Entitlement – an ugly word?

So, I can’t sleep. I got two hours in total before I woke up, twitching, jerking and irritable. Cats cleaning themselves really loudly. My husband breathing, that sort of thing.

I tried to stop my heart racing and myself from entering a full-blown panic by asking S to turn on the radio (it’s on his side of the bed), as the World Service, our usual station at home, is usually employed at a lower volume than normal in such instances. Then breathing exercises, then cuddling that beautiful, damnable noisy cat until his tail twitched. No can do. So, back to something I’ve been mulling over for a day or so.

I mentioned in my last post that S was entitled to his money. Someone I once knew vehemently disagreed with this a few days ago. She was aggrieved that I considered him entitled; that ours was a something-for-nothing culture; that we should go and live somewhere else to see how things truly are, like they did. This came as if from nowhere and I was truly shocked at her venom.

So, entitlement is a loaded, ugly word it seems. The search engine of your choice confirms it to be a guarantee of rights under law as well as in the more pejorative sense, that these things are felt to be deserved. But can it not be that if you live in a country where these benefits and rights are established and for whatever reason you are not recieving those benefits, that you deserve – or are entitled – to them? Should S accept that as he is not getting any money at all, he is not entitled to it?

I do know S deserves these things, and I shall attempt to unravel why through legislation. I promise not to use the European Human Rights Act. I’m sure this would be roundly and soundly laughed at.

S could be getting an award! In the Welfare Reform Act (2012) the money gained through a person recieving Universal Credit is described as both an entitlement and a award. Award; I rather like that. It has less of a negative connotation and more of a beneficial one. Interestingly, disability and incapacity payments (or Employment Support Allowance as now is) are not mentioned here. It is not a part of Universal Credit. You can laugh here if you like. So theoretically and as per the law, does this mean that healthy people capable of work are entitled to their award from the State and that the ill and disabled are not? If so, what does this say about our society, that those least able to find and carry out work needn’t get anything at all? This is all rather puzzling.

However, there is a draft item of legislation, the Employment and Support Allowance Regulations (2013) which is now a statutory instrument. Although it is not as immediately noticeable as in the previous document, that magic word is used in relation to ESA. (Part 2, 6.2.a; (i)-(iv)). Entitlement to ESA; it actually exists! And yes, Part 3 – Conditions of Entitlement. Here we are; I’ve sold the cow and I’ll be damned if one of those magic beans hasn’t started to grow.

(Here though is where I’m going to have to admit that although I did well in the Law and Ethics module in my (paused) nursing degree, I am not immensely practised in decoding employment and support law, and am absolutely no expert. But principle established, I think?)

It’s Part 4 where things get a little easier to understand. It’s about limited capability for work. It mentions the descriptors for claimants and the 15-point system that is applied by the assessors. Part 4 seeks to establish

whether a claimant’s capability for work is limited by the claimant’s physical or mental condition and, if it is, whether the limitation is such that it is not reasonable to require the claimant to work is to be determined on the basis of a limited capability for work assessment of the claimant in accordance with this Part. 15(1)

This directly applies to S’s situation. This is the statutory law under which S is entitled to a state benefit.

Of course, being enshrined in law does not make anything a worthy or good, or even a desirable thing. I suppose in this case it depends on the extremity of your political viewpoint. But at least it does show that yes, providing he meets the criteria, S deserves – under law – this benefit. He may have failed the initial assessment, the appeal, a tribunal which was found to have so many holes in it that it could call itself a colander. (That’s the post I’m petrified to write, and is the reason why we are both quite so anxious about the forthcoming rerun). But he is entitled – that pesky word again – to his appeals, too.

Any country where a legal judgement is made and appeals cannot be lodged – isn’t that an injustice? And that is A Bad Thing. So why on earth should he not exercise that right? Otherwise, we would be one of those countries where things really are real, where injustices happen, and we’re no longer in our safe little corner of the developed world. Because any system where appeals are unable to be lodged when failures are seen are, well, just as flawed as those countries without those laws at all, and it is as likely that injustices will flourish.

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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.

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.

Sleeping.

Now, I love sleep. Sleeping is ace. I never used to like it. It was a distasteful but necessary waste of time; a way of getting from one day to another. It meant missing out on things I wanted to do, like read, or now and again when I was very low it was an unwanted, terrible thing that made the next day arrive sooner. If I didn’t sleep, tomorrow wouldn’t happen – a charm that never quite worked.

That was before. Now, sweet, uninterrupted sleep and I miss each other terribly. The problem with problems is that they can affect everything; every single aspect of your life. My problem, in the nicest possible way, is my husband, S. Or to be more accurate, the help that he is not getting. But more of that later, and not in this post.

Last night started well. We went to bed at a reasonable-ish time, listened to the radio and fell asleep with some cats on top of us, lulling us with their familiar, hot-water-bottle weights. There is the by-now-usual routine of waking up every time I roll over, aches and pains, which is frequently. But the latest pattern repeats itself as I waken at 4:30 AM to the snarling sounds of sleep apnoea. This is annoying but OK. He has a long-awaited ENT appointment next week. I nudge him, say “S, snoring…” and he groans out a “Sorry” and rolls over. Rinse and repeat.  I try to drift off, but I can’t swallow. Ugh. Dry mouth. A side-effect of my new anti-depressants. I suck a sweet and try again. But every time I try, my heart races. I combat it as best I can with pillow rearranging and slow, deep, even breathing but it runs away with me and as soon as I stop the intervention I panic. Time for another sweet. The rustling wakes S up and he says in despairing solemnity, “I’m going to sleep on the sofa; I’m sick of waking you up.” My protestations that it should be me, I’m the one who should move are ignored and he disappears.

Still no sleep! More panic, a spot of gentle thrashing and considering in a wry and forcibly objective way my current feeling of hopelessness in the future, and in the end the only thing for it is the radio. Might as well keep myself occupied and soothed rather than frustrated and lost. I briefly consider Radio 3, but I can’t listen in a panic as it sends me skywards. Instead I plump for the World Service, and after about an hour, not long after Radio 4 starts up again, I’m out. Consequently our curtains, lazy layabouts that we are, remain closed until 11AM. This is about the fourth or fifth time in the last week, with us taking turns on the sofa. I try to beat him to it, but it doesn’t always work.

I support my husband, who until last year was on Incapacity Benefit. He has crushed vertebrae, suffers from moderate to severe depression and is partially sighted. He lives in chronic pain and has memory and concentration problems due to a brain tumour that was removed some years ago. He is now on no money at all after a tribunal decision that we are fighting.  I gave up my nursing degree and now work part time, in part due to anxiety and depression that are linked to S’s condition.

The problems with sleep deprivation are well-documented. It can lead to obesity and illness as well as problems with focus and concentration, and can have a detrimental effect on mental health.

Thank you, ATOS.

We do not sleep well.