Compensating/Internalising?

[Gaia_rising]

I suppose I'm just venting, I'm not having a particularly positive experience of Universal Credit and PIP right now, so there's a lot of reflective thought. (I'm not at crisis point, and I am booked in to see my GP next week, my 'emotional well-being' needs a serious tweak.)

There's 300+ pages of DWP/ATOS 'evidence' on why they've declined to award my PIP claim sitting on a cupboard behind me. Most of it is bad photocopies of the original medical evidence I sent them. I dread to think what the cost for photocopying alone must come to, before we even get onto the contentious 'Oops, we hoped nobody would notice.' issue around the reviews where they've declined to award cases under the 'overwhelming psychological distress' descriptor in the 'moving around' section.

Setting aside the fact that the DWP/ATOS end of the paperwork looks like it was typed by a monkey, and then put back and forth through Google Translate several times, I'm hung up on phrases that run through my official medical notes. 'Extensive, exhausting compensating behaviours' is a clear favourite, 'should improve over time' less-so. In the early days, and, I accept that I'm still in them, my SAH was only February 2015, there was a lot of "That should improve over time.", coupled with "You were lucky to survive, some people don't." I suspect that a lot of us had similar responses.

My issue is that none of my vast and debilitating range of side-issues really did 'improve over time', and the 'you were lucky' responses made me feel guilty about complaining. I stopped complaining, and tried to 'get on with it', nobody likes a moaner, do they. (Slight complicating issue in that the ex's Mum died from a brain haemorrhage when he was 11, an extra layer of survivor-guilt, there, because I'd come through what killed his sainted mother 'apparently' unscathed. It's complicated. I'm complicated.) I know that 'covering things up, so I didn't upset the ex or our son' was a poor choice of coping mechanism, BUT, every time I tried the 'ask for help' route, medically, or at work, there wasn't any help available, I was stuck in the land of wait-it-out.

I acknowledge that I made some poor choices, and that some of my behaviours weren't ideal. I am aware that the situation I'm in now is, in part, down to how much I internalised my difficulties, to 'prove I could cope', and 'not upset other people.' (Like not upsetting the girls in the office who were CONSTANTLY shrieking about Slimming World with the fact that I'd lost over 3st, and you could see my bones through my skin...)

The situation that I'm in now is 'awaiting PIP Tribunal', the start-date for this application was 14/3/17, the process is making me more-ill. I do understand that the previous disability benefit systems might have been open to exploitation, and that more rigour was needed, to reduce the number of dubious claims, but the PIP system is atrocious. It's very much 'guilty until proven innocent', with all the "You said you had difficulties with... I have decided that you can..." statements in the decision-maker's reports. I'm frustrated, I'm more than that, I'm angry, I'm furious, because at no point did I say I "could not" complete the descriptor-activities, I evidenced that I had difficulties completing most of them repeatedly, reliably, and within a reasonable time.

I 'can' microwave a bowl of soup, but I have to stay in the kitchen while I do it, or I'm prone to wandering off, and having a few days of "What's that SMELL?", before I find Cousin It in the microwave.

I 'can' wash my upper and lower body, but I very frequently fog-out on part of the process, and get out of the bath with one armpit shaved, or the conditioner still in my hair, and have to get back in.

I 'can' get myself on and off the toilet, by holding onto the bath-side and radiator, who doesn't love having to keep repeating to strangers how they mount and dismount the lavatory...?

What the PIP-system, the Universal Credit system, and every well-meaning acquaintance who says "Can't you just...?" (In-joke between my son and I "Have you tried just NOT having brain injuries, Mum?") don't take into account is the extra energy I think we ALL expend compensating for our various deficits, and the emotional energy of internalising our difficulties. I usually don't post on here when I know I'm in one of my low-phases, I don't want to appear to be negative, or to 'scare off' new members. (New members, I'm just having a rant, I am having a bad day, not all of the days are this bad, and, even when they are, they pass.)

No idea where I'm going with this now, I'm just conscious that most of us make our own adaptations to remain as functional as we can, and that some of us, whether consciously, or subconsciously, do try to manage everything ourselves. Vent over, I think, I'll wait to see if the post brings my PIP Tribunal date, or whether the 'review of existing claims' knocks it back even further.

[Pip70]

Hey! Sounds like we r going thro some same crap with the benefits system! I have brain damage caused by Congential hydrocephalus and up until Oct last year was employed and never claimed benefits so it s all new to me! l get basic mobility pip and now ESA based on my NI contributions but I wonder where I will be when that ends at the end of this year? Kate 😀

[Gaia_rising in reply to Pip70]

Hello, Kate-

Yes, I get where you're coming from, I've been employed since I left school (about a million years ago), so the benefits system is completely alien to me. I went back to work after my SAH, but it didn't quite work according to plan...

I suppose I'm just frustrated that the PIP process is so linear, so fact-based tick-box, and that there's no weight given to the additional adaptations all of us have to make every day, to keep ourselves, and others safe. There's also the 'fluctuating condition' element that is common to BI survivors, I might be able to make a cup of tea on Monday morning, but on Tuesday, I might forget to boil the kettle, and then have a tantrum about having to use the microwave, because I can't afford to waste the tea-bag. I know it's not exactly life-or-death, BUT if the Universal Credit computer-system 'selects' a job for me to apply for, and I turn it down, because it's too far away, or too many hours for me to do safely, my UC 'could' be 'sanctioned.' The systems aren't fit-for-purpose, I know I'm no longer fit for 'any/all' work, and, if I'm compelled to apply for unsuitable work, there's a risk I could place myself, or others at risk of harm. I can see that, but the systems can't, I genuinely don't have a full day's work in me any more, but, based on a half hour face-to-face with a dodgy nurse, I'm 'fully fit.'

I'm bleating, I know, it could be worse, I'm 'lucky' etc, I'm just absolutely wrung-out.

[Pip70 in reply to Gaia_rising]

I am waiting for the result of my latest pip assess the assessor implied that I might get the enhanced rate but who knows... Like u I consider myself fairly lucky my hubby reminds me when I have bad days that I could be worse off but it doesn't help does it?!? Keep smiling and don't let the buggars get you down! 😀

[Gaia_rising in reply to Pip70]

Oh, "It could be worse!", we KNOW it could be worse, I think I deserve an Oscar for all the times I smiled-and-nodded at my old work receptionist, when she'd tell me how lucky I was, and how much I reminded her of her mother, who had a stroke in her 70s...

My ex, for reasons of his own, went around telling everybody I was 'his miracle', and 'his warrior woman', I wasn't really 'his' anything for quite a while before the haemorrhage, and his traumatised-weird behaviour after my near-miss was the final nail in the coffin.

I know-now that I mis-managed myself, but nobody else seemed inclined to make any adaptations, so I tried to bumble through on my own. (That's another strand to it, I originally applied for PIP in December 2015, the regulatory 9 months after the event, BECAUSE I was worried that functional lapses could present risk of harm if I continued working full time. Claim not-awarded. *bit of info redacted due to confidentiality* I had functional lapses, and now I'm unemployed, I have a HUGE I-TOLD-YOU-SO chip on my shoulder.) There isn't a cohesive support pathway, I've fallen through so many gaps because I look relatively human, and can string a sentence together in the morning. (Try talking to me after about 4pm, you'd get more sense out of a bowl of mince.)

I've relayed my concerns to my MP, and anywhere-else-that-will-listen, the whole guilty-until-proven-innocent aspect of PIP is making me even more unwell than I was to start with, there is still fight in me, just not so much as 'before'. I will keep fighting, and I will tear DWP and ATOS a new excretory orifice when I eventually get my Tribunal. The most ironic thing of all is that my old job involved a lot of risk assessment and care-planning, I did every chuff else's paperwork, and didn't put enough thought into my own. Having this 'time off to reflect' means that the Tribunal will have some incredibly eloquent, legal-safe-evidenced paperwork from my end, and a load of stuff that looks like it was put together by a bunch of drunken monkeys from 'the other side.'

[Kirk5w7]

Hi ill reply soon on the bus atm and about to get off

Janet xx

[sealiphone]

Well this is my job, helping appellants and I can't think of anything positive to say. Most of my clients fall into 2 main groups mental health and TBI and both are wary of making it known they're disabled as the stigma has become so prevalent following the way the press have taken up the scrounger narrative.

I can't say with any authority but the DWP seem to have significantly changed their working practice, the approach now seem to be look how you can refuse a claim rather than ensure entitlement is paid.

The obvious problem for a claimant with a TBI, is the medical assessor is not going to have enough knowledge of brain injury. My advice is if you can find language that can give an insight it may help.

Obviously you need to give an insight to the truth and this may mean you use descriptions, which you may normally avoid because it feels like you're being too extreme. Often that's the only way a 'normal' person can begin to understand also go against the grain and tell the truth about how disabled you are rather than the normal brave face.

It's essential that you get help to fill in the PIP form, as the questions are very unclear with regard to the regulations.

The best evidence to have is a Neuropsychologist's test report, although whether it'll be understood is doubtful.

[Gaia_rising in reply to sealiphone]

Thank you. In respect of the PIP, "It's all done bar the shouting.", I'm awaiting a Tribunal date, having filled in the application, MR, and Tribunal request myself, because I wasn't allocated a Welfare Rights Advocate until after I'd submitted the Tribunal request.

I understand what you're saying about clear and appropriate terminology, and also what you're saying about "Telling it as it is.", nobody wants to tell a complete stranger that they sometimes have to leave shops because they're on the verge of punching the person in front of them, who 'smells funny.' I know that the guidance is to describe 'worst case scenario', but I also know that the system is set up to disprove noted medical evidence with anecdotal observation from the assessment. My difficulties with face-to-face interaction run through my medical notes like the letters in a stick of rock, but the 'assessor' noted that I opened the door, and invited her in, if they re-assess me, I might try conducting the interview by shouting through the letter-box, the assessor had too much perfume on, and I had a two-day headache. (Yes, I'm being facetious, if I don't try to make light of it, this reactive depression will REALLY take hold of me, and I don't want to go 'there.')

The questions aren't so much 'unclear' as deliberately skewed towards the physical aspects of the descriptors, with no weight given to the fact that I expend more cognitive and emotional energy than a fully-able person would do to complete the activity, hence the brain fog hitting me every afternoon. It's hardly reasonable for the assessors to take that one 'snapshot' of me, on best-behaviour, under test-conditions as an indicator of my functionality at all times. (I was battling an urge all the way through the assessment, to shout "Did the NHS sack you because you're so fat?" at the assessor, if I didn't over-process all of my initial impulses, I'd have been arrested or sectioned by now, that 'catching' and 'checking' of my first impulse is exhausting, being me is like babysitting a hyperactive toddler, I'm AWFUL.)

I'm rambling, I was just venting about the systems being vile, and the fact that a lot of us absorb, normalise, and minimise side-effects that would have un-injured people phoning an ambulance.

[Kirk5w7]

Hi again Gaia,

I’m on the train to Euston now, my daughter has an assessment centr for the Met police tomorrow and she has flown in from Berlin, she applied for this job before going out to Berlin it’s taken 9 months for this to happen, I’m “popping” down to London to take her her original, full birth certificate without which she can’t sit the assessment. Just as well I can do this now, a month ago it wouldn’t have happened.

Any way, I digress, you mirror all my thoughts and feelings I’m just “ lucky” I’m now retired and don’t have to deal with these agencies any more. It will only arise again as I become more infirm with age.

I know I am lucky but it doesn’t feel like that at all.

I look back to how I was before the bi and compare it to now, it’s that comparison!

I remember saying in rehab well, if this is as bad as it gets I can cope with this. But I wasn’t living normally in the rehab unit and it did get worse and I’m still fighting to get more like the old me.

I paid for vision therapy that confirmed my sight problems but have taught me how to cope, and improved my balance on the way.

Acupuncture and reflexology, which I still have monthly, joined all the dots back up.

And now with the pregabalin prescribed by my rehab consultant, who I had to push to be referred back to, it is still early days, just one month in , but my pressure headaches are non-existent now, none since November and they used to occur every few weeks and wipe me out for days.

My family can’t believe the change, I still do all those silly things you mentioned and have to be in bed by 10pm, sometimes napping during the day too.

It’s those issues you hit on a daily basis that people don’t understand that prevent you from functioning normally, like the fact that maybe you can do it Monday, but it’s just not possible on Tuesday.

My worst problem I deal with daily is stress incontinence, but it’s more than that, I have to visit the toilet every 2 hours or I wet myself. I need to drink more I know but if I do I would need the toilet every hour. Fine if I’m at home, but out and about the stress of knowing just where the toilets are or having to wear incontinence underwear is immense! One for the GP I know but I wanted to tackle the other issues first, but, now is the time I feel.

So, never apologise for venting, it’s good to know others are dealing with the same problems, and as they say” it’s good to share”

Hope you arent so “wrung out” now.

Love

Janet x

[Gaia_rising in reply to Kirk5w7]

Letting a little bit of the pressure off, in a safe environment did help me, Janet.

I'm really struggling to reconcile what I 'was' with what I 'can' do now. All of the additional-to-or-different-from adaptations I have to make every day have a huge impact on both my physical and cognitive functioning. Even doing relatively little, now, I'm beyond useless by early evening. I'm not telling various government agencies that I'll never work again, or that I expect to be 'kept' by the state for the rest of my life, I'm applying for a benefit that's supposed to provide assistance for people with disabilities to re-engage. I imagine I am being a little over-cautious, BUT trying to remain working full-time caused a risk of significant harm to a child, and I'm not willing to take that chance again, I'm high-functioning, but only for part of the day. If I'm compelled into minimum-wage work by the UC system, *I* would be the negligent party for any errors or omissions caused by cognitive lapses. (That's a crap crystal ball, isn't it? Knowing that you're at increased risk of causing harm to self or others, why couldn't it show me the lottery numbers?)

Right, moving forwards, because I don't do backwards. I've asked my GP to re-refer me to Neuro-Psychology for a full cognitive assessment, so I know where I stand, instead of making-it-up-as-I-go-along. I have a GP appointment next week to be signed off sick with all this depression/anxiety stuff that's going on, that triggers DWP into the Work Capability Assessment route, and also gives me a little bit more head-space to focus on what I need to present at my PIP tribunal, when I eventually get the date... Messy, messy systems, but I'm trying to work through them the best I can.

All the best to your daughter, and I'm glad you've managed to get your side-symptoms under something approaching control. (I have a small/sensitive bladder, so, yes, the majority of the 'steps' on my phone-pedometer are trips to the smallest room.)

[Elenor3]

I feel tour pain. It's so so so so so unfair on you. The PIP form needs to have a whole section added, or at least a question which says......please tell us about your hidden disabilities. Tax forms have extra sheets you can add for special circumstances, so why not PIP forms? It's so unfair, the more you've battled on doing your best, the less help you get. I understand. You don't want to make demands on services so you do your best to bumble through. The more you keep struggling on the more they tell you you you must be fine. It's a total nonsense. Is the process encouraging people to exaggerate their symptoms and go to doctors umnecessarily and do all sorts of thing s that stretch the services involved. When there's no need to do that if a sensible person does an assessment and listens to what you's say. The sensible person needs to understand brain is jury. Why don't they send all the pip Assessors on a full day training course run by Headway? Mandatory training. I've had to do mandatory training in the past. I feel so sorry for you , it's not fair. How do you explains to someone what sensory issues are like ? They can't imagine it. My husband is very nice but he doesn't understand about certain smells or wall paper or light or noise or fabric or anything really. He is very nice, and if I run out of a shop because of the light, he doesn't mind. But he can't tell in the first place that the light will make me illl. If your husband doesn't know, how can the PIP assessor N know ? Good luck with you're tribuneral. x

[Gaia_rising in reply to Elenor3]

Thanks, Elenor3

These systems are HORRIBLE, it's the assumption that because I could 'x' on one day, I'd be able to do it every day that are really annoying me. My fatigue is much worse now than it was at the original assessment, in 2016, and I 'scored' points on that one, this one has been zero-points not-awarded, and I'm very evidently worse now than I was at the first assessment.

I know I'm not making anything up, or exaggerating how difficult things are, two issues there, the 'guilty until proven innocent' 'scroungers' element, and the fact that I've been completely honest from the start, I ticked 'with aids or assistance' for most of the descriptors, and some bloke, in an office somewhere, then types "You said you had difficulties with... I have decided that you can..." THAT will be part of the reason that all current claims are being reviewed, none of the decisions have been particularly evidence-based, they're all assumption/opinion. I know I'm ranting, but the 'medically trained' person writes the report, and then a non-medically-trained 'decision maker' 'decides' what I can and can't do. It's a nonsense.

I'll just leave it here, that if the decision not-to-award is upheld at Tribunal, if/when I eventually get one, I have stated that my brain injuries present a significant risk of harm to self or others if I am compelled into working full-time. I really hope I don't hurt anyone else, that would break me.

[sealiphone in reply to Gaia_rising]

A important point to note, is that the Tribunal are considering if the original decision is correct, this means changes in symptoms after that date are not normally relevant to their decision.

This can cause problems regarding should someone make a new claim or not, I understand you've spoken to an adviser did they not address this complicated issue?

Certainly someone in your situation requires specialist advice on this matter before making any new claim.

[Gaia_rising in reply to sealiphone]

I didn't make myself clear. I originally applied for PIP in 2016, following the haemorrhage in 2015. That application was declined, I took it to MR, but not Tribunal. My issues became significantly worse, following my 2016 surgery, I waited the requisite 9 months with worsened condition before re-applying.

I am working within the timescales and parameters set by the systems.

This is an on-going claim, initiated March 2017, 'assessed' June 2017, declined July, MR August, declined, Tribunal requested September, pack of papers returned to me November, NFA to date.

The initial and subsequent decisions were incorrect, my risk assessment of my issues, in 2016, that there was the potential for my disability to place myself, or others at risk of harm proved correct.

[Gaia_rising in reply to sealiphone]

Additional, the 'adviser' allocated to me has never met me. Before the protracted fandango of me 'suggesting' he email me the TPA forms, rather than repeatedly failing to bring them to me, as he had stated he would, he'd repeatedly asserted "You have a strong case! I can win this for you!" I have no faith whatsoever in his competence o represent me. How in the hell can he offer 'you have a strong case' before he'd seen any of the paperwork? Yes, I'm aggressive, a frontal lobe injury will do that to a person.

[sealiphone in reply to Gaia_rising]

Yes you're situation is different that I understood, so ignore what I said.

I am surprised by the adviser's confidence, it'd have to be an absolute slam dunk, for me to give that opinion even after face to face advice, perhaps he's much better than myself?

[Gaia_rising in reply to sealiphone]

You see now why I lack confidence in him? I have the 'bundle of papers', and have annotated all of the errors, omissions, and assumptions. I have an 'adviser' who stated that he would write my impact statement 'for' me, before he'd seen any of the paperwork. He doesn't live this half-life, I do. I know you're stretched beyond capacity as advisers, but the bluff and bluster I'm feeling from this one does not inspire confidence.

I'm not biting you, it's the system that isn't fit for purpose.

[sealiphone in reply to Gaia_rising]

I'm used to bites and that was tame(I didn't even notice it!), in fact any adviser has to be good at saying no I won't represent you.

This may seem harsh but with limited resources the first thing you have to do is assess if the DWP decision is correct and what are the chances of success.

The other truth is that sometimes I'll take a case with very low chance of success, if a successful outcome will effect claimants in general.

Confession time you can blame me for the ESA1 form, following an Upper Tribunal decision, as it highlighted a fundamental flaw in the pre ESA claim process.

[Gaia_rising in reply to sealiphone]

I'm doing this as much for 'claimants in general' as I am for myself, the systems are very linear, and very focused-on-physical, they also give very little consideration to the fluctuating symptoms that a lot of us are left with. There 'is' a 'sometimes' box on the application forms, as I recall, but, when you tick that one, filling in the form honestly (in my personal experience), the decision maker will take that as 'always', no matter how much evidence you provide that you sometimes-can't. (Showed my assessor multiple cuts/burns/bruises from household incidents, and that's WITH my adaptations and such, I know they're fairly minor injuries, but, if I didn't manage my functional hours the way I do, there is absolute probability of more severe injuries.)

The systems are very time-bound towards the claimant, and less-so towards DWP, it's not pleasant to know you're on a deadline, and some people will give up at that point. (I only managed to meet the timescales this time because I'd already date-order-indexed my medical file, which is about an inch and a half thick, for Workplace Well-being, in November 2016.) You know yourself that advocates and advisers are stretched beyond capacity, I know that my paperwork and files were legal-safe evidenced, correctly formatted, and legible, but, some claimants, unsupported, won't know how best to articulate their responses, and the application will be declined.

I'm resilient and resourceful, up to a point, I won't be coy, when I'm on form, I'm phenomenal, but I'm no longer phenomenal full-time. I can 'read for meaning' and 'articulate in audience appropriate terminology' during the early part of the day, but, once the afternoon catches up with me, you'd get more sense out of a bowl of mince. (Yes, I am conscious that I'm typing this at 3.30am.) Some claimants won't have that ability, or the resourcefulness to check verifiable internet resources for guidance on what the questions really mean. (Side-snark, 'what the questions really mean this month', because once enough people evidence that they 'can' mount and dismount the lavatory by holding onto other fixtures and fitting, the powers-that-be cease to see that as an 'adaptation', and just see the 'can.' No, I didn't take photographs of the bruising that led me to adapt my technique, NOBODY wants to see that, and have you ever tried to take a photograph of your own posterior?)

The 'paper' nature of the forms will dissuade some people, it took me over 10 days to fill the whole thing in, a combination of photo-sensitivity, Arthritis, and Raynaud's in me means that writing with a black pen, on white paper is uncomfortable on many levels. People with more physical infirmities than me will struggle even more to hit the time-line for returning the forms, and I know, from previous working experience, that there are a significant number of adults in the UK without the functional literacy skills to fill in the forms 'to an acceptable standard.'

I haven't looked up the statistics on the number of initial applications declined recently. I KNOW that the initial 'computer says no' is a strategy to wheedle out claimants who 'could' work, or are in a financial situation that would allow them to manage without PIP. None of us apply for PIP for fun, or because we're bored on a rainy Saturday afternoon, we apply for PIP because we need it. That's your first wave of suicides and other avoidable deaths, the people who see the 'no', and either can't, or can't-see-the-point in the Mandatory Reconsideration process.

Mandatory Reconsideration 'Goodness' me, what sort of a system is acknowledged to be so woefully inadequate at the initial assessment stage that it has a MANDATORY reconsideration phase built-in? The recent decision to recall/review seems to have been triggered by the 'overwhelming psychological distress' element within the 'moving around' section being, erm, 'overlooked', what on earth is it going to cost to have the DWP computer-monkeys go back and tick the right box, now it's been pointed out that the original action was discriminatory? Some people won't bother chasing the MR, because they can manage, with support from family, friends, or other unofficial carers. (Don't get me started on the insidious way that formal care/support services have been gradually eroded/outsourced, I'll never get off my soap-box.) Some people won't have the emotional or physical energy to 'do it all again', I'll admit that even I was close to banging my head on the wall, and frisbee-ing my laptop through the window at having to repeat all the 'babysitting' behaviours I have to employ to remain safe.

Again, the next step is a 'computer says no', which will filter out yet more applicants, who just can't summon the energy to explain it all again, for a fourth time. (I'm counting application, 'assessment', MR 'corrections', and Tribunal request as four stages.) Re-formulating your original data into a new set of forms isn't fun, for a lot of us, that constant and repeated reflection on what we can't-do-any-more is emotionally harmful, I'm supposed to have my positive Mary Poppins head on for work-searching... you can imagine how that's going, with the cognitive dissonance of having one pile of paperwork giving excruciating detail of what I can't do, and a CV that now has a 'gap' approaching a year in it. That's just me. Aside from the stomach-dropping realisation that you have to write it all again to be granted a Tribunal, it becomes much more 'official' at this stage. 'Her Majesty's Courts and Tribunal Service' will be enough to deter some people, the word 'court', and the official-brown-envelopes might well lead to fear, especially in people who have other brown envelopes stacking-up-unopened from County Courts.

Unless you take the 'cancellation' option, of being available at two week's notice (which is complicated if you DO manage to find an advocate, you might be available, but your advocate/adviser might not be...) there's no timescale. This 'limbo' period, of waiting for my date, is making me really unwell, I'm stuck in a system I have no control over, just 'waiting' for the Tribunal date to come in the post. Again, being cynical, 'some' people, the ones you read about in the Tabloids, who claim disability benefits, and moonlight as pole-dancers are supposed to trip themselves up at this stage. Oh, hang on, wait, no they won't, because they don't exist, nobody who 'could' work would subject themselves to the emotional torture of constantly rolling the can/can't around their head for months on end.

The 'bundle of papers' will put some people off, especially if they get the RIDICULOUSLY worded letter from DWP that I had at the front of mine, requesting the panel not to go ahead with the Tribunal request. Another "What's the point?" hurdle, there, I don't know if it's common practice, or if I just had a particularly dense 'decision maker'. I'm having a 'save the rain forest' twitch, at DWP sending me back copies of MY OWN paperwork, 300+ pages, most of which was my medical notes and data. My bits were legible, then there's the "Nothing wrong with her!" assumptions, based on me not shouting at the assessor for half an hour (I did cry quite a bit, I did swear at her, and I did raise my voice once, oops, she missed that bit in her notes...) Right at the back of the 'bundle', DWP are suggesting amendments to their decisions, I won't list them all, but they cross-over categories, and are only applied to one category each. 'Aids or assistance for preparing food' crosses over into managing medication, and managing nutrition, it is acknowledged that my functional memory and balance and co-ordination issues inhibit my ability in the kitchen. Which is where my medication is, and where I eat. 'Aids or assistance for washing/bathing' crosses over into dressing and toileting. The absolute killer is that they've noted 'Likely to require prompting or encouragement for engaging with others the majority of the time' find me an aspect of life that doesn't impact on, I'll sit here and wait.

I'm venting again, no-action-required, I am sick of, and sickened by these processes, this guilty-until-proven-innocent system is vile, they might as well have typed "As she is able to run a bath, it is reasonable to assume that she could run a marathon.", for all the sense their assumptions and assertions make in real terms. I have shared my concerns about the PIP process with Laura PIdcock MP, who was taking them to a Parliamentary Committee last week. I have shared my concerns about PIP and UC with my local MP, who has made attempts to have the relevant Government ministers view them. (We received a stock-response of 'every case is assessed individually' etc, but it will be on file that the concerns were raised.)

'This', this navigating through complex, intermeshed-but-independent systems and processes was what I did 'before'. What I also did 'before' was to advocate for vulnerable individuals or families, to access the rapidly-dwindling support or representation available, to closest-fit their needs. I was the voice for the vulnerable, and I'm not going to shut up now.

[Elenor3]

I hope it all goes well and I hope you get your date soon. I'm so sorry you're going through thus, like life isn't hard enough already. I'm thinking of you and wishing you all the very best possible luck with it. x

[sealiphone]

Everything Gaia_rising is fundamentally correct but the shocking thing is that disability groups were involved in the working groups on PIP assessment criteria and form design.

Seems to me they were fooled by all the propaganda of good intentions.

The government said the DLA forms were too complicated and wanted a form that claimants would find easier to complete, as I said this was supported by some disability groups.

It was obvious to any experienced adviser that little boxes to be squeezed into was not a full picture of someone's life unlike DLA criteria.

None of this helps anyone here but I needed to vent!!

[Gaia_rising in reply to sealiphone]

That was one of the irksome things I forgot to cover in my previous rants, the space where you have to hand-write a concise statement of how your disability impacts on your ability to complete the descriptor-activity is roughly half a page. I don't see how anyone could cover 'everything' in that space, so we fall into the "Well, you didn't mention that on your application form." quandary at the 'assessment' stage. (Snarky head is very loudly pointing out that the form doesn't ask if you can 'stand on either leg', or how far you can bend forwards from the waist towards your toes...)

I had never seen the DLA forms, because I didn't become disabled until after the introduction of PIP, so I don't know how different they were, but I did fill in observational data for a lot of children with diagnosed ADHD, genuinely can't remember what form that was, for which benefit, because the systems kept changing. It's that 'best intentions' line that the powers-that-be keep throwing out that's really jarring with me, it puts me in mind of the Pink Floyd video, with the meat-grinder, or, my personal analogy, that the systems are trying to bang a hamster through the star-shaped hole on the Fisher Price shape-sorter, and hope it still runs.

I accept that, historically, systems may have been vulnerable to abuse, but, realistically, I don't think we've had the fabled 'a bit of a bad back' spurious claimants for at least a decade. (In my previous profession, working with some very 'hard to reach' families, I'd probably have to go back to about 2007 to think of claimants who were obviously gaming the system.) I've had acquaintances, and family members throw me the "How can't you access benefits, when there are all those scroungers out there?" platitude, so the myth still perpetuates, even though the reality is quite different. Yes, Jamie Oliver, I do have a 'f***ing massive telly', the ex left it here, I rarely turn the bloody thing on though. (Going off-topic, but I'm not living a champagne and caviar existence on Universal Credit, I'm juggling pennies, MASSIVE panic last week when my bank account was something like £3 short to cover my TV licence direct debit, and I was anticipating a £25 bounce-charge next month.)

Again, I'm just venting. In my previous life, I could get where water couldn't in terms of accessing support for vulnerable individuals or families, even in the face of cuts and closures to established services, I could generally either articulate reports or referrals just-so for the required outcome, or find another similar service, where 'option A' was at capacity, and a wait would present risk of deterioration of circumstances. Crashing down to earth, I've probably guided thousands of individuals and families through some very complex systems over the course of my career, now I'm the one 'stuck' in the system. The 'systems', as much as PIP and UC are intended to 'streamline' processes, there's a very clear left-hand-doesn't-know-what-right-hand-is-doing issue, even WITHIN DWP, my work-coach has no idea how PIP works, and the vast majority of the support/'vulnerable customers' departments I've been in contact with have no idea how either one works. "One system, to bring together multiple benefits" sounds great on paper, but even the 'helplines' within UC don't share data with each other, it's a mess.

No answers, only more questions, about these intentionally obstructive systems. I take your point, sealiphone about the appropriate agencies being 'consulted' about the roll-overs to PIP and UC, we've all been sold a pig in a poke, by higher-level-managers who have never experienced the fluctuating nature of living with brain injuries. Now, I suppose I'd better come off here, and do my mandatory hour of work-search on the HORRIBLE government site, not-disabled-enough to tick the PIP box yet, I'll see if there are any vacancies for flamingoes that can reach their top pockets.