The ATOS assessment.

So, now, to get back to S. This is what happened at the ATOS assessment in August 2012, in his own words.

I was driven to the assessment centre which was badly signposted at the back of a local government building, almost like they wanted to hide it. I eventually got inside and hobbled to the desk, paperwork in hand. They kept me standing for ten minutes or so whilst they loudly talked about their weekends and made coffee in the back room. Eventually someone came out to see me, and after looking at all the documentation, told me to go and wait to be seen.

The bland waiting-room had plenty of uncomfortable seats in it, and none that I could see had arm rests. After a sweaty, anxious and painful wait, sitting and standing as my spine dictated, I was ushered into an office/consultation room. I was greeted by the “health care professional,” a large jovial man with quite heavily accented English, who tried to put me at ease (off my guard). He explained that he would assess me and give me a physical examination.

He asked a lot of questions, most of which I now realise were somewhat leading. He didn’t enquire about my eyesight, didn’t even get a test chart out. The physical consisted of lifting my hand to shoulder level, and my legs to whatever height I could manage without pain (not far).
I was up and down like a yoyo as I couldnt sit for very long, and still can’t without an unpleasant level of pain.

He quizzed me on my family and hobbies, which I talked about to him. When I dropped my meds on the floor he didn’t even try to assist, just looked at me like a bug as I shuffled them to a place where I could reach them with my feet, and sort of kick them along until I could half-crouch and scrabble for them. This all seemed to satisfy him and he ushered me out.

When I got the results back, I was stunned. Apparently I have a great social life, enjoy wearing armour, running about, archery and so on. I “claimed to have vison in only one eye.” How the hell would he know? Did he have ct scanning vision? Because he sure as hell didn’t test me.

Also, “Can touch forefinger and thumb on both hands.” Weird that. I dont have an index finger on my left hand. The whole thing was riddled with inaccuracies and downright lies.

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Family tensions.

Today, back to the present. This is an example of the stress the ATOS situation causes. Between me and him, who are as loyal as penguins, and between us and my parents.

I drove all three of us over to my mum and dad’s as there’s a goth weekend nearby; a chance to catch up with my folks, old friends and have a mini-holiday at the same time. Fantastic! Unfortunately, I’m still getting used to my new lot of anti-depressants, which didn’t exactly help the situation. My mum knew that I am on ADs and had been finding things very tough lately. I had opened up to her and told her I couldn’t cope very well of late. My parents had helped me out with money to bridge the gap as I pay the lion’s share of the household bills. I know how incredibly lucky we are to have that help from them,from S’s parents and from some wonderful, wonderful friends.

Everything was going well until we came back to my parents (who were out) at 5ish, to find that one of the electric rings was still on from lunchtime. I had asked S if it was off and he had replied in the affirmative. I was angry but didn’t realise how much. Of course, I realise that it was from using an unfamiliar cooker with knobs that weren’t clearly marked. His reduced vision meant he didn’t notice. It wasn’t until he’d made me a cup of loose leaf tea while I was putting away the dishes that I exploded. He’d put about half an ounce in there instead of a pinch, and it was undrinkable.

Out it all came. I don’t think I’ve spoken to him so harshly since we first moved in together fifteen years ago. I just couldn’t stop it coming out. How he couldn’t do anything right; how he couldn’t bring any money in and he was reliant on me and my parents; even how he couldn’t get home without me driving him. It was full of belittlement and frustration and rage, and I watched the scene in horror as the ugly words tumbled out of my mouth. He was incredibly hurt, then enormously angry, and took himself off downstairs. I had devastated him, and me…an hour or two later, I apologised, he let me, we hugged and made up, and I carried on saying sorry into the next day. I’m really lucky to have such an amazingly understanding man and at times I really don’t deserve him.

The next day I was still smarting, and S was still grave. My mum picked up on the atmosphere and when I went to our room she followed me. Her conversation began with

“I know, I know…I understand everything. Have you thought about divorce?”

I was utterly shocked. She told me I needed a break, that I should move back home for an indefinite time, enroll at the local uni and finish my course there. That she would help me. I never should have moved so far away from home and she rued the day I moved to our town. That “even the mentally handicapped can stack shelves in a supermarket for a few hours a day.” She had never approved of S and I fussed after him and my stepdaughter “like a mother hen.” That they weren’t my responsibility and definitely weren’t hers to help support [we would probably be homeless and definitely up to our scalps in debt otherwise]. Some of what she said I agreed with. Her money was there as a short-term measure, as I was fragile and had been working all the hours I felt I could. The visit on my own we’d talked about at first, and a break might get me more focused on the work. So I agreed to it.

And then, and then…I thought about the words. They stung. We are a family. We have a home and it is not where my mum and dad live any more. She had not asked me how things were, but asked closed questions all the way. And all this…new stuff that had surfaced. They get on well. She even laughs girlishly when he is around and S loves spending time with her. She supported me, and him, all the way through his op, so I thought…or was it just me she was supporting? I knew she had doubts about him at first – I was 18, he was unemployed at the time, and had a young daughter – but I thought he had proved himself to her over the years. Seventeen of them, almost to the day. And to imply he was lazy..? She knew his problems. She reads the papers and listens to the news, and knows the situation with ATOS, with the system. She knows about the many who have not got their Incapacity Benefit or DLA and have died shortly after, either from their illnesses or by their own hand. Plus she had insulted all my choices.

After she went, S came downstairs. I told him what had been said. It floored him. We formed a plan of action. When she returned, I told her that thanks but no thanks, please keep your money. We will make it without any help. She replied with “You will never manage on your own…”

Red rag to a bull, that was. I was furious. I am independent, was brought up to be. I hate relying on others and I did my level best to remain so until we could do so no more.

After a while we talked and we understood each other a little more. I will still get some help from them. She now knows that if you aren’t eligible for a benefit, you aren’t eligible for support to get into work either. That his back is too damaged to do manual work, and that had been recognised by the tribunal, as had the depression. His eyesight had not, so he did not get a positive result. That she really didn’t know or understand everything. “But you don’t talk to me…” Mum, I do, but the depression and the situation means I just can’t keep going over it lots of times without it severely affecting me. That and the previous tablet turned me into a zombie unable to say much in the way of anything meaningful.

I trusted my mum implicitly to know what to do. But because I opened up to her, this happened. Things will never return to how they were. My family is here. We are a unit, all three of us together. That is at least one positive thing. We are us.

What is wrong with him, then? Part 3 – The Op.

I’ve been scared to write about this. And unsure how to. I will probably miss a lot out as although it is important to me (for example the way in which S’s parents and my mum and aunt looked after me), it’s not that crucial to S’s case. This is only about me a bit, and I don’t want to be too indulgent. And I will not write it as a student nurse would, because at that point I was not one.

Summer 2007. S was admitted to the Walton Centre the day before the op in the company of me, my mum (an absolute shining star) and later in the day S’s mum and dad who’d travelled the 6 or so hours north and were staying nearby in their campervan. We were staying at my aunt’s, about 40 minutes’ drive away.

My mum and I spent the day in Liverpool trying to distract ourselves. We knew there was nothing we could do, and that he was in expert hands. To a large extent, it worked and we met up with S’s parents at 6pm, when we were told the op should be over, and he would be recovering in HDU. We waited in the family room. And waited…we were all getting rather afraid. We had all been reassuring ourselves and each other. The op could have been late starting; they’re just finishing up; the golf had been too strenuous the day before; you name a reason, we probably spoke it out loud in the next three-and-a-half hours. But then we had someone come through and explain that it hadn’t gone quite as planned. The surgery had gone well but there had been complications. S was not yet in recovery and was still in theatre, but it wouldn’t be too much longer.

It was 10pm when we were called into a small office to be told the news. In there were the surgeon, a doctor, the anaesthetist and the four of us packed in together in the hot, airless room. We were told that the operation, performed transcranially [a section of skull was removed] had been successful. The tumour had been bigger than expected; about the size of a tangerine rather than a plum. Very unusual to be that big. One optic nerve had to be cut to remove the tumour. The hypothalamus had also been affected. About 15% of tumour tissue had to be left behind because of this. His head had been closed up.

When the tube was taken out, his oxygen levels dropped sharply. Fearing a blood clot, his skull was opened up again as an emergency. There were none to be found, and he was closed up again. He kept having hypoxic events [oxygen levels dropping dangerously]. They didn’t know what was causing them. We had plenty of opportunity to ask questions and to talk about what had been said. There were tears in the anaesthetist’s eyes. I could see that she had been crying and had had to compose herself for this meeting.

We were told that he was now in intensive care. We were told that because of the lack of oxygen he was unlikely to make a full recovery, in the event that he recovered at all. We were all told to go and see him to say goodbye.

So we did, all of us around this fleshy thing that we knew was S. We couldn’t see much between the bandages and the blankets, and around the ventilator. A face was there that barely looked like his. Bright red, swollen, lips pushed out, mouth dragged open. I had expected him to look a bit like when he was sleeping. He looked like nothing of the sort. It was an utter shock.

None of us wore protective aprons, and I was not asked to tie my hair back. There were four of us round the bed. We didn’t take any precautions because they wouldn’t be needed. After we had been there for an hour or so, we were called away to talk again. We were called back about ten minutes afterwards, as he was going this time. Three times in all we said our final goodbyes to my beloved, their son.

All that night we sat up with him, crash trolley at the end of the bed, oxygen sometimes dipping as low as 30% despite being on 100% oxygen. He was in a chemically-induced coma. He had an irregular fast heart, was producing litres of blood and mucus from his lungs and had no urine output. He was in danger of organ failure as well as oxygen starvation. The only times we left were when we were told to and the curtains drawn round. We started taking it in shifts so we could talk to him, hold his hand and give the others a chance to have a cry, a talk, a cup of tea in the family room. We did an awful lot of talking. What would happen if he needed to be taken off the ventilator with no hope of recovery; if he was in a permanent vegetative state; if he needed 24-hour care; how we could go about adapting the house or moving elsewhere if he needed specialist equipment. We left at about 8am, when the nurses convinced us that he was stable enough for us to get some food from the canteen, and we were straight back to him.

I will be forever grateful to S’s parents for the way they treated me as his love and his best friend, and the one whom he had chosen to share his life. I was not officially his next of kin. They could, if they wanted, have cut me out completely (I have known this to happen) but they did the reverse. They made sure not only that I was included in talks about his future, but that I had primary say. They are amazing people and I am proud to be a part of their family.

The next few nights we stayed on the hospital site, in a room provided by ICU. It was too close a call to spend even a night away. His two younger brothers travelled up to see him. Every second he was still there was a victory; every false start was a triumph, like when he slowly recovered after being trialled on 80% oxygen and he could not cope. Close friends made the journey to see me, knowing S was too ill for anyone but family. The surgeon told us that it was a “bloody miracle” that he had survived.

There was an amazing moment one night. It must have been the third or fourth past the operation. His dad had finished a shift with him, and I came in, took my customary place on his left hand side and said “It’s just me and thee now.” He squeezed my hand. He was still in there. The moments kept coming. Two days after, he was awake when we went in to see him. His first words to me, barely understandable through the mask, were “Somebody shoot me.” He was in pain. But everything changed from that moment. There was actual hope.

He spent three weeks in hospital in the end, and in the last week, after the hallucinations and confused conversation faded a little, raring to get out. Oh, there are many tales that could be told. How because his jaw muscle had been cut, he could not eat. How sweet a cup of water tasted. How his surreal sense of humour meant that the charts were continually being checked for errors. The staples in his head were removed, all 47 of them. One of the doctors wanted to sedate him to drain fluid from the huge fluid-filled lump which covered half his forehead, but he refused. He had ECGs and MR scans aplenty. It took over two weeks for him to be off the oxygen. He was ecstatic to have his first bath and his hair washed, and cried when he heard a blackbird sing.

So, I finally got him home again. I helped him recover; helped him learn to walk again as his muscles were too wasted to support himself properly. We evaluated his progress together and kept each other’s spirits up. We got married the following year, and I started on the long road via an access course to becoming a nurse.

Problems since the op? The longer term ones? Post-traumatic stress disorder; visual impairment (blind in one eye, limited field in the other), memory problems with events, present and past, and words (resulting in some peculiar substitutions). He is less socially inhibited, and will for example swear or joke when it’s not appropriate. He gets tired on little exertion and drops off at a moments’ notice, like a toddler does.

All this is why it fucking BREAKS me that ATOS think that he is not good enough to be supported.

What is wrong with him, then? Part 2.

First, a preamble.It will make sense later.

 

S had been having strange symptoms for two years or so, and had been to the GP a good few times trying to get some answers. He’d started sweating profusely, and feeling dizzy. Once, he fainted on a quiet country pavement and had no idea how long he was out for. Apart from slightly raised infection markers, there was nothing wrong with his blood samples. It was explained as a mystery bug, or some unidentified virus or other. There are a lot of them about after all. He had migraines as well. They became more frequent, in the end having two or three a week. They were of the type where he saw stars and flashes and had to lie down in a darkened room. When he wrote me notes in this state, it looked like a four-year-old had scrawled them. As an interesting side-effect, he could easily tell when the weather was about to change, even before the birds did, as changes in pressure would bring them on. He also had something wrong with his eye. It was since he came off his mountain bike in his early teens, with the aid of a tree in his face.  One eye had a slight wobble when he was tired. This slowly got worse, the wobble becoming uncontrollable, but so imperceptibly that neither of us gave it much thought – it was just some damage that had taken time to show itself. The optician even found that he had a large blind spot in that eye, but as the brain naturally compensates for this, S hadn’t noticed it. We were concerned, but thought that was it. The doctors he’d seen hadn’t made any connections between all these separate elements. We were under a suffuse cloud of worry but as it wasn’t being followed up, we reassured ourselves that it would all resolve, some way or another.

 

And so to a dramatic bit.

S was mugged on the high street of our town in October 2006. He was walking back home from a friend’s house at 8pm on a Friday night, and was challenged by two men. When he wouldn’t hand anything over, he was headbutted in the face and he lost consciousness. When he came round, he staggered on to a fast food shop as he knew they had CCTV and the men would be loath to enter. While a staff member phoned the police for him, S realised his nose had been broken and reset it on the spot.  When the police van turned up, the men were long gone. Fortunately on a brief tour of town, S recognised and identified them. [For those who like closure, the men went to court and were convicted, and for a wee while one of them paid damages to him from his Jobseeker’s Allowance. Not quite a happy ending but it will do.]

S had problems with his vision after the mugging. He described it as being like black snow, or cinders falling from the sky. It took my mum (on the phone) and I two days to convince him to go up to A+E at the nearby hospital and get it checked out. By this time, the cinders were slowing and the doctors didn’t seem too concerned. But after a few scans, it appeared that S may have fluid on the brain, and this was assumed to be due to the mugging. The scans were forwarded to the neurological hospital in Liverpool, Fazakerley, to be checked. S got a phonecall while I was at work a few days after his initial appointment.

 

Here, I’m going to ask S to write this in his own words.

I got a suprise call from a Mr Lawson at the Walton neurology centre. It went something like this:

“Hello, Mr E. I’m Mr Lawson at the Walton Centre. We have reviewed your scans, do you have a seat to hand? This may take a while.”

“Er, OK.” *sits down* “So…um, what’s going on then?”

” Well, we reviewed your scans and have discovered what appears to be an anomalous mass on them. We would like you to come over for more tests, if that’s OK?”

“Anomalous mass? What is that then? Like a tumour or something?”

“Yes, I’m afraid to say it DOES look like you might have a tumour.”

*Goes cold* “Oh shit, so, I have a brain tumour? Shit. So, er how long have I got?”

“Oh, it’s OK really. It looks like a pituitary anomaly, and they are normally non-cancerous, so we will run some tests, and probably have to do some sort of procedure to remove it.”

” So, I need brain surgery?”

” Probably, but we do this sort of thing a lot, so please try not to worry too much.”

We then proceeded to make arrangements for a battery of tests. This sort of went on in a blurry fuzzy haze, and I spent the rest of the afternoon sitting staring at a wall and blinking occasionally.

That is how I found him when I came back from work that afternoon.

The next six months were rather high on the stress front. Parents were told, and we all tried to come to terms with the news. Most of this time was spent waiting. Waiting. Agonisingly waiting for news and a date for the surgery. S kept himself busy looking at Youtube clips of the operations he was likely to have. He has a curious mind and likes to know exactly the kind of things he is up against. We were fascinated and horrified by the position of the pituitary – it is so far in! So much to move out of the way!

Waiting is a curious thing. Looking forward to something, like, I don’t know, a trip to the zoo is brilliant. You want to get away, do something different. It will be hectic and you need to be organised with the tickets, the packed lunch, the directions. You will have your family with you. And it will all be worthwhile. Waiting for an operation is bizarrely similar in many respects, especially one so far away. But you don’t want to get away…you need to get away. It will still be hectic, and worthwhile, and with your family, and all those other things. But knowing that your loved one’s sight depends on it, and the quicker it comes the better it will be…Stress and anxiety became a part of our everyday lives, with the tumour, jokingly named “Junior,” and the operation being everpresent. Sometimes there were those few moments of bliss after waking, when I didn’t remember, and then the lead weight was back again, sitting on my heart. S of course had quite another experience of the same time, which I will not even pretend to describe. Months passed and we heard nothing. But it was all still there, every single lucid moment.

 

We finally got a date through for the operation. My first reaction was indignance. It was the day before my birthday! How the hell could we have a good time with S in hospital? The mind is a fascinating thing and it deals with horrible facts in its own special way. Somehow, thinking about how my birthday was ruined meant that I didn’t have to think about my love’s head being cut open.

A few days before, after the trip was organised, somewhere to stay the night before, bags mentally packed, that date was cancelled. It left us feeling bereft and even more anxious than before. Even more time to wait. We had been told that the operation would happen inside six months or significant, permanent and irreversible damage would be done. Those next six weeks were like being peeled raw with my nerves exposed. And then the new date came. And this time, it wasn’t cancelled, and this time it had to be real.

 

I’ll stop here for now. There will be a part 3.