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We’ve cancelled all the carers. This morning I was actually looking forward to the carer coming, as the rota said it was lovely Icelandic carer and she’s awesome. Unfortunately it wasn’t her- the carer who made me really ill on Saturday turned up instead, an hour late. We hadn’t been told that we were getting her, or we would have cancelled in advance, because she makes both of us anxious, doesn’t read or follow the care plan, and doesn’t do anything because I can’t have her touch me since she made me so ill and as she won’t read the care care plan never even stayed long enough to be asked to do some basic housework.

This was the last straw. We’ve been having problems with the agency (DH Healthcare) for months, and things were only getting worse. There is no consistency- the lowest amount of different carers I’ve had is 7 in a week (we got 13 calls a week). Back when I used to have two carers in the evening, it wouldn’t be unusual to have 15 different carers. I’m autistic, so find new people difficult to deal with. They would show up randomly, or not show up at all. Carers on the rota would be replaced with someone randomly. We were never informed of any changes. We had to ban some carers because they were so bad they’d make me ill, and they’d still turn up on the rota so we’d have to cancel the call. The carers that were good and we liked we were seeing less and less of. The agency refused to tell new carers anything about me before arriving, which meant they expected two people with communication problems to do their work for them. Some of the carers were so rough they’d cause me to scream in pain. Some wouldn’t follow any instructions. Some would talk to me in such a way it would make me absolutely terrified. A lot of the carers would rush- my calls were 45 minutes in the morning, 30 minutes for a normal night call and an hour for a bath call specifically so I could take things slowly and rest when I needed to. Most of the carers would not read the care plan, so wouldn’t follow it. There was even one carer who when told what was on the care plan, actually refused to follow it, as she “didn’t do domestic” (my care plan included some basic housework, as it was to try and help Johan out as well). A lot of the carers would not take my communication difficulties into account, even when told about them- I cannot cope with open questions, but they’d persist in asking them. Quite a few would blatantly lie- to us, the agency and on the record sheet they are supposed to fill in.

There were some good carers. They’d listen to us, take things slowly, treat us as equals rather than talk down to us, try and help me maintain my dignity while helping me. They’d use their initiative- if there were dishes to be done, they’d do them without having to be asked to. We’re going to miss those carers. Unfortunately I’ve seen very little of them recently, as they very rarely appeared on my rota.

We’ve tried complaining. We’ve had lots of meetings to try and sort things out, and they never were. Johan has also been struggling recently, so hasn’t been able to complain every time something went wrong (which would have meant him having to complain about 5 times a week). I’ve tried telling my social worker, but he doesn’t seem to actually care.

The care agency mostly caters for older people. I am scared for the other people they are meant to be providing care for, as I’m a young person who isn’t afraid to complain, and there have been a lot of problems. I also have Johan to look after me, especially when they’ve just not turned up. They couldn’t meet my needs, but refused to say this and continued to send out people who were not able to deal with them. In the last week there’s been lots on the news about how home care for older people breaches their human rights (for example http://www.bbc.co.uk/news/health-15836500), and I wasn’t surprised because I’ve experienced some of it for myself.

I know that my needs are quite specific, but most of them aren’t too hard for anyone to implement. I need people who can be quiet when talking to me and working, and who don’t wear strong perfume. I need people to understand that I do have communication issues, so I’d rather they ask specific questions for what I want doing (all listed on the care plan, and I even had a list with just those printed for them). I need people to understand that because my M.E. is variable, there will be days where I’ll want more personal care, and other days when I’m too ill for any, so maybe they could go tidy the kitchen a bit instead. If for some reason I can’t cope with them being here (sometimes when I’m very ill I can’t cope with any extra noise or movement) they need to leave as soon as we tell them.

The biggest things I need though are consistency. I need a low number of total carers, so we can teach them our ways. I need them to come when they say they’re going to (at the same times each week), and to tell us if there’s going to be any changes. I also need them not to come early, as I find that causes me to panic (though they can be up to an hour late, I’d like to be told if it’ll be more than half an hour, though).

We’re currently trying to swap to direct payments, and although we were initially after a personal assistant, we’ve now realised that just going with a different care agency may work instead. My care plan is also out of date, as it was written up in May, when I was able to do a lot more for myself. Most of my personal care Johan can do, though he struggles a bit with washing my hair and plaiting (he’s gotten good at brushing it now I have a tangle teezer) and isn’t confident with the idea of brushing my teeth. He really needs help with housework though, and that’s one of the things my care package is meant to help with, so he can concentrate on looking after me.

This has got a bit long, so I’m going to leave it there, but I’m relieved that I don’t have to worry about the carers any more. Hopefully things will start to improve soon.