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Atos summer of hell: a carer's story

My partner, now in his mid-fifties, has had mental health problems all his life. When I first met him, some six years ago, he was 'the best' he had been in decades, which just goes to show how relative 'well/good/best' are.

Our day-to-day life, on the whole, is a permanent negotiation, not necessarily always overt or articulated, between us and the rest of the world – majority of the 'exterior' activities depend very much on whether my partner feels well enough to actually go out and do the shopping on his own, or go out and talk to people we know or total strangers.

 

This condemnation of the genuinely vulnerable people has been making my blood boil for over a year now. We have internet at home, and have been keeping a fairly close eye on mainstream media, the government's outrageous proclamations, decisions etc, as well as on the growing dissent against this criminality. Because giving millions to your rich banker chums while declaring ill people are just lazy is simply criminal.

 

One of our neighbours was the first ATOS 'victim' we know personally – when she first told us about the changes to her benefits, we tried to be as supportive as we could, but her GP wasn't, which seemed to have clinched it. Our neighbour, also with a history of mental health problems, got 0 points on mental health problems and was declared fit for work.

 

So me and my partner sat waiting for the letter. Trying not to worry too much ahead of it but not doing a good job of it, knowing that a 'computer says no' decision would wreck our lives for good.

 

The letter eventually arrived some time in May I think, and it was only a letter to tell us a form will follow during the next six weeks, plenty of time for stress to develop. And then the form arrives and pretty much everything I knew, everything I thought beforehand went out the window. The form has 'guilty' written all over it, it's the ultimate violation of who you are, because you're guilty, you're a lazy scum and scrounger, prove your innocence to us who don't know you, have never met you and will never get to really know you, go on, if you fill in the form using your own hands, you should clearly get out and earn your living...

 

We buried our heads in the sand for a couple of weeks, me thinking all the while I should write a letter myself, to attach to it, and tell them exactly what it feels like when you have to keep checking that your partner has not fallen asleep in the bath every day, or the elaborate mental arithmetic you do every day, working out whether your partner appears well enough to do simple things around the flat or outside, or just how much time you spend adjusting the 'what needs to be done' to fit in with your partner's permanently disturbed sleep pattern, or how you, also only human, can never ever be sure just how much the man you love is hurting as sometimes there aren't words for it.

 

We filled the form and we sent the form back. And then we sat and we waited. And waited. Until, in August, I believe, we got a letter telling us to come for the assessment at 9am. So I phoned immediately, to change the time of the appointment, but they couldn't talk to me without my partner being present. So we phoned again, when my partner was awake, only to be told we would have to phone again, together, the following week, as the supervisor/manager was not there at the time. And we did as we were told. So it took three calls to have the appointment changed to what we had actually already asked for in the form itself.

 

All the while, and I can only see the pattern now, on hindsight, my partner's mood was slowly getting worse. His GP asked we come for an appointment, as the GP received a letter asking him to write a report on my partner's current condition. My partner started focussing on random, totally minor things, trying to make a big issue out of them, and I never picked up on it, or chose to ignore them, not recognising them as 'symptoms' if you like. And then, a few days before we were due to go and see his GP, my partner had an episode and started throwing things around, breaking a phone, his keyboard and damaging his desk. This had only happened before - the first time it happened, I'd called the ambulance, who came along with the police and we all ended up going up to King's A&E as Maudsley doesn't have emergency support any more. I don't like getting the police involved, being ill is not a crime, and their presence tends to antagonise rather than help. I forget what happened the other few times.

 

This time, I was as distressed as he was, called Maudsley PALS who had their answerphone on and never got back to me, called his GP, and cried to doctor on call who was very reluctant to come and see my partner at home, as I couldn't predict whether my partner would be physically violent towards the GP or me for that matter. My partner eventually managed to calm down a little and we agreed to leave it until we see his GP later in the week.

 

The GP listened and wrote the report. And then we sat and waited again. It was only at this point that the reality of it all truly, fully hit me, and my mind was a bundled mess of 'What if they do think he's fit for work?' 'How would we actually live through the appeal?' 'How would we eat for eight months, a year, during the appeal?' 'Is there actually any support to people going through this?' And this was haunting me, making it extremely difficult to concentrate on anything much.

 

Eventually, another brown envelope pops through our door and lo and behold we don't have to come to the assessment. My partner was asleep at the time while I literally, physically, jumped in the air, relieved, then paced around the living room wondering if I should immediately wake him up to tell him, then cried as the nightmare was finally over. For the time being, at least, as the letter's final paragraph reminds us:

 

This does not mean you will not be asked to attend for an examination again in the future., but on this occasion, it has been found unnecessary.

I apologise for any inconvenience caused.

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