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Not Knowing

May 18, 2013

Yesterday, whilst waiting at the bus stop on my way home from work, I encountered the “woman on the bus” again. This is the autistic woman I met a few weeks ago who was becoming increasingly distressed, whilst her carer ignored her for the entire 20 minutes of our bus journey. I reported the incident to the council’s safeguarding team but obviously, never expected to be told of whether they were acting on my report. Anyway, yesterday was almost a repeat performance. This time she was with a male carer, who was walking several paces ahead of her and chatting away into his mobile phone. The woman looked so forlorn. She kept trying to catch him up and speak to him but he couldn’t have been less interested in her.

I’ve been so sad for the woman ever since. What must her life be like if this is the attitude of the people “caring” for her? She wasn’t treated as if she was a nuisance, interrupting the guy’s important phone call. No. it was worse than that. She was invisible. It didn’t matter what she said or did, the people she was trying to interact with didn’t even notice her.

In a way, this is too big a deal to go into. My mind starts becoming overloaded with my imagined background to this sad scene. Like, there must be a culture within the support agency that allows their workers to treat their clients with such contempt. Goodness knows what the support worker logged when he got back to the home but I bet it wasn’t “had a great walk this afternoon, chatting to all my mates and making plans for the weekend”. And then I get into: where were they going? Was it for his benefit? Was the woman only there at all because the staff needed to record some sort of activity in their log.

And what of the council and the CQC? What is their role in all of this? The council must commission this agency to supply staff to the home. Did they get the contract because they were the cheapest? How do they monitor the performance of the agencies they commission? One thing I’d be willing to bet next month’s wages on – nobody will think of asking the woman herself for feedback. My feeling is that she will be just as invisible to the commissioners and inspectors as she was to the support worker.

On the bus home, my fantasy continued. Does the woman have a family? What do they think happens to their daughter when they are not around? Perhaps, she has no family and the type of experience I’ve observed twice in the last four weeks, is her lot now for the rest of her life.

Not knowing is horrible. I cannot explain or express the huge leap of trust that is required when you hand over your vulnerable son/daughter etc to the care system. I feel blessed that we have such a good agency at the moment – they care, they are interested in Steven and their values seem to be good ones. And then a nagging voice appears – “can you be sure of that Mark”? The answer is, no, I cannot be sure and that is tough. We had a couple of dreadful agencies in the early days and I know the council still use them to work at their care homes. Perhaps that is as good as it ever can get – you never know for sure that your child is safe but you can build up your intuitive gut so that it gives you some sense of grounding.

Our housing problem is coming to ahead now and we are left with two choices: if we want to stay in this area so that Steven keeps all his friends, support staff and the places he goes to, then he will have to go back into care. If he wants to stay with me but lose all of the above, then we’ve got to move many miles away to somewhere affordable. It’s a hobson’s choice but after days like yesterday, I’m left thinking that I’d rather he have to try and cope with all those losses than be at the mercy of the agency charged with the care of the woman on the bus.

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From → Social Care

2 Comments
  1. I have a couple of friends who live in Gateshead – both autistic, wife has severe ME additionally. They get agency care and they’re generally happy – more so since the agency was changed following a CQC report and the new agency took several of the good carers from the old one. Housing is pretty cheap up there, though not sure if it’s a good place to run your business.

  2. swanarchie07 permalink

    Omg mark this is shocking twice in less than 4 weeks, I really feel for you steven has built up so much trust in his community and the people in his life are friends and you feel you can leave him thars very rare and hard to find. Your now torn and I couldn’t imagine what that must be like sorry I can’t help. All I can say is you need to do what’s best and feels right both for you and steven.

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