#+ what my surgeon told me and what came on my informed consent paperwork re: recovery expectations | Explore Tumblr Posts and Blogs

gaiatheorist · 6 years

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Communication.

Welcome to the UK in November 2017. On December 6th, I’ll take a £5 return bus-trip to the city centre, for an ‘open day’ for vacancies within the NHS, specifically for people with disabilities. I’d say I’m being over-analytical in assuming that the event is to back-fill the low-end vacancies that will be left as overseas workers return to their countries of origin in the midst of this EU-uncertainty, but that’s what it is. I’ll ‘lose’ a chunk of a day I should spend seeking suitable employment, explaining the things I can’t-do-now. I can do a lot of things, just not for a whole day any more, and the NHS pay-rates are awful, for the menial work that will be on offer. Yes, somebody needs to change the sheets, and push the tea-trolley, but I have brain injuries that make fluorescent lights unbearable, and only one of my hands works properly. I can’t even apply for the higher-paid audio typing roles, because my accuracy wouldn’t pass the speed-test, I have to correct so many red-underlines these days that my previously-phenomenal typing speed is now only average.

The irony, that I’ll have to explain my deficits to the NHS, who are the one agency that already hold that information, and just choose not to share it. Of course the staff at the recruitment day won’t have access to my medical records, my work-coach patiently explained ‘neurological condition’ to the person on the other end of the phone several times, and had to spell my name out three times. She was red in the face, and very angry when she had to repeat “No, absolutely not domestic or porterage service!” Box-ticking and back-filling. I’ll comb my hair, and smile politely, and explain what I can do, to ‘pass’ the sanctions-bar, there’s a possibility that I’ll be sanctioned anyway, for being ‘unsuitable’ for the roles that will be on offer. I bet the system is fast enough to take the ‘sanction’ from my December payment. Merry Christmas, DWP, I’m already trying to decide whether I can afford the £3 Morrisons ‘wonky’ veg box in my next grocery delivery, or whether I should take it out, and just buy the potatoes, carrots, and onions.

That’ll be a new communication, phoning various companies to say I’ve had to cancel my direct debits because I won’t have enough money to cover them, the contents insurance is extortionate at £26 per month, but there’s a chance my water cylinder might fall through the ceiling due to years of leaking. Oh, and the side-line that, as more people in the village are rolled onto Universal Credit, there will be an increase in burglaries.

This all started with the lack of communication after the brain haemorrhage that ‘luckily’ didn’t kill me. Pretty much everything I know about the surgery, and the side-effects came from the internet, the hospital told me nothing. Absolutely nothing. Oh, wait, I’m exaggerating, the OT who assessed me on the ward, 10 days after traumatic-invasive brain surgery told me “Most people can go back to work within about 8-12 weeks.”, that was it, no questions about what I did for a living, no information on the crippling fatigue, or the host of physical and neurological side-effects of major brain surgery. She gave me a booklet, ‘Memory Strategies for Patients and Carers.’, that was it.

I went back to work, initially mornings-only, after six weeks, because I couldn’t stand to think of other, less competent colleagues screwing up my caseload. I also went back quickly to get away from the ex and his parents, with their suffocating way of caring. I didn’t want to be ‘cared for’ by the in-laws dropping in unannounced several times a week, and tutting because I’d been in the house all day, and not picked up the ever-increasing pile of socks the ex insisted on leaving at the side of the sofa. I went back to full-time hours as much to spite the ex as because I was working from home in the afternoons anyway. He would have been far happier with me staying part-time, and being dependent on him, spending all afternoon cooking a dinner that he’d look at, and say “I’m sorry, love, I can’t eat that, is there anything else?” There wasn’t any communication from the hospital, there’s a line in one report from the Consultant Neuro-surgeon. “Having tolerated mornings, she has returned to work full-time as a teacher.” I said I worked in a school, not that I was a teacher.

I wasn’t coping. I was trying to ‘get better’, and it was exhausting me, trying to prove that I could do everything I did before. Being me, I thought that was my fault, that I was weak, and just not trying hard enough, the rehab clinic discharged me after two appointments, because I’d already gone back to work, and wasn’t amenable to the smiley-nurse’s suggestions that I colour code timetables of household chores for different family members. My fault there, because I knew that the ex would ‘in a minute’ any task I set him, and not-do it, and that the kid would take so long, and ask so many questions, that I’d be as well doing any task I’d set him myself. Should there have been a flag-of-concern, back to the hospital, or out to Occupational Health? Probably. Was there? No, because all of these various departments work in isolation.

My fault. I mis-managed myself horrendously in that initial denial/anger phase, superficially ‘accepting’ that a lot of things were now much more difficult, but doing them anyway, to stop other people seeing me as vulnerable, or less-than. I’m very much less-than, I’m a shade of what I was, but I didn’t want to acknowledge the enfeeblement, so I tried to work around, or through it. My resilience and tenacity did me no favours, I projected-coping, and that’s what people saw. I burned myself out, trying not to ‘let’ other people do things ‘for’ me.

My first assessment under the PIP disability benefit programme suggested that I ‘could’ complete all of the arbitrary descriptor-activities, some with ‘aids or assistance’. I contested, and then the communication went completely out of the window, because I had my second round of brain surgery, so didn’t appeal the Mandatory Reconsideration decision that I was fully fit for work. The additional paperwork that I’ve seen now, from the decision-maker’s report details some of the nature of my job. Should there have been a flag-of-concern within DWP, about the potential risks of continuing in that line of work, full-time, with brain injuries? Absolutely. Was there? Guess.

Communication-wise, the next mistake was mine. I’d kicked out the ex, so I could concentrate on supporting the kid through his A-levels, without having to expend emotional energy on a petulant man-baby. There had been some changes at work, and I threw myself back into proving-myself again, I was, at the age of 39, going to turn my life around. Didn’t quite go according to plan, and, when I returned to work after the second surgery, some people genuinely did ask me if the procedure had been cancelled, because I was full-time straight away. I knuckled down, and got on with things, not wanting to complain about the pain from the noise, or the lights, because nobody likes a moaner. I did ask my manager if there were any less-noisy offices available, he said not, so I stopped asking.

(There’s a side-thread I’m not including, but, again, known-information was not shared between various parties, on multiple occasions.)

The hospital didn’t even bother re-calling me after my 6-month post surgery brain scan, the ‘outcome’ is 3 lines of text on my GP’s computer screen. ‘Good occlusion, recall September 2018.’ My optician ‘wrote a letter’ for me to present to my GP, to ask for an urgent referral to neuro-ophthalmology. The GP shook his head, and said he’d send the ‘letter’ to general ophthalmology, then took all three copies of the triplicate-carbon form. (One of the ‘poor quality original’ stamps on the latest batch of PIP-paperwork is because I’d taken a photograph of the form on my phone, and printed it out at home, this PIP-process is costing me a fortune in printing information that already exists, because PIP is utterly divorced from the NHS,) I tried to send the photographed form to my neuro-consultant via email. The woman in Patient Liaison replied that she didn’t have access to his email address, and I blew up in anger at her, because that’s bullshit, even if I do have brain damage. (It’ll be firstname,[email protected] I have brain injuries, I’m not a moron.) I emailed the form to his secretary, and found myself with an appointment at the city hospital, to have the same test the optician had already done, and the same test my GP was referring me to the town hospital for. (Nothing abnormal detected, because that’s not the test the optician had asked for, there’s some obscure funding reason why he can’t raise the referral himself, and it has to go through neuro, and I appear to be speaking Chinese, all the while, my eyes are becoming steadily less reliable.)

Communication. ‘Workplace Well-being’, formerly ‘Occupational Health’, despite being part of the NHS, and despite me giving my informed, written consent for any-direction data-sharing, didn’t have access to my NHS patient files. (WHY?) I ended up photocopying the whole bundle at home again. WW requested a formal functional assessment of my cognitive abilities in October 2016. I still haven’t had it. I’ve had to chase it multiple times myself, and recently found out that my GP saying he’d make the re-referral I was asking for on 13/10/17 was delayed. He didn’t send it until 10/11/17, and then it was m chasing the surgery to fax a copy to neuro-psych, because the NHS computer systems are so outdated that they won’t send identifiable personal information via email.

The bit of DWP that deals with PIP doesn’t communicate with the NHS, or the bit of DWP that deals with Universal Credit. (The bit of DWP that deals with PIP does, however, send letters to the tribunal panel, copied to the applicant, stating that the tribunal should not consider the case. Sneaky semantics there, DWP, some people will see that as “Don’t even bother.”, I’m not ‘some people.’) That’s going to be the next communication issue, articulating to an independent panel that some detached computer-monkey somewhere within DWP copy-pasting “You said you had difficulties with... I have decided that you can...” is in no way reflective of the difficulties I do have on a daily basis, and that the potential for the UC systems to compel me into unsuitable any/all employment places myself, or others at risk of harm, due to my disability. I have 25 pages of that ready to go, the ‘issue’, the ‘impact’ of that issue, and the ‘adaptations’ I have to make to work around it. Very clear, very coherent, and evidence-based, rather than the opinion-based statements DWP have pulled out of the atrocious nurse-report from my last ‘assessment.’

The PIP system is awful, it’s not in the least bit fit-for-purpose, the ‘assessment’ is heavily skewed towards physical activities, and there’s no pain-scoring involved. If I did say “That hurts.” every time an action caused me discomfort, I’d lose my voice, and, over a period of years of having other people either panic-flap, or roll their eyes when I did disclose discomfort, I just stopped mentioning it. (While the shrieky one blethered on for months about her lump, and being scared to go for her blood-test results without her Mum.) I can raise both arms above my head, it hurts my right shoulder. I can ‘stand on either leg’, but I feel incredibly unsteady doing so. I can read some of the letters on a chart a defector nurse is holding 2m away, with my glasses on, but it was physically uncomfortable to focus, because she’d decided to stand in the window, and the light was behind her. The way she recorded the results was appalling, it wouldn’t have been very hard for the ‘decision maker’ to cherry-pick the ‘can’ conclusions, and ignore the pile of medical evidence.

Now, I’m waiting for a date for the tribunal, to communicate that the data held on me across various agencies and departments is not being shared appropriately, that I desperately need to work, because sitting at home being unproductive is a waste of me, but that I can’t commit to working full-time, due to my disability. I need the ‘buffer’ of the PIP payments because in-some-ways-brilliant as I am, I’ve been out of work for so long, I’m only likely to be considered for low-end, entry-level positions. The WW doctor’s report states that I ‘should be able to return to work, after counselling, and with a phased and supported re-integration.’ I’ve been having counselling for six months now, the general focus of the sessions is how unwell the PIP-process is making me.

What the PIP and UC systems are doing to me is making me consider throwing myself into any sort of job that would pay my bills. Without the functional assessment, that’s exceptionally risky, because I’d effectively be declaring myself ‘fully fit’, and I know that I’m not. The ‘failure to disclose pre-existing’ isn’t the way I work, it’s dishonest, and ultimately presents a risk of harm. I can’t/won’t do that. Despite all of my careful juggling, very soon, my outgoings will be higher than my income, and I’ll be on the Helter-Skelter of bank charges for bounced payments. I’m spending more time ruminating on the PIP tribunal than I am on seeking employment, and I’m spending even more time wondering what else I can cut back on, so I can still feed the kid when he’s back with me for his Christmas break.

Shouting into the void, I know, this is me practicing my case for PIP, and hoping that the way I communicate the massive holes in what should be a safety net comes across clearly. There’s the potential that the way I cross-reference and communicate will only make the panel see my hyper-functional side, and dismiss the case anyway, when I’m on-form, I AM phenomenal, I just can’t do that all of the time any more.

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