Cognitive Assessment

[Gaia_rising]

healthunlocked.com/headway/...

I didn't want to hijack sealiphone thread again, so I'll make a new post. (Attentional switching deficit, apparently, I always thought it was just me being rude, now, with the brain injuries, I get to call it 'executive functioning deficit.')

I've had my tests, and, drum-roll, please, results. No real surprises, if I'm perfectly honest, but, being me, I wanted to make sure I wasn't missing anything, I think we all have a way of normalising and inadvertently compensating for our limitations. That's part of the issue, that I 'could' complete most of the tests, but they took more effort and concentration than they would have done in that fabled land of 'before.' (Could NOT complete the higher end of the block-sorting exercise, and got a little bit stroppy at the doctor when she kept asking me if I wanted her to repeat the question, I repeated the question to HER, "It's my processing, not my retention.")

I suppose the short version is that I'm 'functional, with adaptations', which we all knew all along. That'll knacker me up at my DWP 'Work Capability Assessment' the week after next, because they'll see that I can hold a pen, or sit in a chair, or lift an empty box, but they won't see me effectively zombie-fied in my armchair for most of the next day. The WCA has been re-scheduled, and now falls 2 days before my PIP tribunal, that's going to be one hell of a week. (Off-topic, see 'executive functioning.')

I had four appointments in total, the initial 'introduction' one probably showed the doctor all she needed to know, I was fatigue-lagging after 30 minutes, and, when she asked me a multi-part question after about 45 minutes of sitting under horrible lighting, in an office with a horrible-patterned carpet, I just looked at her, opening and closing my mouth like a particularly dim goldfish. I'd forgotten the first part of the question trying to retain the second, and spent so much time trying to remember the first, I 'lost' the second as well. (Usual adaptation for that is to have a notepad, and scribble key-word reminders, looks a bit weird, and I'll come back to a page of random words, and wonder what the hell they meant, but 'in the moment' it works for me.)

Noting that my attention was gone after 40 minutes, she decided to spread the actual testing over three further appointments, having initially said that she'd work in blocks of 1-2 hours at a time. (Two hours? Might as well ask me to run a marathon in high heels, I can't watch an episode of Game of Thrones in one go, Gods help me when the next series comes out, and they're 'feature length.') We'd filled in the bits of recent history since my last, abortive attempt at having the 'tests', and she'd concurred that my background in Learning Mentoring and complex case work with challenging adolescents, and their equally challenging families gave me something of a head-start in the 'adaptations and coping strategies' department. My head was banging, I got lost on my way out of the hospital. I've probably been to that hospital a dozen times now, I KNOW where 'my' exit for the bus-stop is, but an hour or so explaining myself to a very helpful young lady had drained my metaphorical battery. (Gods, 'before', I could stay on task through five-hour case conferences, and bounce straight from an emergency first aid call-out to splitting up a fight without stopping to catch my breath. The funeral for 'before' me will be held at blah-blah, no flowers, donations to Headway and the local food bank, if you please.)

My background does give me a step-up, a lot of my work-around strategies are adaptations of mechanisms I'd 'teach' to disruptive or damaged youngsters. (When she asked me if I wanted her to repeat the question about it taking 'x' people 'y' hours to dig a hole 'z', what I actually wanted to do was punch her on the nose, so I counted my fingers, and repeated the question back to her, I'm permanently angry, it's horrid, and quite emotionally draining to stay on top of it.) The 'problem' with me is that I know the reason for most of the tests. The other problem with me is that I'm a smart-arse, when she asked me to tell her as many boy's names as I could think of, I thought I'd be clever, and do it in alphabetical order...

I can't remember all of the tests, only the ones I had difficulties with. The 'match these blocks to the pattern on the screen' was a nightmare, I'm not a 'visual' processor, I don't 'do' shapes. I told her it was hurting my eyes, and making me feel dizzy. It was, I can read maps and such, but my head can't rotate shapes, I was never very good at that, on the old IQ tests, now, my brain slams the anchors on, and says 'Nope!'. At the end of the first full session, my brain was lagging, and there was another potential nose-bite moment, on the 'how are these two words similar' test. Fence/anchor. I'd responded that they both 'stop' things, but that wasn't on her answer-sheet, so she asked me to 'try again.' "Restrict, impede, STOP, it's the same thing." "It's just that the answers I have here are very specific, do you want to have another try? "No, I don't." Obstinate toddler-mode activated...

I'm rambling. The linguistic tests, apart from blasted fence/anchor were all fine. The memory/recall tests were 'better with prompting', anything visual-spatial, or anything involving numbers was decidedly dodgy. I know, from working in education, that it's perfectly natural for some people to be 'stronger' in one area than another. (Apart from my son, the weirdo, he's a really even spread, and high-functioning in everything except 'putting things away', yes, he's back from uni, and the house looks like it's been rolled down a hill.)

We did have the discussion about 'test conditions' not being reflective of my day-to-day functioning, that I wouldn't be able to maintain that level of concentration all day, and even 45 minutes of 'thinking really hard' led to BIG FOG the following day. It's the way you drive to pass your test, as opposed to the way you drive after time, nobody would drive anywhere if they had to be test-standard at all times, it would wipe them out. Much like compensating for an injured brain does.

I'm functional within a narrow window, the fatigue and the loss of peripheral vision have been noted, as have a number of (patronising) strategies that other health-care professionals, or potential employers could use. (Repeating questions, GODS that irritates me, I process better if I'm asked to repeat the question myself, to clarify retention, but these are broad-strokes generalised strategies. Frequent rest-breaks, additional take-up time, avoiding visual over-stimulus, and an acknowledgement that fatigue will occur.)

There we go. I've completed the tests, and had the results, she's referring me back to the Consultant for the vision thing, everybody and their dog has already raised the vision thing with the Consultant. (See earlier post, probably October/November 2016, where my optician asked for a specific test, and my GP and Consultant ordered a different one, the same one the optician had already done...) The Neuro-Psych is of the opinion that my current functional difficulties are 'More mental health than brain injury related.' Another nose-bite moment, because my mental health issues were manageable when I had a whole brain... she's referred me back to the community mental health team, who think that group therapy is the next thing to try. (Face.)

That's where I'm up to, my GP has declared me unfit for work, I'm on my second 12-week sick note, which has triggered DWP's 'Work Capability Assessment' process, the week after next, I get to drag my carcass to the city centre, and be declared 'fully functional' because I'm not completely incontinent, or a paraplegic... yes, I'm cynical, yes, I've seen the 'guidance for assessors', it's available via .gov.uk and it's awful. (Nice try, DWP, putting a line near the start saying that most of the information in it is too complicated for we non-medical dunderheads to be able to understand, I don't touch wet paint, I lick it.)

After nearly two years of nothing happening, everything's happening all at once, I now have a 'Long Term Conditions Team' social worker, as well as allegedly having a Welfare Rights Advocate... Mental Health started assessing me and then decided it was more of a brain injury thing, Neuro-psych assessed me, and decided it was more of a Mental Health thing, I'm being chucked around the NHS like a hot potato, nobody wants me, boo-hoo. Citizens Advice are trying to help with the debt issues, but all of the voluntary sector agencies are so over-stretched that it's taking ages. PIP tribunal the Wednesday after next, and I've reached the 'what is the point?' stage, not an ideal place to be.

That's me. 'Highly superior' for language skills, 'below average' for visual-spatial, I have it on paper, I'll put it in the folder with my GCSE certificates, shall I?

Now, to consider the best time of day to artificially inseminate a pumpkin plant. No, really, that IS on today's agenda. It's me, of course it is.

[Kirk5w7]

I understand you and where you are coning from, probably no consolation and why would you care but i love to tead your ramblings. Just how my mind thinks but im not so eloquent.

Im sure theres a book there in side of you.

A book of how we are treated once brainijured. So may assume it destroys our ability to the nk even a little bit intelligently.

Hope all goes well on the next stage, i was “lucky” i hit retirement age that meant i no longer had to prove i could no longer work.

Janet x

[Gaia_rising in reply to Kirk5w7]

Hehe. My 'work coach' at the Job Centre keeps telling me I ought to write a book. When I was still on 'full commitment' work-search, I had to fill in a diary sheet, accounting for every hour I'd spent searching for work. Needless to say, I didn't always keep it strictly professional, the diary entry for 2/1/18 starts something like "Cooked the lobster that's been lurking in the bottom of the freezer for 3 years. At the point of writing, nobody has died of the sh*ts. I will continue to monitor the situation."

If I don't laugh, I'll cry, but it's really not funny any more. This is the 'final stretch' for me, I just need to get through the WCA and the PIP tribunal, because I'm struggling to think straight at the moment. (Not sure I ever did think straight...)

[Kirk5w7 in reply to Gaia_rising]

You definitely have a wry way of dealing with the world and the establishment, i love it, dont ever lose it.

Janet

[Kirk5w7 in reply to Gaia_rising]

Ive just started reading that post you mentioned at the start of this one and ive had to give up, not because its boring or anything like that, i just havent the time right now. Im supposed to be getting organised for Lincoln, im doing the Walk with the Baron. Ill come back to your post when im comfortably ensconced in the hotel later.

I just wanted to comment on the bit you wrote about the Job Centre, my son wont go back and sign on because of all the palaver he gas to go through.

He was daignosed as being on the Autistic Spectrum in the last year of uni. He has his degree but now struggles with the whole job market. He had a job, first interview brilliant, NOT, it was a call centre and although he completed all his training, left after 3 months i thought he would have a nervous breakdown. But to get to the job centre, he cant see the point of applying for jobs that are not suitable or he isnt interested in. And who can blame him?

!!!!!

Janet

[sealiphone]

Thanks for not holding me hostage in the other thread!

I can regognise what you say about questioning the legitimacy of the test and the issue of mental health effecting functional ability, as this all came up for myself. I think it's impossible for me to know how much depression was impairing my cognitive functioning, as it lasted 12 years and now I suspect my Mirtazapine whilst stabalising my depression may have a down side as my cognitive abilities have not changed.

Again I was seen as not appropriate for the mental health service whilst Neuro-rehab didn't have the resources to help. Fortunately I moved and whilst again refused by mental health my new rehab did have the resources to do a Neuro report, prescribe the Mirtazapine and do 18 months of psychodynamic therapy.

Obviously a big issue is funding, which as you say CAB and other agencies are struggling with as well, I'm intrigued by your "alleged WR adviser" comment.

Just one last point there is a fundamental difference between PIP & ESA in that ESA has separated physical and mental/cognitive symptoms in to separate activities.

Good luck with both.

[Gaia_rising in reply to sealiphone]

Thanks for the 'good luck', at this point in the process, that's the only thing I have left, my reasoning behind still perusing the PIP, despite being superficially functional for part of the day is that I'm not going to be a quick-fix, whether the majority of my issues are cognitive, emotional, or a messy combination of both. I will never be 'normal' (I wasn't 'before'), and I'm going to need a period of intervention on the MH side, and some investigation on the Neuro side before I'm fully functional. In this state, I'm not functioning at full capacity, I self-limit to keep myself and others safe, and I probably am over-restricting.

The barbed comment about the 'alleged' WRA is because he's been 'allocated' to me since September 2017, and I've met him once, for about three and a half minutes, when he called to my house to pick up my originals of the tribunal 'bundle of papers', the third-party pack not having been sent to him by March 2018, when he called. I know you're busy, I know that all services are spread wafer-thin, but I have a chap who's supposed to be 'representing' me at tribunal, (In less than a fortnight) who will be basing any arguments he makes on the paperwork, not on 'me.' Precious, aren't I? It's just my snark that I've spent my entire life trying to do things on my own, and not ask for help, then, when I do ask for help, I get juggled all over the place, because I'm not box-shaped, and don't align neatly with criteria.

I see your point with 'ESA', but that's the old-money version, I'm one of the Universal Credit guinea-pigs. The 'Work Capability Assessment' criteria have had more revisions than your average GCSE student, they're in no way fit for purpose, and seem to be of the 'if you can talk, you can sing' variety. Yes, I can speak, and stand, and probably lift a half-litre carton of liquid, but I CAN'T do that repeatedly, reliably, or within a reasonable time-frame....

[blackperil]

Took me about an hour to get through your post and replies.

I guess I am lucky in that I am still maintaining work all be it at reduced hours and being a zombie after work.

I think your post high lights the same story for anybody in our condition being passed between departments in the NHS, though I have had to fight to even get the referrals as my GP has no clue as to the services offered, falling into the bracket as not too bad.

I can make a cup of tea, but it may take 3 attempts then I will put it down and forget. I have not had to battle with DWP and have not bothered with PIP. I do not consider myself sufficiently disabled even though my wife has to pick me up from work and I am pretty much straight to bed afterwards.

I may have missed a previous post, what are you visual issues, if you do not mind me asking?

My Nueropsych showed I am above average in executive functions, but below average in word association, working memory and listening comprehension.

My clinical psychologist said that I am luckily I started off as high functioning as I would more than locally now be deemed as having learning difficulties if I started off average.

In terms of mental health, the main driver is the uselessness and disconnected process as supplied by the NHS, especially if not presented through primary care. Over 2 years and still no Neurology, I have had 3 cancellations.

Sorry no answers, just a chance to moan.

[Gaia_rising in reply to blackperil]

The visual issues, like most of it, are fluctuating. There's a constant low-level 'flicker' as if you're looking into a mirror and you accidentally nudge it. Everything 'wobbles', and I have to focus through the 'wobble'- leads to eyestrain headaches, even with my specs on.

There's also patchy vision-loss, most often it's the outside peripheral that goes, and I catch myself turning my head to see things that would normally be within eye-movement range.

On bad days, it's the flashing lights, similar to my old migraine aura. At the lower end of that range I can barely see enough to move around safely at all, at the upper end, I have to stay put, because there's not enough vision to move safely.

I'll see if the Consultant takes any notice of the Neuro-psych's request for attention to the visual stuff. He point-blank disregarded my request, and the request from Workplace Well-being, then repeated a test that had already been done twice. It's not an issue with the physical structure of my eye, the optician thought it might be the third aneurysm sitting on the blood supply to my retinas, hence the fluctuation.

[blackperil in reply to Gaia_rising]

Do you still score 6/6 on an eye test?

My vision is like looking through patterned glass or heat swirls in water, but I can still focus on text. I also have loads of floaters and monocular double vision. Eyes are fine apparently, nothing to worry about.

I also get noise like when an analogue TV was not properly tuned in, but only when I have overdone it.

I keep walking in to things that are not in my main field of vision.