‘What do you love best?’
‘Tim’
‘And after Tim?’
‘Ice cream’
Anna has always liked afters.
I came in on this conversation, on my return from a review meeting about Anna’s care. At home, things seem quite simple really. Love, hate, too hot, too cold, it is difficult to keep your balance, but there you are.
But in the world of health and social care, you don’t know where you are.
So it was agreed two weeks ago that Anna was now to have NHS Continuing Care. Social Services had pushed for this and it seemed that this was a breakthrough. Certainly for us as the care would now be paid for.
What care? The decision, which is so important, must I suppose have been recorded somehow, though apparently it is not communicated in any formal way, certainly not to us, so what does it mean? The social worker says that it was agreed 24 hour care for Anna at home. For six months. (That’s a provision in case she gets better in the meantime, apparently. But if someone from health is presenting the case next time, will the argument be different?.) It was not apparently linked to a consideration of the cost, which the NHS will cover? Or will managers put a ceiling to the costs? Who will be making the decisions here? What care? Who cares?
There was no one from the Primary Care Trust at the review meeting. So it was like one of those card games, with one hand hidden.
The Home Care managers were there. I have never been sure who decides what they are able to do. The social worker says what she thinks is needed. I think that in fact they decide what they can do. We have been and are dependent on how they determine their priorities.
I don’t think that there is anyone to hold them to account for the lack of planning, with Daisy’s retirement, where , with other familiar carers away at the same time, the situation around Anna went ‘belly-up’ – one of the Home Care managers’ description, herself, and I agree.
And now the social worker seems to be involved only on a grace and favour basis. We are not her responsibility now. Her service manager has told her she is no longer responsible.
I got nervous in the meeting.
There were people there from the Mental Health Trust, the psychiatrist and the occupational therapist, our biggest ally who knows Anna best now after several years.. And they were looking worried and I know they will do what they can. But they are to do with Older People’s Services and they are from the Mental Health Trust. The responsibility now is with the PCT, and, moreover, is nothing to do with older people’s services, because Anna is too young for that. (Just look at her, you can see how young she is.) But who knows in the PCT about the needs of someone with dementia and is going to be making decisions about Anna?
I am getting very nervous.
The social worker plans to contact an independent care agency that specialises in live-in carers. By what authority I am not sure, except the social services wish to get shot of us. I think she is acting as surrogate for the none-existent representation of the PCT in this process at the moment.
I tell you, if this were an event in a group relations conference on authority and leadership, it would end in tears.
I am feeling somewhat sick.
But I will check out the website of the care agency ( looks good – well, it would, wouldn’t it) – and I will be happy to see their local assessor. This could be a very good thing. I just wish I could be more trusting of the system that will be funding and monitoring all of this.
I left the meeting, with the professionals still talking. God knows what agency politics they have to work with and other clients to think about.
Back home, I hear that Anna loves me and after me she loves ice cream.
I immediately go out and buy ice cream.
The evening carer comes in. Before going to Anna she asks about a mop and bucket. I know what this means. She would find it much easier to clean the kitchen floor than help Anna to bed.
She and I both take comfort in the easy decisions.
It is not going to be easy getting the care we need. And no easier now that it is NHS care.
Social services never said they could give us 24 hour care. NHS has agreed, so the social worker says. So who do I phone now, because I’m going out to work tomorrow morning and there is no-one to be with Anna? (The reality is that Christine is coming – family to the rescue, driving thirty miles to get here. Thank you.)
I am feeling quite ill.
All right, you’re right, there is no need to get hysterical. Of course it takes time, and if we get this agency in place, such immediate issues will get resolved. But I am experiencing for real what it is like to be in the gap between health and social services, and it is a very uncomfortable feeling. If I had wanted this feeling, I would have been a trapeze artist.
Thr carer has washed the floor, and gone to her next client. I have sat with Anna and she has gone to sleep.
I scream. You scream. We all love ice cream.