect this could be the case for a lot of BI People and carers. All the best with your claim.


Thx DA ☺️fingers crossed!

Signed and shared on Facebook.

thankyou for public fb sharing.

How the assessment they do for PIP on people who have a brain injury, can result in zero points! Is gobsmacking.

It sound be impossible to not score any points on the assessment, but they do it all the time.

Brain Injury lives matter!

definitely.. i see no logic in this. perhaps we are the normal ones and they are the one with the problem...

or are they using the wrong test? like trying to grade a fish on its ability to climb a tree?. OK, so you can move a box across the table. by that logic, even a person having a seizure.. (no offence to anyone with epilepsy ok...) would fail to score on this.

which is why I call for a reform to the way that BI is done. or is this now a shifting of the posts once more? see what they can get away with in order to save a few quid..

more likely..

mine got canned because i couldn't fully participate verbally - that was the final decision ..... despite them knowing this. may also look at discrimination too as not provding suitable and accessible methods. but thats another fight..

theres a massive guide document published online a while ago for the assessors.. if i can find it again, will post link to it..

And thanks for your support too.

PIP guidance for medical assessor:

There was a interim service running in the North West during the change over to the new provider. The NHS provided assessors who had knowledge of the claimants disability and feedback from claimants was positive.

I see you've already included that point but you're also asking that a face to face assessment doesn't occur.

There are two problems with this, a medical reports rarely provide clear evidence to satisfy the qualifying criteria and we don't have a shared lexicon of words to describe the symptoms of a ABI, this means we have a additional hurdle in relaying our problems to the DWP via the claim form.

So a face to face assessment by a health professional with knowledge of ABI is probably the best we can hope for.

I Think that shouldn't occur if going to cause harm or trauma etc to the person who the claim is for, at the very least.

thanks for proving the link to these. lets see if we can remove the hurdles at least by assembling a collated list of terminology / lexicons / commonly associated phrases etc, surely this should have been done during the changeover and followed up or started at least.

and i would or one query the reliability of the 'claimants disability and feedback from claimants was positive' - cherry picking or the fox guarding the hen house?

The medical evidence IMO establish the fact that the claimant has suffered a BI, and if coming from a hospital etc, should warrant enough to state that the person will need help.

I wonder, how many BI survivors suffer mental health issues afterwards?

There are more problems with this and it appears geared to not giving the help that people need in a timely manner, putting them under further duress, which is a no-no in the guidance, but often caused by the assessments.

im trying with this petition to remove a lot of the hurdles that people face, and one of the few hurdles i find is that the issues need to be present for a year - if my understanding is correct - which could be why these take so long in general.

thanks for raising a few valid points,


The positive feedback I was referring to came from clients we saw after their assessment.

A significant number of these client were accompanied by a support service worker and they viewed the assessment interview being far better.

Although as far as I know no research was done to see if outcomes were more reliable.

OK, so what about the negative ones? be interesting to find out. as well if research done to see if favourable outcomes from these positive assessment, or even negative assessments see if any correlation between the two.

I'm not sure how you could even do that, as ultimately it's down to a Tribunal and if the assessment was done by a experienced clinician, you'd be less likely to win the appeal. With that in mind a massive benefit would be a experienced panel member with knowledge of the particular disability, rather than the usual GP.

point is most of these 'experienced clinicians' don't have a clue about BI . every doc / psychologist / counsellor ive seen has been gormless in this, referring back to places already been moved on from.

take look at the drs, nurses etc. how many in general have any idea about the effects of BI. now, how many are also assessors. I very much doubt you will find many that are qualified in BI as well as assessors. if you know of any who do know and are good in both fields, please share what you know, all ears.

Kin regards


I meant experience in a specific area, so someone with a Neuro qualification on the Tribunal, as well as making the assessment.

Am I reading this right, that anyone with a ABI who claims PIP, should qualify?

my wording may leave a lot to be desired.

when I wrote it, it was for BI in general where their is medical evidence to state that person X has had a BI, whether acquired, or caused by trauma. as this covers T and A - BI's as both have have a negative affect on both the survivor and family and carers. I have deliberately used the word carers, as this could be a wife / husband / parent(s) child (in some cases sadly) as mostly the carers in who do this, are just that. wife, husband, parent(s) child due to the way that when released from hospital, it appears that it is often to home and 'community support'.

make no bones. a BI WILL affect a person. we WILL need support. its time we HAD that support, WITHOUT having to fight for it. We go through ENOUGH with this on top. just want to help make it easier.

I hope this clears up any confusion. I am happy to re look at the wording and make changes if suggested and see good reason to.

Kind regards


I hope you feel empowered with this petition and you are a good person DA, just wanted to share my gratitude with you promoting this. Thank you

not really feeling empowered by it, not until its done, and changes are made for the better, then its empowerment for all.

its comments like yours and everyone else here just shows that this does need to change.

Those that have read / signed / shared the petition understand what its like, having walked through this with others.

Sadly however, its going to take a lot more people to sign than I personally can reach out to.

I have requested Headway put this petition onto their Fb page etc also, which hopefully will potentially reach a wider audience. Will wait and see.

Massive thanks go to each and everyone of you who is either a survivor, or cares for / knows someone who have already signed / shared etc. Power to you. Im off to recharge.


Well your on the early path that may take a while to gain awareness.

Nevertheless, your determination and empathy and great insight for self and others is admirable. Im actually hoping with timescale and progress I can be active supporting you and others to get voices

This is new to me, but the 3mths with life changing injuries and providing 24/7 care to my husband, it is plainly obvious the system is broken.

Unfortunately the assessors do write untrue statements. They should be held accountable for that.

yes, im pretty sure they would, though this can be given under a request for information.

I’d seen the lies on the report they send, after they had given me 0 points.

Went to tribunal, court awarded me PIP, got over 21 points on the assessment.

Took 2 years. Very stressful.

But what’s stopping the original assessor doing it every day to other vulnerable applicants?

Hi all, been a while but I’m here, hope everyone safe & well.

PIP, cuh. Received a letter couple days ago saying due to the current situation they will be letting my award run for further 6 months, & will look at my claim again March 2021 instead of September 2020. Can’t say I’m happy with this as they dropped me last year from the enhanced to the lower rate after sending out a form asking if their are any changes in my condition. After hospital confirming NO everything is the same, they sent someone out for face to face & decided to put me on lower care & mobility, dropping both parts to just one point on both. I didn’t have the energy or need the bullshit to appeal. So to wait year before they send out a new form was easier than appealing, the time has flown by & now they say I’m ok til March???

Also I just signed your petition, something needs to give, it’s a joke

Take care

Just reading over what I’d written & it sounds as though I was awarded 1 point. What I should have said they awarded me 11 for care, I was awarded 19 originally & 10 I’m mobility, originally 16 not bad considering no change from when I first claimed. Other than I sleep much longer & struggle to stay awake more than 6 hours, my children do all the cooking & remind me I must eat (I never feel hunger) lol

I had 3 brain surgeries in 2016, my life totally changed but hey PIP say I have no restrictions, oh & I have adequate grip lol. I wish I had, had the strength in me to appeal

Stay strong

Hi Sammm2k

Thanks for the sign. as you say, something needs to give.

Im happy for you that you dont have to go through this for another few months, but I feel that after a certain time there isnt any further marked improvement so why the need to reassess.

Whilst I have more than adequate grip to change the assessor to a smurf colour *not advocating violence here* it gets me to this point sometimes where it can be not a good situation especially when dealing with others. but that aside...

its appalling in ts own right how you where reduced rate despite info to the contrary. do they not understand? grrr.

me, i sleep on avg about 6 hours a night, even prior to this. but constantly tired and often grumpy so not a good combo. Glad to hear your kids supporting yu with cooking - hope your able to help with washing up / loading dishwasher etc :-)

nd yes i find it frustrating too that you have to appeal for what should be getting.. recent info suggest that tribunal - over 60% award in favour of claimer -- makes you wonder how often the assessors are wrong and why nit picked up at a reconsideration - however points can go down as well as up in this case..

you stay strong too.


I'm certainly out of the loop following my ABI and even more so as I've had to stop working recently.

However the 60% sucess at appeal is probably right, so how much is that costing the Gov. and why are they paying for such a incompetent outsourced service.

I'd suggest that many people can't face the stress of going through the appeal process, so it may make financial sense to the Treasury, shameful.

Well, in light of recent circumstances, I think they have certainly robbed the piggy bank...

and yes, it is shameful that the stress of things makes the bean counters happy.

and yes, getting thrown out of the loop, in any proffession, its hard, even more so when having to give up work because of ABI / TBI. may I ask, without going into too much, what did you do prior to your ABI?

I supervised specialist solicitors in a Law Center, too demanding after a ABI but I tried for a long time, I could still do it but the cost was total CFS and burn out.

ok so without taxing you too much, what would you think in your opinion, the success chance this has? Sorry to hear of your burn out. I can appreciate you trying to maintain a 'normal life' afterwards, though sadly for a lot of us, probably all of us, this is no longer an option as you state, complete drained n burned out, with nothing left in the tank, especially with all the intricacies of law and potential interpretation.. I hear you, especially coming from a 'mentally focused vocation' such as yourself.

Me, I used to be an IT Tech, so lots of things to remember in terms of both hardware / software / networking plus new stuff all the time etc, so to some degree, I understand a mental burnout especially doing it after BI. not fun.


OMG, you're asking the wrong or right person with that one, I'm may get some hate PMs after this one.

Going back to the Blair Gov. I was one of the people advising them and that eventually led to the current points system for ESA/UC. Their new future was sold as a great dream, say no more.

No direct involvement but I do know before the DLA to PIP there was a lot of discussion with various W.B. and disability organisations, so they could get it right.

I think you mentioned your MP and I've have been impressed how some do take up a cause and if they are the party in power you have a greater chance that something may change.

I'm sure you weren't hoping for that message but never give up, is my philosophy.

apologies for any personal attack on you on here. I hope that there isn't.

As for your involvement in the advisory process, the way that I see it is that is is just that, from what you have said. talking about advising.

it would appear that the government doesn't always follow the advice given, but only that which meets its own criteria and objectives... if they dont like it, they discard the advice or find someone else / alt org etc that will be its 'yes man' ....

as for political leanings, all appear to have their own vested interests.. look at them all at the moment.. various monetary deals with various over-the-pond buddies etc.. was the same before..

when you where advising, was this before or after your ABI? and if it was before, if you could go back with the knowledge you have now, advise differently? do you think that they have gotten it right (in a well balanced way) or that there could be room for improvement. And thanks for your insight.

How often does a process review take place?

You can PM me on any of this if you wish. that way, minimises any personal attacks on yourslf.

to give up.. please define? think it comes under the heading dead?

Absolutely not the attack part was a example of my sense of humour.

I've had 2 bleeds and the Blair debacle was before my 1st.

When there's a proposed change in social welfare issues it's common for the Gov. to invite and organise input from organisations, I expect Headway may have been party to the DLA to PIP process.

I know CAB are very active with ongoing Social Policy issues, in fact CAB was my start, a 'something to do' after my degree.

Again before my 1st bleed but after the Blair debacle, I was involved with the big changes to Legal Aid, at the time I was jokingly given the label Nostrademus but unfortunately I was right.

I know a lot of very good advise was given about how PIP should be structured and we all know what's happened with that.

You may have missed it but NICE invited those with a interest to apply to be involved with a review of service provision after ABI discharge, unfortunately the deadline was so short I missed it.

I should say both the WB & Legal Aid issues really went downhill under Cameron along with the whole Charitable sector, does anyone remember his Big Society speech.

I remember being in the Pub with CAB people and saying we're all doomed now.


I'm probably giving a really bad impression of the Blair Gov., it was relatively minor groans, whos foundations were amplified by further changes.

you paint it as you see it. you would hope that would be the case that verious places get invited, but it would take someone with insight to invite them, and not just leave the invite in the to-do pile.. and conversely, accepting and either attending or submitting information to welfare changes.

As you are probably aware of recent 'contribution and keep quiet' to CAB - I for one now have little.

It would appear that since the early 2010's that that everything has got to hell in a handbasket for the everyday people.

I wonder if all this did cause your 1st bleed.. sorry.. my humour..

appears that .gov taken away rights to challenge them and get help with legal matters in attempt to shut down the complaints etc

so you describe yourself as a visionary then?

nope wasnt aware of NICE - not my field. but again, why the short deadline? you only found out a few days before, or was it only open for a short time?

so basically they are building on something thats potentially very shaky and jenga?

Oh, did you catch the news yesterday about the 4 women who complained about the way the system calculates payments with regards to being payed on a certain day and the way the system is flawed and took a few yrs and gov trying to stop it.. judge said it was illegal. cant find the link, but im sure you will if you have a look..

power to them!

The NICE invite was posted here by Headway and I went to link but it had closed.

I think many on here could tell a story so NICE could hopefully improve Neurological services, we're all experts here.

dont get me started on neuro services...

just gone through some old paperwork - didn't realise id been referred to by docs / hospital etc, only to find that the person ( a few months after) gone onto new pastures etc and now only dealt with children. shunted back through that trail back to headway.. who had signed me off their books prior because i could do 'on paper' - not in a practical needed way - things dont link in my head that way' budgeting and other 'life skills'

still have problems dealing with money, cooking people etc ...

yep.. melted that sucker once it went it. ex complained about smell.. what smell?? oops...

There you go this site should have sent Team Hit Squad (THS).

You're experience sounds similar to mine.

I forgot to address one question have a look at my profile info there.

ok im confused, easily done!

who is this Team Hit Squad?

is this part reference to your current employment as stated in your Bio? or am i reading two different things?

so would that be MIND. the Disability Association

or Mind the Disability - Association?

i can google-fu for the former, but not the latter.

Glad to hear that your still using your skills and have found a nice niche to work in with regards to Disability Equality - this is good as this is another thing that needs to be addressed.

Keep up the good fight. May not be on the winning side, but deffo on the right side..

Kind regards


Team Hit Squad was a joke for angry service users from this forum, who could have got on the NICE group and complained.

Disability Association was a previous employer who folded due to lack of funding.

I've kept in vague to remain anonymous, as any potential employer may think I'm too radical, although they'd probably find out I'm just what they need at interview

At the moment I'm unemployed, your confusion is probably a result of my ABI.

its possible, not to mention own affliction.

ps, update bio.. ;-) as not clear info or out of date info in your bio or deliberate...

as for being radical for any potential employer. sometimes employers need a kick up the ar** and a perspective change.

but sadly, most want obedient compliant and malleable staff.. if not, your accused of not fitting in with the rest of the staff - p45 in the post mate.

was working for agency (well known one) at one point few years ago, post bi, when they just after they changed the times in shifts for breaks in law... if that makes sense. 7 hours into 12 hr shift, still no break.. complained - at first quietly, then verbally... next day - no work.. at least for me, despite needing the staff...

suited me. wouldn't want to work full time for a well known agency company as well as a well know client company who doesn't follow the law on things. if one broke, make wonder what others.. especially with the amount of white, non English speakers on the floor at the time..

dilligaf if someone likes me.. let you work that one out... :-)

The agencies I've worked for have all been impartial, so I couldn't go on local radio, representing them and say Boris is B******, but I can here.

When I first joined this forum, the agency I worked for wouldn't have been happy if people knew who I was.

They would have probably lost their funding much earlier if someone had recognised me.

low life - high places.

to be fair, you would have probably been shown the door prior and possibly some gagging clause into your initial contract to start with.

I mean things like the OSA, etc etc - these things need need to have tight lid on.

but transparency breeds trust. but being secretive breeds mistrust.. like why cant get a straight answer from a politician or other branch of gov or department.

straight questions. straight answers. easy - no misunderstanding. dont have make it hard.

but opinion control 1984 all over it, not just talking about surveillance and double talk either.

some agencies, thinking of a few in particular, needs defending.. and more funding to those that tryly matter.

glad you feel you can express stuff you couldn't say elsewhere as your example illustrates..

Signed, shared and contributed. Well done and thank you. Not sure why I didnt think of it!

you probbly have had thought cross your mind.

however, it would appear that anything to get a look in would require at least 10,000 signatures before even looked at.. long way off yet. but thanks for your support.

Kind regards


So my husband sustained TBI of the following March 2020.

Right Temporal Contusion, Subarachnoid Hemorrhage (SAH), Right Sided Transverse Venus Sinus Thrombosis, Small Subdural Haematoma and Left Petrous Temporal Fracture. ICP Monitor required (still healing)

Pips have recieved form and now replied they will make decision within 6wks . My husband recieves 24/7 care, still not met Cognitive Baseline Assessment and when behaviour peaks residential care is offered when im having difficulties (i refuse though). Fatigue, memory, speech aswell.

So now we wait, im really anxious with what im seeing and hearing about PIPS poor decision outcomes. Think im going to familarize myself with Appeals so i can act straight away

ok my first suggestion to you would be not to read everything. ;-) hard to I know, but why stress yourself out when you have enough to do. by all means, get yourself a bit of a grounding in the processes, but make yourself TOP priority. Sorry to hear 2020 hasnt been your year. It still fairly early days in recovery.

Look after yourself and wish your husband a slow but but good recovery. is this care your husband getting, is that 'care in the community'? by any chance?

Kind regards


No by myself, his pathway plan not completed due to virus, no offer of support in home, theý automatically offer residential.

I emailed my local headway while back for advise, what should be happening, no contact from them yet. I feel like ive been left to dry from family, professionals and community.

I just dont know what to do or what should i be asking BI Team.

big massive hugs to you right now.

times are very difficult in terms of support, however, hopefully soon they will start to resume their services. keep on at them via email / phone etc. shows you have contacted them and in a time like this any good advice is welcome.

I am well aware of the levels of support given. Have you tried your local social services?.

Family support - this can be a bit touchy - after all potentially imo can be seen by some as your husband is to be shielded due to poor health, commnunity, forget it, everyone out for themselves (ok so a tad cynical for some..) and some professionals are probably going to use covid as a 'get out of work free' card... apoligies for being cynical but in my experiance with support, even prior, has left a very bad taste in my mouth. I hope however once covid clears up enough, that your support becomes visible. for the moment, your stuck with us on here.

I hope your area would be better in normal circumstances. Are you out in the sticks or major city? dont have to be specific but it could be there is very few people in your area normally dealing with this.

with regards helping your husband, create a journal - so you dont have to keep it in your head. good days / bad days / triggers / flashpoints / any ideas you have.

I am wondering wether or not to suggest PECs cards for communication. ill leave it in just in case it may help with communication. basic stuff like food / hygiene / mood / drink etc depending on your husbands level of ability to communicate. please note. his smarts are still there. just needs to find new way out. id break out a few simple games if not only to pass the time.. cards - go-fish, snap, im sure there are plenty of card games may help with memory. limit it though so not to overwhelmed.

not sure if any of will help..

Thank you.

Signed and will share this.

Please everyone, share this with as many people as you can.

200 signatures is a good target but 1,000 will get it noticed more.

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