Headway

Returning to work, did it work?

The research on successfully returning to work after TBI doesn't tell us a great deal beyond returning to your old job and the degree of injury are two important factors.

Headway has fantastic information concerning returning to work.

headway.org.uk/about-brain-...

I wonder have you succeeded, if so what difficulties did you experience in the workplace and did you use the Headway guidance.

I ask because I offered to have a chat with a friend's friend who was returning to work but they sent a message saying they had worked there for 13 years and they were an Equal opportunity employer so he was confident it would be fine.

Now 6 months later I've just been told it was a disaster, off with stress and eventually resigned. I also understand his "friends" had been the worst part taking against him causing depression and hence off with stress.

Of course that appears scary but I also know of some great success stories, did it work for you?

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Did it work for me? Not really. Before worked 50-60 hours per week in my own accounting and tax business. After worked 4 hours per day MTW and F. Totally exhausted and stressed out, even with that very limited schedule. Finally was able to sell my business and retire. Since I lost 95% of my executive function everything I used to do was almost impossible for me to do. Ironically the doctors had told me I could start back to work the following Monday with no restrictions. Hahahaha I didn't go in until Tuesday and barely lasted an hour. I couldn't remember passwords, how to use the computer, etc.. I was a complete disaster. Over the next about 6 weeks I figured out my new routine and started the process of selling my business.

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3 Neurologists told me I had no symptoms, even though I'd said I was really struggling. So I returned to work at my 1 year check up when I said I'd returned the consultant was shocked telling me at least 12 months, given my job. Of course I told him nobody had mentioned 12 months.

So at that point NOT disabled, however my employer supported me as though I was. Even then I was finding it very difficult, come an assessment from a Neuropsychologist and I was told, disabled and you're going to become ill if you don't stop.

I resigned and found another job, less hours and stress and the employer was fantastic.

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I work with a helmet on my head. Everyone who sees it is so thoughtful. I had my second craniectomy roughly 7 months ago. Never, ever before had I known there was beauty in typing in all caps. Now, I want to tell everyone how "CAPS LOCK" is so good to me! my right hemisphere is without the bone flap and my left hand, arm & foot are so off kilter. Wish internets were accepting of caps lock. No worry! I look forward to cranioplasty on th 20th of this month.. I did jury duty last Tuesday! No one asked about my helmet! I tried to get picked! I wanted to come across smart & with it! I ranted against drunk driving, which probably disqualified me. I got home so late & told sweet wife how disappointed I not picked. And equally disappointed no one asked why I look funny. She poked good fun at me that I was upset people had good manner enough not to make enquiry! I was hopin' to spill my guts, which I gotta stop. I live in US so employer said light duty is only way to keep such wonderful health insurance. I fell into vicious cycle where I try so hard to prove myself, then boss keeps "hoping" for more & more of the same. Hard for them to find good workers here. They find me more reliable at age 43 and a head injury than most twentysomethings. Thanks for the listen seliphone! -Ricky

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sealiphone you seem to know an awful lot, why dont you go away and come back and tell us what its like in the real world!!!

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I wouldn't want most people to know what I do in my leisure time.

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I was convinced I was fine luckily my boss, and GP where wiser than I and started me back on phased return about a month and a half after my injury.

Started at 4hrs a week and over the next 6 months ramped up my hours until I was back to full time, though I have since dropped back to part time. Since I couldn’t cope with working 5 days a week, really.

The main issue for myself is fatigue, never really found a way to solve it really.

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*Pulls up soap-box.* *Wanders off to make tea, comes back, and trips over soap-box.*

I hurtled into the denial-phase, and told myself it was acceptance. I'm sure I was as much of a pain in the proverbial to everyone else as the weird sciatic twinge was for me. The guidance/advice I had about returning to work was virtually non-existent, the OT who assessed me on the ward 10 days after the haemorrhage gave me a vague "Most people can go back to work within 8-12 weeks.", without asking me what I did... The lovely lady at the general rehab clinic triggered my anger, by telling me that the desire to return to work was something she usually saw in men, not women, and then promptly turned me off even more, by suggesting colour-coded rotas for household chores. (I chuffing HATE being pigeon-holed based on the fact that I have three X chromosomes.)

Hindsight is a wonderful thing, I'd had some 'personal' issues bubbling away in the background since forever, and the way the ex tried to control me after the near-miss just made me even more determined to 'get better', to work myself out of the hideously imbalanced relationship. I threw myself back into work, because I needed that focus, to prove myself capable. (Absolute classic Complex PTSD behaviour, but nobody twigged, because I appeared very high-functioning.) It was horrible. It was too bright, too loud, and I struggled tremendously with the sensory overload. I'd asked if I could be moved to another office, but there were none available. I'd explained to my manager that I was applying for PIP (The 2015-16 chapter of the PIP-saga, declined, MR declined, didn't take it to Tribunal.), to make up the difference financially to compensate for me slightly reducing my working hours, to reduce the impact of the fatigue. Some other excrement hit the extractor work-wise, and, when the PIP application was not-awarded, I assumed I'd just have to manage myself better working full-time.

I didn't seek support from Headway. (Well, I did, I managed to co-ordinate literally life-saving support for a student, but I didn't seek any support for myself, because I'd convinced myself I was coping.) Now, the problem with 'sweeping things under the carpet' is that you eventually end up with a massive great big lump under the carpet. I metaphorically tripped over the lump, and landed very, very badly. I'm chasing a thought around my own head here, about whether I 'failed to seek or follow medical advice', there wasn't any to follow, and, never having been in 'that' situation before, I didn't know where I should be 'seeking'. (Yes, I grasp the irony of typing this on a Headway forum, it's right there, at the top, in big letters.)

Technically, I had a 'phased return', but, after the first couple of weeks, once people had realised I wasn't going to eat all of the paper-clips, or shout "Custard!" in the middle of important meetings, my workload was cautiously increased. (No fault implied to colleagues or management, there, a lot of my workload was stuff only I could do properly, and I was hideously protective about farming it out to other people who might cock it up, leading to potential complications further down the line.) Four weeks 'off' altogether after my discharge, then the last week of the Easter break 2015, I was back at my desk mornings-only 7 weeks after the SAH. A note for a 'phased return', which may or may not have mentioned restricted duties, or 'with adaptations.' I wrote my own risk assessment. (You, at the back, stop laughing, it didn't just say "Try not to get kicked in the head.")

I'm a bit vague on dates, my head struggles to 'hold' numbers now, my review with the consultant was cancelled three times, I left hospital mid-March 2015, and didn't actually see the consultant until either the end of May, or the start of June. The ex was being coercive and controlling, insisting I ought to stay part-time, and he'd 'look after' me financially and physically. (The man couldn't find his own socks, as I'm sure I've mentioned from time to time, I was the one babysitting him.) I was 'at' work in the mornings, and working from home in the afternoons, the nature of 'my' cases meant that there was no cut-off point, HR compounded the problem (me, I'm the problem) with a throw-away phrase that enraged me, so I decided I might as well return full-time. (Grade 4 SAH at the end of February, back to work full-time, full-caseload at the start of June, you couldn't make me up if you tried.)

I 'chucked out' the ex at the same time as my second round of surgery, in March 2016. There was some re-structuring at work, which made me uneasy, and even more determined to 'prove myself' and 'secure my place', so I didn't take any time off at all after the second surgery. (Newsflash- This woman is an IDIOT.)

*Bit of information redacted, but that return didn't go according to plan.*

Now, if I had a time machine, and, I'll point out to the entrenched-gender-stereotyping rehab lady that Dr Who is a woman now, there are a couple of points where my case could have been handled better, by myself, and other parties.

The OT on the ward didn't ask me what I did, when she gave me the vague 'most people' guidance, obviously she had no way of knowing that my particular psychological profile would see '8-12 weeks' as a target to beat.

The ex sat, eating crisps, and mucking about on his phone on my discharge-day, rather than doing anything at all to find a medic to sign me out, he then proceeded to whine like a toddler that he was hungry, and bored, and we'd been waiting AGES. (Mate, you've been here a couple of hours, I've been stuck in here for two weeks.) With him banging on about needing to put more money on the parking meter, and one of the other patients on the ward appearing to have BATHED in perfume, I essentially signed myself out without speaking to a medic, who might have asked me what I did for a living, and offered appropriate guidance.

My GP had to ask me what I'd been in hospital for, when I presented for the initial unfit-for-work note. The city hospital hadn't transferred any notes. If I hadn't had the 'security' of a permanent contract, with a decent period of full-paid sickness absence, I might have returned even more quickly than I did, that doesn't bear thinking about in my case, because I know I was an absolute horror for the first few weeks 'out.' (Who am I kidding, I'm a horror all the time, I was just extra-vile in that initial 'adjustment' phase.)

(The ex was 'demanding' during this phase, taking a fortnight off work to 'look after me', and spending it eating toast, and adjusting his trouser-contents on the sofa, he was suffocating me, following me around the house, and prattling on alternately about how he had thought he was going to 'lose' me, and how I was 'his warrior woman'. A- you can't 'lose' something that doesn't belong to you, I'm not a suitcase, a set of keys, or a teddy-bear on a train. B- see A, I hadn't been 'his' for a very long time.) Emotional baggage, I know, but it compounded the issue.

Lessons have been learned in terms of my former employer's HR practice on return to work. The 'problem' with me was that nobody in the organisation liked to stand up to me. They knew what I was, and what I could do, and they accepted my assurances that I was fine-to-return, because giving me what I ask for the first time is always the easiest option. When I'm good, I'm very, very good etc, nobody wanted to start a fight with me.

I did return to my existing role, with my existing employer, I'm obstinate and belligerent, I'm resilient and resourceful, BUT I tried to kick my disability under the rug, and do everything I'd done 'before.' In my case, that didn't work, in part, that was my fault, running headlong through the denial-phase, absolutely convinced that I'd 'get better' if I just tried a bit harder. I stopped mentioning things I was struggling with, because I didn't want to be the 'office moaner', honestly, it was just a bit of brain surgery, it was nothing, compared to so-and-so's broken fingernail, or such-and-such's tonsillectomy.

Cohesion and communication, that was what I 'did' for the largest part of my job, 'facilitating multi-agency solutions to benefit all, in complex cases.' Alanis Morissette could write a song about me, because I facilitated solutions for everyone but myself. I know there are no 'linear' or 'absolute' predictions with BI, that we're all individuals, and that medics would be deemed negligent if they tell us what we 'can' or 'cannot' do, rather than give us vague best-fit projections. That's what sometimes makes me want to bang my head on the wall on here, that so many people want a 'when', and there isn't one. I'm going around in circles now, acknowledging that we're all different, and at the same time bemoaning the fact that I, personally, wasn't given any real guidance on what I 'should' or 'should not' do.

Some of the cock-up was purely 'me', I own the fact that I tried to out-run my disability, I ended up running on fumes, and I burned out. Not everyone will have had as shambolic an experience as I did, and not everyone will unwittingly compound it. Cohesion and communication, ladies, gentlemen, and others?

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In a nutshell,memployer was accommodating and I was over optimistic about my abilities. I'm told I'm convincing, so I got myself back in on a phased return after assuring everyone that I was fine. Colleagues didn't know how to deal with me and I was unfortunately no longer Mrs diplomatic as I'd always been in the past. I still view my failed return to work as a positive. I can see now where everyone was going wrong (I include myself in that). Big issues with memory came as quite a shock - I was managing at home with a sorties of daily reminders - so what could possibly go wrong when I returned to work? I was unprepared for the effects of brain fatigue. When it happens at home,my ou can sit down and have a little rest, not possible in a busy workplace. When labile kicks in a home, you can lie of the bed and howl loudly or laugh and weep intermittently for half an hour and then get up and carry on like nothing's happened. That doesn't go down well even when you're lucky enough to have your own office. The general state of realisation and panic increased within the first two weeks as it dawned on my that my lovely job that I couldn't wait to get back to was much more complex than I thought. It didn't seem complex before.

It had been decided that I shouldn't attend meetings or interact with the public at first, nor was it considered wise for me to engage with my normal inter agency tasks - probably just as well looking back. It's a shame because immsure I'd stand a better chance if i was starteping a phased return now, or that might be just still a major lack of insight on my part. Either way it all ended in tears. Very sad. Sensory issues were also great but I managed to put up with it in my determination to get back to work. I realise now that they were likely impacting on brain drain. I still don't feel that's it over or that I can't go back to work - I'm sure there's something out there for me somewhere so I'll keep looking. I just need to find the right thing.

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I recognise what you're saying after my second bleed I was on the IC ward for 13 weeks but returned to work 3 weeks after discharge. I knew I'd been struggling before but my job was a passion and I was determined to succeed.

By the time I first saw anyone from Neurological support I'd already been knocked down crossing the road on my way home from work, even then a week off work and I was back.

When I met the Neuropsychologist he told be I already had symptoms of Post Complex Traumatic Stress Disorder only this made me step back and realise how messed up my life had become.

I had known I was very stressed, however before my TBI, I'd thrived in a stressful job so I believed I could cope.

It's possible my life was saved as being knocked down didn't come as a surprise, I'd had very narrow misses before, crazy I know!!

Looking back my return after my first bleed was way too soon, although lack of input from the NHS was a major factor.

Have you considered volunteering, as you would have more control on what you do and the hours you work. A positive experience is probably what you need now.

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I returned back to work in the company i'd worked for 10 years at that point. They'd never dealt with anyone who'd had a stroke before (and survived enough to return) so it was something of a learning curve for all of us.

I can't deny that it was very hard when i first went back and for several months. I felt like a fish out of water and gone from someone who'd been very competent and a multi-tasker to doing the level of work of an office junior.

I started on a gradual phased return.... and 10 months later it was discussed if i was to return full time or have my current working week of 3 days made officially part time. I opted for the latter.

I'm pleased to say that 2 yrs 9mths post stroke i'm still with the company and aside of working part time i've worked my way back to doing all that i did pre-stroke.

It's been and is very challenging at times with the lasting effects of the stroke and managing fatigue on a daily basis but i would definitely say my return to work was successful.... and for that i feel very grateful. :-)

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Okay so this is taken from my notes from that time... My accident happened while I was at work and my employers were pretty scared a huge lawsuit might follow so they were super accommodating...offered me six months paid leave and then a phased return to work.

By the time I did return to work the visible signs of my injuries were pretty much healed and the few scars concealed under some carefully applied makeup and because I could walk and talk at the same time and appeared to function they assumed all was well.

In a very short time it became apparent that I was not functioning... The bright noisy open plan offices did not help any. As time went on files I couldn't figure out got stuffed into the back of a drawer, important statistical returns were not made etc etc and after much deliberation I asked for meeting with my line manager who was horrified and shocked at what I told her and called in HR.

Their reaction to discovering I had no short term memory was to remove all communication equipment from my desk over night, they started to exclude me from meetings and discussions and then they moved my desk to another floor... and did not tell the person whose desk they gave me - he was very surprised to find me sitting there. They then gave me piles of paperwork to check... even though none of it needed checking, and asked me to perform tasks that I could not muck up and that would take some of the less important tasks away from my colleagues... all the while they were simply biding their time as they worked out a plan to phase me out. Eager to have purpose and feel useful I took to my new tasks and did them so well my former colleagues (same level management as me) started to hate me because my careful inspections and reports were highlighting flaws in their teams services.

Within six months it became so bad I was in tears at home because I hated every second of it and I met with HR and agreed a package and I walked away. It is sad because I was an asset to the organisation and would have continued to be so if they had only provided me with proper support.

Apparently I applied for another job after that , attended the interview and got the post. It was a step up from the job I had left and came with a starting salary that was a twelve grand a year pay increase.... to this day I have no idea why I thought I could take a step up but hey ho... they hired me... and for a while things were okay because I was new and not expected to know my way around, to understand the in-house systems etc... but of course over time it started to become apparent that I was not up to the task. My final undoing was the deadline for submitting annual reports and financial projections and I shocked everyone when I burst into tears at my desk... I don't think any regional operational services manager had ever done such a thing ;) This time I spoke with my immediate line manager and agreed that I would stay in post and keep the basics ticking over until a replacement could be found... and I trained the new girl in the basics and I left. My handover notes were spectacularly details in both instances..but only because I needed them to be in order to have any chance of functioning in the role

The crazy thing was that I still had all the knowledge and basic skills needed for those high functioning roles... but my memory issues were problematic and more importantly my executive functioning was shot...I was doomed career wise.

I have not been employed since then because I clearly could not function at my former level and was seriously overly qualified for the type of jobs that I might be able to handle...and even then I would need support...

So with no other choice I set up by myself and now I am my own boss of my home based business...and it has absolutely no connection at all with my former field of employment. I trained myself, set my own hours and working practices, choose what I take on etc and it works a charm for me.

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Hi Version2 (really cool name btw ;) )

I run a creative business now....possibly as far away from the corporate world as I could get.

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I have attempted several times to re-join the workforce, each time it made me feel too poorly. I resigned in July from my last part-time position. I have no patience for others who are rude and inconsiderate, so that rules me out of mainstream corporate work. I've instead re-focused on what I personally enjoy doing, i.e., dog walking and crafts.

I was under a neuro-psychologist last year where I underwent a battery of cognitive tests. It proved valuable in validating why I suffer so many cognitive and physical symptoms (cfs) after my bleed. As was highlighted on my mri, high intensity damage to areas (lesions) were the cause to ongoing different areas of cognitive abilities/cfs.

I've made several attempts returning to mainstream work but its all too much when allowances can't be made and the body gives out. I might appear fully 'high functioning', but its all bluff and bluster and limited to time I can keep up the pretence.

I asked my neuro-psychologist just how many of us ARE successful in returning to work? Her answer, most are forced to leave after giving it everything at the beginning, then realising they couldn't cope in later years, have had to give up work. I would say this is true for me too. I don't recognise this world of work, and I refuse to kill myself trying to fit in! There is no magic bullet or wand to bring me back!

Before you suggest volunteering, I have been volunteering in cancer support for many years as its something I am drawn to, having nursed (RGN) for years and done various counselling courses. I'm now having a rest from all of it, and its back to the drawing board of reinvention again, which is a never-ending cycle!

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I was told by my Neuropsychologist that they often have to help someone return to work and even then many fail.

I'm high functioning in many ways but there are many things I can't do and I'll say "I can't do that" and most of my friends still think I'm joking, at work it's even more of a problem.

I'm not sure why people think they have to understand the human brain to believe me, just accept it, after all it may be the most complex thing in the Universe.

In my case it seemed to be my ability to cope with stress, as my work was always adrenaline fueled chaos, with me as the calm in the middle of the storm.

It took me a long time to accept I was now vulnerable.

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The chaos/calm point resonates with me. 'Before' I was the high-end, complex, calm-in-a-crisis member of staff. It didn't matter what sort of straight-from-Bedlam chaos was happening, I was always the one with the calm voice, and the level head, who 'knew' the next logical step. (There's half a smirk, here, at sending much-more-senior staff away for the equivalent of 'a tin of tartan paint', just to get them out of my way...)

I always ran high-end, I never stopped, and, when some-colleagues told me to stop, or slow down, I took it as a personal insult, that they were somehow doubting my abilities. That's where my "You can't tell her 'no'." trait complicated matters. I'm dancing around the edges of the issue, but various parties made superficial attempts to tell me to slow down, in the face of a workload that was never going to decrease. I suppose they can tick the box to say they 'voiced concerns', and sleep easy. (That's bitchy, it's half past three in the morning, I've been awake since just after midnight again.)

I'm still waiting for my cognitive functioning assessment, in the hope that it will give me some sort of framework that some-future-employer and I can use to make an informed decision about my capabilities and competency. Nearly 15 years in a very highly specialised career that I know I can't realistically go back to, that's a kick in the bits.

The running-high-end most probably did lead to my 'burn out' (We don't call them nervous breakdowns any more, apparently.) I was trying to do what I had always done, with a brain that was (is?) still healing, I just don't seem to have an 'off' switch. (Until early evening, when my head decides it has had quite enough for one day, and downs tools.) There doesn't seem to be any middle ground with me, I'm either very high-functioning, or in shut-down mode, I genuinely don't know HOW to dial it back a notch.

I'm not 'up to much', and I suppose my life would be much more easy if I could just sit on the sofa, eating chocolate, and watching soap operas, but to me, that's 'time wasted.' I'll do my mandatory hour on the horrible job-search site later, and drive myself mad with the cross-referencing and analysis that's automatic/embedded behaviour in me. Each morning, I'm faced with several hundred vacancies that the skills-I-have-registered 'match' me with. 'Too far away', 'Not on a bus route', 'Includes shift work', 'Requires a driving licence', 'Requires a credit check.', 'Social Care by stealth', 'Temporary/zero hours'... that's before I start looking at the actual advert, instead of the copy-pasted mess, and note that some of the vacancies are scams, where you sign up for a job that doesn't actually exist, only to be told that there's a similar vacancy, but you need 'this' qualification, for £xxx.

It's draining, I'm back to my GP next week, to explain the detrimental effect that being in the Universal Credit/PIP loop is having on my mental health. Still in limbo with the PIP Tribunal, awaiting a date, and unsure how the 1.6 million cases that are to be reviewed will impact on my time-line. I'm not saying I will never be able to work again, what I'm saying is that I need to be much more careful with myself next time around.

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Thank you for that, Version2 I had been wondering 'what' the tests would measure.

I see your point about there being no 'baseline' data to compare with, and I have my own concerns about how I tend to perform under 'test conditions', it's not a reflection of the day-to-day functionality, because I'm more alert/aware when I know I'm being tested. I wonder if they factor that in, that I wouldn't be able to sustain that level of focus/attention 'all day'?

I've learned to adapt my activities, to minimise the impact of triggers/stressors, that's what I'm struggling to get across to PIP/DWP, that my adaptations take 'some' cognitive processing, my brain tends to feel like it has done a full day's work by lunch-time, and by afternoon/evening, I'm physically exhausted and cognitively fatigued.

It was 'Workplace Well-being' (Occupational Health in 'old money') who pointed out that I'd gone back to a highly demanding job with no formal cognitive functionality assessment, and that's feeding into my anxiety now, not-knowing where my gaps are.

I'll get ready to bite my tongue, and repeat myself, the assessment was requested in October 2016, bit of a bumpy year after that, so I didn't chase it up until October 2017, now I'm waiting-again. I will take your advice on not expecting much of any use from the tests, but I do need some neuro-psych input for my 'emotional well-being', my GP seemed to think I was asking for bog-standard IAPT counselling... 14 sessions of that, against the usual allocation of 6, and I'm no further forward. The 'life' stuff, I can deal with, I've been managing that for 40 years, it's the neuro-weird stuff that's the issue, I just need guidance on whether I could be managing myself better/differently, I'm right at the bottom of my own bag of tricks.

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One of the things the Nero Psychologist liked was I had tests results from the various Staments of special needs, for Dyslexica. So she could work out what has changed or not and where my base line was, and so forth.

Rather horrifying I think at least one of the tests was done before she was born!

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My tests were done in ten 30 minute appointments, so I thought how's that reflecting my real life, fatigue etc. However they did shows my weakness in fact it would have been impossible for me to do the 10 in one session, unless an ambulance was waiting!

I was told I would have 12 appointment for counseling with the Neuropsychologist, however I saw her for over 2 years

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Thank you for that. I think I might struggle to articulate that test-conditions 'me' isn't a true reflection of my day-to-day difficulties, and, if I have 10x 30 minute appointments, that's an additional 3 hours on public transport for each session, £5 bus-fare a session... Not looking forward to that element at all. (I'm out in the sticks, and neuro-psych is at the City hospital, I don't drive, and, no, I don't have anyone who could drive me. Yes, I do over-analyse absolutely everything, and answer questions that haven't been asked.)

Your other post, about previous/baseline IQ interested me, I don't think there will be a baseline result anywhere for me, so I'll be compared to 'average'? I generally score well for language, less well for shapes/numbers/spatial, I'm even worse with anything numerical since the BI, my head won't 'hold' numbers... (That rules out a job in banking, then...)

I'll see what comes of it, it's all a balancing act, and depends on how 'my' hospital structures the assessment, whether they block/chunk it like yours, and I have to allow for travel and stimulus, or they want to do it in longer segments, and I end up fogged-out and unable to see.

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My understanding is that everyone is given the task of being able to pronounce an increasingly difficult list of words = IQ pre. injury.

I scored well for language and almost everything else BUT 2 were abnormal, how can that make you very happy(?)!!!

Do you not have a Nowcard, my journey was a 4 hour round trip twice per month but at least travel was free.

One more thing don't presume counseling is all cuddly, mine was to challenge me all the time, however I thoroughly enjoyed that, our meeting were real fun!

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I'm chuckling at myself, I can say 'floccnaucinihilipilification' and 'antidisestablishmentarianism' but quite a lot of household objects end up being a 'that' or a 'thing'. Still, it has to be better than the 'cognitive functioning' element of the PIP-assessment, where you're asked to remember three words for one minute, and count backwards in sevens. (The test on the PIP assessment I COULDN'T do was spell 'world' backwards, my head has never needed to transpose like that, I can't do it, the letters wouldn't 'sit' in my head to be re-arranged, and I couldn't make them, no matter what I tried.)

I don't know what a 'Nowcard' is, without the PIP award, I'm not able to 'prove' I'm disabled-enough to qualify for free or subsidised transport, from what I'm reading, disability passes are only issued to people awarded the 'enhanced' level on 'moving around'?

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2 thing the 7 test is known as the serial 7 test and it's designed to test dementia patients, old Welfare Benefit case law raises serious doubts about it's suitability for other cognitive conditions. Having said that 2 Neurologists gave me the test, even though I told them it wasn't appropriate (what do I know!!).

Nowcard criteria vary between authorities, I think everwhere PIP/DLA mobility awards are a straight passport, however in the 2 areas I know well inability to hold a driving license is a second route.

Definitely worth checking your authority, the criteria can normally be found on your local council's website

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I'm chuckling about 'serial 7s', you're already getting some of the picture of how obnoxious and difficult i can be, I always have been, '7s' were my thing in primary school, 7 times table forwards and backwards, because everybody else hated 7s. My head can 'do' 7s, because I drilled it to, ask me 8s, and I'm clueless...

I didn't drive before the BI, and now I have visual disturbances as well as significant nerve damage in my left hand, even if I won the lottery, and passed my test in an automatic, I wouldn't trust my eyes. (I'd probably fail the hazard perception part of the theory test anyway.)

I'll have a look into Nowcard, I know my LA lean heavily on the 'enhanced' moving around award, and there's nothing really 'on paper' I can use to evidence that my disabilities bar me from driving.

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My GP gave me a report (No charge) listing my symptoms explaining I'd be a danger on the road. So they listed concentration and attention but they already had my test results.

The GP I saw asked me what the result meant in real life so the letter was essentially my words.

A GP may feel able, to take your word alone and write a very supportive letter, I did not have to provide any evidence from DVLA.

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Thank you, I do have an appointment with my GP on Monday, but my head is already scrambled with what I need to get through to him, I'll have to look up the Nowcard qualifying criteria for my LA and book another appointment.

(Another 'me' thing, I only really come on here when I'm trying to work something out, despite this text ping-pong, I'm not really much of a 'chatter'.) Oh, GODS, do I have to have a photo taken? I look like a bag of badgers.

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You should see my picture, fortunately it's in a card wallet which I can just place on the bus ticket box, so saved any embarrassment!!

I always try to write a list of what I want to discuss with my GP, that alone give some insight.

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Hehe, I think the photo on my provisional licence is about 10 years old, how anywhere accepts that it's 'me', I don't know.

I might physically write down what I want from the doctor this time, he's been my GP since I was about 12, but he still doesn't 'get' that I'm atypical, bless him, he tends to waffle and go around the houses, I'm very linear. (If he asks me if I'm 'a bit weepy', I WILL want to kick him in the shin.) I know 'now' what I need to ask him for, but there's every chance he'll spend half of the 5-minute appointment telling me about his Dad's pyjamas, I can't be side-tracked with anecdotes.

(I'm not even kidding, when I asked for the first neuro-psych referral, he spent half the appointment telling me about how his Dad didn't like the nurses faffing with his pyjamas in hospital, and the other half telling me he thought I'd look 'fine' in a mini-skirt. I WAS weepy by the end of that, I'll tell you. Compounded/Complex PTSD from 'before', I was struggling to process the 'lack of control' in hospital, and the way I'd felt 'exposed' in the completely unsuitable pyjamas the ex had bought, and the GP was trying to bat it back with "They've seen it all before!" and "I'm sure you'd look FINE in a mini-skirt!" You couldn't make me up if you tried.)

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Sounds like he's 104, bet he has some good war stories!

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My cognitive testing at least the initial was a full day with 30min break for lunch, was at the Wolfson at Queen Mary’s In Roehampton who have glowing reputation, the young woman doing the test did break me, I was fairly done even before Lunch! Took me a day or so to recover from that!

The Fatigue may well be something they want to see, as I can do a good impression of a normal human.

I’m a rather spiky profile ie spacial reasoning tests weren’t hard enough I didn’t slow which isn’t normal, I’m in the 2% in that narrow bar, though overall I’m fairly average etc. For myself the take home was slow processing, mainly.

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Thank you, Roger.

I'll just have to see how The Royal Hallamshire conduct the tests, and try to do any 'explaining myself' before I get too laggy to articulate without biting or yawning. I do tend to plan a 'rest' day after any major appointments, because I know that 'strange' environments tend to wipe me out.

I've only ever done online IQ tests before, and know they're not a true reflection, I do tend to score above-average, even now, so my linguistic capabilities outweigh the deficits I know I have with spatial/numerical problems.

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Thank you for that. It is neuro-psych that I'm waiting on an appointment with, for the tests, I had two appointments with them in 2016, the intention at the second had been to start the assessments. I wasn't in a very good place emotionally when the second appointment came around, the report is peppered with 'denies any concerns with...', the neuro-psych had inferred that I really wouldn't know where I was functionally until the second surgery had 'settled', and I pretty much bolted.

I've had myself re-referred, because even with my extensive range of 'additional to or different from' strategies, I'm only really superficially functional, and even retaining that level is taking masses of self-checking, and conscious behaviour modification. (One of my roles in my previous employment was as a Learning Mentor, I have a HUGE range of strategies for focus/attention, mood-swings and the like.) That prior knowledge can work against me, because I have a habit of finishing therapists' sentences for them, I 'know' lots of strategies, I just don't always apply them consistently, depending how much of a git my brain is being.

I'll see what comes of it, I don't want a silver bullet, or a unicorn, I just want a bit of paper that says I'm seeking/following appropriate support, if that makes sense? I think we were all 'thrown in at the deep end, sink or swim' it's just unfortunate that so many of us don't get it right first time.

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Time, I always have time... (until lunch-time-ish, that is.)

I'll start a new thread once I've done the essential kitchen-business I need to get out of the way this morning. (Rationing time is one of my strategies.) We're not one-size-fits-all, but, much like recipes, we can look at the basics of a strategy, and tweak it to suit.

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I know it's relatively petty, and 'leave your inhibitions at the door' was the phrase my GP couldn't quite find. (I'm the one with aphasia, buster, and I've been trained not to finish other people's sentences for them, but it's a 5-minute GP appointment, and you've spent 3 talking about your Dad's pyjamas...)

The ex was aware of my 'historical and complicating background factors' when he bought the pink shorts-and-vest pyjamas, from Primark, in the wrong size. I acknowledge that he was traumatised by my hospitalisation, and thought he was being helpful by buying me 'new' pyjamas, instead of actually looking in the house for the ones I was more comfortable in... couldn't find his own behind with both hands, and a map, that one. Shorts-and-vest, I think the last time I wore either was probably in my teens, I don't 'do' skin-on-display, he knew that, we were together for 20 years, but he still brought 'skimpy' pyjamas. Pink. PINK, for the love of all the Gods, I'm a redhead, I don't DO pink!

The Dulux colour-chart bosoms made me chuckle. I'm incredibly pale, milk-bottle pale, and I bruise like a peach. Both of my arms, from wrist to half-way up my biceps were BLACK with bruises when I came out of hospital, the bruising took weeks to fade out. I don't remember any bruising on my jumper-lumps, but it took me WEEKS to get all of the adhesive-pad black gunk off my ribs. I never thought, when I had 'those' tattoos, that I'd spend several weeks in the bath or shower, trying to scrub tracer-pad-gunk off black ink. Yes, they were some of the tattoos the ex had never seen.

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*Head spins* he bought me new pants as well... predictably, they were the wrong size, and the wrong 'fit'. (To be fair, he probably hadn't seen me in my underwear for at least 5 years...) I threw the 'new' pants, and the 'new' pyjamas away when I came home, I have never, in my entire life worn pants with that horrible cottony 'lace' around the trim, and they were hardly practical, given that the incision from the coiling procedure was in my 'bikini line'. (Pants-rage, that's a new one.) On my return to work, I was back in my 'own' pants. I never quite know how to respond on here, threads going off on tangents.

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Sorry, you're right. I'll delete my tangents! :)

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You didn't need to, it's natural human conversation, most of us start off on one topic, and then veer off to another. I'm not sure we would merit a whole thread for pants-and-PJs, my 'at work' tactic for staying on thread, when other people were deviating, was to write my 'point' down, and keep underlining it if the other parties in meetings were going off-topic, so I didn't forget what I wanted to say, or get thrown off course by ramblers.

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All the OTs, neurologists, physios and therapists in the world can't put Humpty Dumpty back together well enough to do the job he did before. Phased returns, adjusted work practices, reduced hours...are they working for us, or for the teams we're working with? There has to be a job that naturally fits with the limitations. That's the question that needs answering. And until then I say let's laugh about knickers because reality is just too scary to face sometimes.

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Bingo.

I broke a bone in my hand in 2014. I (eventually, 2 weeks later, I'm an idiot) had it x-rayed, the fracture clinic confirmed that my third metacarpal was broken, and told me to keep the support-brace on it for six weeks, and avoid over-using it. I wrote my risk assessment, and people stuck to it, because it was visibly obvious that my hand was strapped. With our brain injuries, nobody can 'see' that we're damaged. (Thank heavens, if people could see the argument I had with myself about my boots being 'too clean', they'd give me a very wide berth.) People 'forget' that we've had major surgery, or life-changing events, and assume we're 'better', or 'back to normal.'

There's no 'linear' with brain injuries, no fixed time-line, and the advice/support we're able to access varies wildly depending where we are, or how hard we research, and self-source. (With brain injuries...)

My personal experience was that nobody on the 'medical' side communicated with anyone on the 'employment' side, and it all ended up going a bit bosoms-skyward, because I was still trying to do what I did before. (Nobody does it better, etc.)

QI 'Nobody Knows!' klaxon, because nobody does know how much of our previous functionality we'll retain. I was in with my waffly GP this morning, and, when he wanted to put 'stress related disorder' on my unfit-for-work note, I had to ask him not to, because that's effectively medical code for "We don't know." We don't. (Less coherent and articulate than usual today due to GP appointment, neuro-typical people don't have to factor that in.) We don't get a fixed 'no heavy lifting', or 'avoid orange socks' guide-line, and we don't get any time-line at all, because no bugger really knows how brains work/repair.

As you said, many questions, no answers, I'm superficially functional for part of the day, but not as much as 'before', and it's an effort to produce that superficial functionality a lot of the time. (Minger warning, I hadn't washed for 3 days prior to the doctor's appointment, because I knew I needed to preserve my energy/capability for the Spanish Inquisition about why I still wasn't 'better'.)

The testimonies that we're seeing here, that some people return-and-fail, and the neuro-teams say "Yes, that happens sometimes." are a cause for concern. How to address, headwayuk?

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Hi Gaia_rising,

It's a very difficult question (and a fascinating discussion).

We have some quite comprehensive information on things to try when returning to work, but the 'return-and-fail' is a big problem and can hugely affect someone's confidence and ability to try again.

As version2 touched on above, if there's a job that naturally fits the limitations then it's much more likely to succeed, but many people simply can't find one. That can be down to a shortage of options locally, a lack of support finding an appropriate job, lack of appropriate rehab for the effects of brain injury or a number of other factors.

With a lot of cutbacks in the amount of support that's available, it's getting increasingly difficult to return to work with adequate help. There's a lottery involved in whether an employer is understanding and accommodating and despite some strong equality laws in the UK, they're still very much open to interpretation and are a big effort for people to enforce (especially as employment tribunals are no longer free for many people) [note - fees have now been withdrawn following a Supreme Court decision in 2017, thanks to Sealiphone for the information]

I'm going to raise this discussion with my colleagues and see if there's any information we can put together to guide and support people going through this.

It may take a bit of time, but we're also here to discuss individual circumstances through our helpline (0808 800 2244 or helpline@headway.org.uk)

I'd really value your thoughts.

Best wishes,

Andrew

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Thanks, Andrew,

It's a minefield, I know that I 'could' still do the majority of my previous roles, just not full-time any more, not 'repeatedly, reliably, and within a reasonable time-frame' full-time, there was no co-ordination between any health professionals and my employers, 'everyone' assumed I'd just eventually phase back to full duties, so I tried. It's devastating to 'lose' a career you've spent over a decade building, especially just a couple of years after a near-miss medical event.

I don't know if you've seen astriid.force.com ? It might be workable for some people with BI?

My personal concern is that people are potentially placed at risk, or inadvertently put others at risk, with the 'try it, and see how you get on' approach. I thought I'd 'get better', my employers assumed I was fully functional. I'm not exaggerating when I say that some of my duties were genuinely life-or-death decisions, things could have gone much more badly wrong than they did.

I'll email the helpline tomorrow, when I'm more articulate. (Fatigue every evening...)

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Thanks Gaia_rising.

Yes, I agree with what you say. For companies realising that the eventual goal isn't 'everything carries on as before' is important, and this is where sensible, reasonable adjustments are key. Sadly with little understanding of the effects of brain injury in the general public this often isn't available so 'try it and see' becomes a bigger risk.

We do have some information for employers on our website which may be a help: headway.org.uk/media/4123/b...

Astriid looks like a very good idea, and one we'll look at too. As you say it might well be workable for some people with brain injury.

I will have a conversation with my colleagues and see if we can strengthen our information - we'll keep you informed.

Best wishes,

Andrew

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Just a point about employees or potential employees and discrimination.

Employment tribunal fees are no longer payable for claims brought now, this follows the Supreme Court ruling on 26th July 2017 that the fee system was unlawful. Also Legal Aid is still available for Discrimination and employment claims.

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Thanks Sealiphone, that's great to hear.

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The base line comes from language, how able are you to read difficult words, this has a correlation to your pre TBI IQ.

I raised this dispute myself and I was told the correct pre TBI IQ score.

This then gives you some idea regarding loss of function.

Each test then addresses particular functions such as attention, these are not particularly helpful to the patient but when the OT assesses your work place and duties, they can then consider reasonable adjustment and aids, which address your difficulty.

The Pacing, Routine, Noise etc are generic suggestions about life the test scores are the relevant part for work.

The tests are one way to be prove you're disabled without that it's possibly back to work in the deep end, nothing wrong with you get on with it.

My tests showed abnormal scores but my measured IQ was the same as before my TBI.

This knowledge is not a panacea but an aid, don't expect a miracle.

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I was made redundant during my period of initial recovery, so had to go out and find a new, job. It is shocking how the interest changes and suddenly their is a better candidate when you declare you cannot drive and are suffering from the impact of a BI. Note: get an offer before declaring issues / disability.

I am back at work doing similar work but with less responsibility, but it has been a bumpy ride and theoretically, 18 Months in, I am still under probation. I turned up on my first day and HR had not passed on my healthy issue and at the time I was still signed off work.

No HR or Occy Health on-site didn't help and assigned a manager who had not managed people before, then assigned to a project in trouble. You could say setup for a fall. It is no wounded that people returning get signed off with stress.

I now have reduced hours, I get lifts in and my wife picks me up.

I have continuing fatigue and worse headaches whilst doing complex thinking and screen work. Not sure how long I will be able to keep it up for. Over 20 years until I am supposed to retire.

One also never feels part of the team. Evening meals with the customers or colleagues, business trips and even training are limited in their feasibility.

New Passwords are a problem and the expectation to manage as much as everybody else, whilst not working the same number of hours, irrelevant of reduced cognitive abilities and to concentrate on the same task.

I think you have to get lucky with an employer who really understands the changes and the Hugh amount of stress trying to come to terms with the new you.

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Just a note to people applying for jobs, if the potential employer knows your disabled they have to consider reasonable adjustments. So if someones unable to drive due to a disability they have to consider can someone else drive, this could be a personal assistant also doing other things, or the possibility of the cost for taxis, this is only in work costs not travel to or from work.

I applied for a job and didn't get shortlisted, couldn't understand why as I was over qualified. When I rang for feedback I was told because I couldn't drive, BIG mistake claimed discrimination and won at Tribunal, no job but the money was useful!

In fact to try and derail my claim they offered me a job!! I told them I'd never work for such an organisation, you need a good employer to succeed and even then it may be just be too much

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Hi sealiphone. Going back to work was hard. It's didn't work for me. Stress, headache, tried. I wish that my headway group will help you. 😕

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It was difficult for me returning to work after a SAH . I did arrange to meet with HR and told them the difficulties I would be facing. They have been a great support and now our company has changed their return to work policy due to this. It’s not just about the progressed hours , you need support in piers, extra help with admin and others to understand what you are going through. Hope this helps

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I think if colleagues have faith in you your chance of success is given a massive boost. It's not going to be without it's rocky moments and it's then you need someone to believe in you and give you faith that it can work.

It's sounds like your employer is one of the enlightened few with a real commitment rather than just having the Equal Opportunity ''disability confident kite mark' just for show.

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