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3 Tales From Planet Social Care

September 16, 2014

I had a night away last night. It’s funny how over the past three months, my attitude to a respite night has completely changed. A Monday night off from caring used to be meeting up with friends, a few drinks and back home when the pubs shut. I guess it’s changed because Steven has been switched back on since he came off the medication – he needs much less sleep than when medicated and he talks incessantly – mostly to me with conversations that last hours about his favourite subjects – lookalikes, pop songs etc. So now, when I get a night off, I like to take myself away and have total peace and quiet. My days of painting the town red have gone and I’m now in bed by 10pm.

Tale 1. Last night I was sitting in the bar and saw an old friend. She is the mother of a guy who was at the same school as Steven, possibly two years above him. She told me about a mutual friend, whose daughter recently moved into the much lauded supported living scheme round our way. It got a lot of press interest and the council really sold the scheme to people and their families. Anyway, the friend’s daughter has been there since June and is getting increasingly concerned. There are between 25-30 flats in the block but only 12 staff at any given time to support the residents. My friend was telling me how her daughter, who prior to moving in was out and about every day of the week, can now only go out twice a week because there isn’t enough staff to cover. Also, the residents are expected to pool their personal budgets to do joint activities but even then, they are often cancelled due to lack of staff. As my friend said – “It’s the biggest con this year”. Coincidentally, on the way to the hotel I passed the land where the day centre used to be that my friend’s daughter used to attend. It is now a building site, building flats (for private sale – not for the disabled). The other sad thing about the place is that there is a small communal area that was presented as a place for people to get together when they had social events arranged. Now it seems, that residents are being herded into this space because there isn’t sufficient support to allow people to spend periods of time in their own flats. Such a shame.

2. Today, I was asked to speak at an event in a neighbouring borough about the experience of 2010/11. I got a cab from the hotel and it was one of Steven’s regular drivers. I had no idea where we were going but the driver reckoned he had been there several times. At one point, we seemed to drive straight past the community centre where I was giving the talk and the driver parked up a couple of streets away. I suddenly realised to my horror that he had brought me to the centre run by Hillingdon’s positive behaviour team. This is the place that Steven has recently decided he doesn’t want to go to anymore. One of the support workers told me last week that he’d heard from his mole that the place is closing in December – another potentially useful resource down the pan. As I sat in the car whilst the driver consulted his sat nav – one of my adversaries from 2010 came out of the building. I slid down in my seat. For one, I didn’t want to engage in pleasantries. And also, how might I respond to the question – “What are you doing around here Mark?” It would have been awkward to say that I was doing a  Q&A about how you fucked Steven and me over four years ago. It was a good morning and reinforces the hope I have that there are some damn good people working in social care and all they need is to be liberated from the strangulating system.

3. After the talk, I picked up a message from social services responding to my request for increased respite when I get the flat. Ironically, I’d been following a discussion on Twitter about Planet social care’s attitude to carers and sleep. It’s not an obvious human right but the expectations of carers to go night after night without sleep is totally ridiculous. The subject always gets turned into “short breaks for carers”, which in translation, means a couple of nights away a year. A year! Sleep deprivation is often used as a torture tool but it is quite permissible to expect carers to get by on no or 1 or 2 hours sleep a night. The message informed me that they would have to do completely new assessments – a new FACS assessment for Steven and a new carers assessment for me. Resulting in a new care plan and new personal budget. The message ended strangely – asking me if I’d kept up all the records for the personal budget that I’d been asked to keep. It ended: “These things weigh heavily when Panel are considering a change to a personal budget”. I didn’t understand that but if felt vaguely threatening. Of course, I’ve kept records – it was spelt out to me in no uncertain terms by the direct payments manager that they could withdraw the budget if I didn’t fulfil their expectations of me. And the quality of Steven’s life is at stake, so as much as it sticks in my throat, I have no choice but to be a good, obedient little boy.

That’s been my last 48 hours. I think it shows how saturating the social care world can be when you have to avail yourself of its services. One of the questions this morning was about my ongoing relationship with Hillingdon. I said that I would just love to be left to get on with things. To be trusted. To have acknowledged that I am really trying hard to do the best for Steven. As the three stories show – most of the time, that is much easier said than done.


From → Social Care

  1. Jayne Knight permalink

    I feel really tired myself tonight but I can feel your tiredness from all if that lack of sleep so much coming through in your words. Don’t they make you work hard for something they probably take for granted? I am almost draining with you at the thought of that uphill struggle again. Keep on in there Mark. It’s likely our charity cottages will be sold in next few months but if you want a free break in the meantime just let me know. Perhaps a bit far to travel but the offers there.

  2. Great blog Mark – wouldn’t surprise me if the re-assessment and monitoring costs more than the increase you (might) get in personal budget

  3. Sally permalink

    Yes. There IS a threat in that “weighs heavily” phrase. Also perhaps a warning shot? (“If you get less it will be your fault for not recording things properly. In triplicate. With a quill pen.”)
    Why do they have to be so bloody ungracious? A friendly offer to check over your records before the review to see if they are shipshape would be the way to go.
    There should be a circle of Hell for assessments which turn into assessments which turn into-the process taking so long that what was written when you started is no longer in date so the process restarts.Its become a substitute for action. Your house is on fire? We will do a fire safety assessment.Oh, the person who started assessing has left-start again!

    It would be wonderful if a reasonable amount of sleep for carers was a human right.

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