Next! (PIP, DWP, and other animals.): This is likely... - Headway


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Next! (PIP, DWP, and other animals.)

Gaia_rising profile image

This is likely to be a long one, if that bothers you, feel free to skip ahead.

SAH February 2015, attempted to return to my old job, with a view to applying for PIP, and reducing my hours. Applied for PIP December 2015, assessed February 2016, declined. Requested MR, had a bit more brain surgery, separated from my husband, work made some structural changes, didn't take the declined MR to tribunal. Effectively lost my job September 2016, but spun out the sick-leave trying to access Neuro and 'Workplace Wellbeing'. Became unemployed and re-applied for PIP March 2017, applied for Universal Credit May 2017, and was placed on 'full commitment' by my 'work coach'. PIP assessment June 2017, declined (0-points, the first application scored 6, and I had more deficits after the second surgery), MR declined, requested tribunal.

Tribunal 11/7/18, panel awarded enhanced on daily living, nothing on mobility. I'm now waiting for DWP to try to jam another spanner in the works RE paying out the PIP, and to see what sort of a dog's bottom they make of my recent 'work capability assessment.'

Breathe. I have the 'statement of recommendations' from the tribunal on my desk, I'm just waiting on the 'award notice', or a letter from DWP saying they intend to contest the panel's decision... I'm not being pessimistic, but I have read that it's likely to be a minimum of 6 weeks before DWP deign to commence the PIP, which, to my mind, should probably have been awarded the first time I claimed.

Right, no, this might end up NOT being a long one, photo-sensitivity is a big issue with me, and the light is coming in here all weird. (I'm an idiot, I can't go upstairs, because I've just bleached the bathroom, and the smell is overpowering, and I can't go out into the garden because I've just washed the kitchen floor. Neuro-psych DID identify issues with my 'executive functioning' and 'attentional switching', I don't always think things through, hence being 'mopped into a corner' at the moment.)

The point that I wanted to make was that the PIP and DWP processes are becoming more stringent, but none of us are becoming any less disabled. We KNOW that there are limited funds 'in the pot', and none of us would go through the demeaning rigmarole of PIP if we had an alternative. 17 months I've been 'in limbo' with the PIP systems and processes, knowing that I'll never realistically work full-time, or in a high-demand job again, the DWP/Universal Credit system wanted me to apply for 'any suitable vacancies', but, without the additional support from PIP, that would have meant full time, minimum wage, and full-time places me, and other people at risk of harm if I have an attentional/cognitive lapse.

The changes to DWP systems and processes 'on paper' are to reduce fraudulent claims, and 'enable' the disabled back into work, that sounds simply spiffing to anyone who isn't disabled, or on benefits, from this side of the system, though, it's atrocious and unfit for purpose. I'm a very tenacious and resilient person, but I've had quite a few points where I've thought "Sod this for a game of soldiers!" The systems are designed to do that, to wear 'us' down to a point where we don't want to keep trying, while the media continues to perpetuate the myths of fraudulent benefit claimants eating take-away in front of huge TV sets, and 'moonlighting' as pole-dancers. (Stop laughing, I had the co-ordination and elegance of a paralytic flamingo BEFORE my brain-leak.)

If you're in the PIP or UC quagmire, please ask for help, I didn't, and it made me incredibly ill. Support services will vary depending on your location, but Headway can usually sign-post. I was too proud, too headstrong to ask for help, and it did me no favours. (Some of the 'help' I was eventually allocated was of the chocolate fireguard variety, but that's just my luck, and my 'projected functionality', I try too hard, and it knackers me up.)

There you go, that's what's been happening with me, DWP have 28 days to 'receive' the tribunal panel's 'statement of recommendations', which they could have had on the day, if they'd bothered to send anyone to my tribunal, and to decide whether to honour or contest it, then there's additional processing time for them to sort the payments. (Three year award, back-dated to March 2017 when I re-applied, it's probable that I'll be called for re-assessment in March 2019, to see if I'm still brain-injured...)

Next, I think the kitchen floor might be dry enough to walk on now, so I'll scuttle into the garden, and see if any of my clothes are still on the washing line in this wind, or if I have to start knocking on the neighbours' doors, and asking "Have you seen my knickers?"

15 Replies

Tenacious people like yourself are needed to keep flying the flag for everyone else. If i hadnt reached retirement age id have kept on banging my head, figuratively of course ive enough brain damage as it is, against that wall.

And apart from that what happened to the like button i just pressed it and it said unlike? I dont need theses minor enhancements! Cos they aren’t its just more technology i cant get my head around!!!!

Janet x

Gaia_rising profile image
Gaia_rising in reply to Kirk5w7

Thanks, Janet. (No idea what's happened to the 'like' button.)

I need to address my mental health, chase up my next scan, badger the consultant to get an appointment about the eyes/vertigo, rather than "You survived, some people aren't that lucky!" brush-offs, and THEN I'll look into which local services might want me as a voluntary advocate for a few hours a week. The judge at the tribunal pointed out how comprehensive and articulate my evidence was, I can still do 'some' things, just not all day.


Kirk5w7 profile image
Kirk5w7 in reply to Gaia_rising

I’ve been contemplating offering my services as a volunteer at the hospital I was treated at, it’s just that I enjoy my own space and time now.

Ridiculous, feeling guilty about that.

I’ve just made an appointment with my vision therapist to see if she can help or point me in the direction of someone who can help with my neck.

The rehab consultant I went back to recently seems to think most of my problems with pressure headaches etc come from tension in my neck and shoulders. I’ve always said I feel fine while lying down, it’s when I raise my head it all goes to s@@@.

We’ll see . I’m sick of the “you survived” scenarios. I need to be me, I remember far too much of how it used to be!!!

Hang tight with your “to do” list it’ll be worth it.


Gaia_rising profile image
Gaia_rising in reply to Kirk5w7

We've said before how alike we are in some respects, both high-functioning before, and both reluctant to accept "That's as good as it's going to get.", I CRIED when the neuro-psych recorded me as low-end-of-average in quite a few categories... ('Highly superior' on the linguistic tests, I'd have been off the scale 'before'...)

I know I still have a way to go, and I'm damned angry that this 'guilty until proven innocent' PIP-process has been so long, and so draining, but I'm 'only' 41, so have years of possible-productivity left. (That sounds rude, reading it back, I meant that I'm not close enough to 'retirement age' to manage on my previous work-pension.)

I'll have a go at that 'putting me first' thing people talk about, and use the breathing-space I should get with the PIP to re-build my currently wonky foundations.

Kirk5w7 profile image
Kirk5w7 in reply to Gaia_rising

Its not rude at all, i wish i had many more years i could use to try to prove them all wrong.

Im only to aware that at 65 i have limited years left to claw my way back to me. But ill have a jolly good stab at trying to.

Ive never needed to be assessed by a neuro psych, i did have a session with one in the rehab unit where i had to copy patterns she made with coloured cubes and i couldnt do it. I got so angry and upset she didnt come back before i left, i signed myself out after 5 weeks, well i could walk by then and i was only getting 20 mins of physio for 5 days a week!!!

After the coloured cube debacle i had my husband bring me jigsaws in and i did a few wasgis’s and sent someone for her and showed her what i could do!!!!

If br just as devastated as you .


Gaia_rising profile image
Gaia_rising in reply to Kirk5w7

The block-sorting one got me too, I've never been a visual-spatial processor, I'm notorious for giving directions including "No, the other left." I was assessed on-ward, 10 days after the surgery, the file notes apparently said I was 'antagonistic'. No s***, Sherlock, I'd just had my head hacksawed open, and some woman was asking me to remember an address, and do maths, nothing made sense.

I self-referred to neuro-psych, because I knew I wasn't running at full capacity a year after the surgery, 'life' got in the way, and I didn't complete the assessments then. Completed them earlier this year, to see if there was anything I should be tackling differently, but it's 'me', I got my usual response of "You're doing really well, considering." (Not well ENOUGH!) I'm my own worst enemy, I used to Mentor 'challenging' adolescents, and deal with their equally challenging parents/carers, so I mentored myself out of most of the really weird/offensive behaviour. "There's nothing else I can offer that you're not already doing." is another thing that is said to me a lot.

Kirk5w7 profile image
Kirk5w7 in reply to Gaia_rising

Like my counsellor said to me, youve thought it all through and worked out the answers yourself, theres not really anything different i can tell you!

I beat the woman with the calculator at a mental arithmetic question she posed me over how much change id have from £20 after buying a range of fish and chips for tea, she got quite cross about that because she needed the calculator and i didnt. Heh Heh. One up for the BI’d!!

Gaia_rising profile image
Gaia_rising in reply to Kirk5w7

Yay, go you for beating the calculator! I'm not a natural mathematician, numbers don't 'stick' with me, my "Gardner's Theory of Multiple Intelligence" is highly skewed towards the linguistic/interpersonal/intrapersonal, but 'before', I could wing it, I can't now.

My counsellor said virtually the same thing to me, that he'd no more strategies than I was already using. He also asked me to stop pre-empting his next question, but that's how my head works, if I'm not one step ahead, I get incredibly anxious. I'll see what the next triage-person at the mental health team makes of me, I'm an interesting case-study, if nothing else.

Hi there,

Just Wanted to say what a giggle I’ve had today in reading your post, you have such a fabulous wit and charm, I love reading your posts. Thank you for the joy of laughter that you’ve given me today (the ‘mopped into a corner ‘ image was sooooo funny) 🤣

Thanks too for the encouragement I felt w’hen reading you had won your pip battle- hallelujah! Fabulous news indeed. I too am in a pip battle, but at an earlier stage than you, I’ve just submitted the request for ‘mandatory reconsideration’ , and I will keep you posted, but I was so delighted to hear your great result.well done for your tenacity . Keep up the good work of keeping some of us sane!😉

Gaia_rising profile image
Gaia_rising in reply to Smilerdi

Thanks, Smilerdi

I'm having a sarcastic little side thought, of producing a set of cards with the things real-life people without disabilities tend to say to me, I could make a little game of it. *Shuffles deck* "At least you still have your sense of humour!", is that your card?

That's pure snark, but I've had three and a half years of people saying "You were SO lucky!" (Yes, thank you, if only I could predict the lottery numbers, instead of surviving a brain haemorrhage, that'd be peachy.) "You don't LOOK disabled!" (Cheers, is it a game of 'Guess Who?', now?) "I don't know how you cope!" (What's the alternative?)

My sarcasm gets me into trouble, and confuses some people, it's another level of 'me' I have to be careful to filter out, depending on the 'audience', it's all well and good with people who 'know' me, but that doesn't always translate well with 'new', or 'official' people. There's a line in my PIP paperwork under 'preparing and cooking meals' something like "The lack of sensation in my left hand leads to frequent cuts and burns, sometimes the knife only stops when it hits bone, thank goodness I'm a vertebrate!"

I hope your Mandatory Reconsideration goes as smoothly as is possible, as I commented previously, the system is becoming more stringent, and the hoops we're having to jump through would challenge Sonic the Hedgehog. Various groups are pressuring the government on the unfit-for-purpose nature of the PIP process, my MP sent a letter (email) I'd sent him to the Secretary of State responsible for whichever revolving-door department is supposed to be in charge of the fiasco this week, and had a 'duly noted' non-response in return. If you haven't already done so, I'd suggest sending a letter or email to your MP, mine put me in touch with an advocate to support me through the process. Citizens Advice might also be able to help, or Headway can advise on any other agencies in your locality that might have capacity. As I said to the advocate, in the waiting room before the tribunal, "Yes, you know the system, but I know 'me'." It's the nuanced adaptations we have to make to everything that don't always come across clearly 'on paper' in the binary tick-box system that PIP is, and a lot of people will fall through the net because the 'decision maker' will skew the data provided to suit their purpose. (I 'can' prepare a simple meal some days, but it takes far longer than it would for a fully able person, and I can't do it every day, or without risk of damage to me or the kitchen, my freezer is full of unlabelled bags and tubs of 'brown stuff', where I've frozen 'the other half' of a meal for the days when I physically can't prep/cook.)

Best of luck going forwards, unless there's a drastic system-change, all of us need to just keep on going, water-on-a-rock style.

Of course I read it all, and though you have different circumstances, like every single brain injured person!!! A point I’m sure no one who doesn’t have a BI never understands. Yes we can’t get better and ultimately are only going to get worse from it as we age - I’ve got a lot worse the past 18 years! It was quite refreshing...if that’s the right word, to read the post as your frustration with the system is very similar to mine! It’s rediculous... the ‘hidden’ disabled folk should have a different test and an easier one at that so I doesn’t cause this weeks months of added stress, fatigue etc ultimately making us all feel worse - seriously do we really want to admit how f*cked (excuse my French but it’s the emphasis needed...) up we all and to try and prove it?! I’m glad the kitchen floor dried and you could hopefully get out to the garden!

Take care, xx

Gaia_rising profile image
Gaia_rising in reply to 19KMcG87

I completely get your point on the inflexibility of the system, and your use of 'French' doesn't bother me, I worked behind the bar in the roughest pub in the village when I was doing my A-levels, I know a lot of words that would make a docker blush.

There's an article on the BBC news website this morning about 'blue badges for hidden disabilities', but I'm concerned that, in light of everything else going pear-shaped in the world, that's just going to lead to more of the "You don't LOOK disabled." guff, and the potential for the 'shop a scrounger' nonsense to start up again.

These systems are punitive, admin-heavy, and an emotional wrecking ball for those of us already struggling. I'm tenacious and resilient, but I had a fair few wobbly episodes, where I was having to repeatedly describe my difficulties in graphic detail, we don't want to focus on what we CAN'T do any more than we have to, and 17+ months of having to repeat all the things I can't do 'normally' nearly broke me. If I could have 'just gotten on with it' without PIP, believe me, I wouldn't have dragged myself through the indignities of repeating over and over again how I get on and off the toilet. (I know it's a technique to catch people lying/embellishing, but it's bloody degrading.)

Yes, the kitchen floor dried, just in time for the heavens to open, my plants will be glad of the drink, but I'll probably spend a week FURIOUS at the door-mat for allowing me to track dirt across the previously clean floor. (It's not the door-mat's fault that the only recent day cool enough for floor-washing was cool because it was about to rain, but I'll probably still call it names you wouldn't say in front of Grandma, it's what I do.)

Haha yes I know a lot worse too, married to a squaddie... but public forum n all I guess!

A BI in itself is just entirely unpredictable every day!!! I mean in the initial interview for PIP recently they asked, so who told you you could only drive an automatic car... well no one but with too many processes at once I am safer to drive an automatic than a manual (even though I passed my test in a manual...!) it is laughable yes but glad I’ve got folk on here in a similar mind set with more ability to write exactly what I think most of the time! 😂 thank you

I saw a picture once, I’ll try and source it but it was along the lines of ‘oh, you don’t look disabled’ to which the reply was ‘oh you don’t look ignorant but I guess you are’ .... you need to see the post I’ll source it 😂

Yes on and off the toilet got me too! I was baffled thankfully husband was there to help me answer...

I guess at least hidden disabilities have actually been admitted to be in existence by the bbc now though!

Gaia_rising profile image
Gaia_rising in reply to 19KMcG87

It's a minefield, isn't it? The phrasing of 'hidden' disabilities is winding me up, we don't set out to 'conceal' anything, but end up adapting to do so, because the rest of the world is abled-shaped. Imagine the looks I'd get if I asked a parent to move their pushchair out of the disabled bay on a bus by asking "Did the condom burst?", that's the level of intrusive and skewed questioning that people who haven't tried to apply for PIP don't appreciate...

🤣 yep! I’ve not thought of it I. That mindset before - probably cos it was drummed in from age 12 it was hidden... as I recovered I just got used to how things ‘should be’ but yes rediculous we shouldn’t need to stay hidden!!!

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