This morning I read a post by Mark Neary (whose blog I highly recommend) which highlights the hypocrisy and inaccessibility of the language of social care. I am used to jargon. I have been working in health and social care since 1993 so a lot of the language comes easy to me and I can almost forget what is jargon and what is usable by ‘normal’ people. It is posts like Marks that remind me of where our sector has lost its humanity. When we talk about ‘accessing the community’ rather than being a part of it as a part of a personal budget, we seem to have lost the idea of what community actually is.
Mark’s post got me thinking about how my life would be in the care and support plans I used to write so I’m going to imagine and put myself in that situation and see what my care plan would say. It’s not quite going to be ‘me me’. It’s going to be the me who, in 30/40 years time is living with a dementia which has affected my cognition. I’m in my 80s. I’m living alone and have no children. I’m a bit of a loner because I always have been and don’t have many friends living nearby.
Because someone in an office decides I may not be able to make decisions about what care I need, those decisions are made for me. I have a personal budget, of course, because everyone does. It isn’t a snazzy flexible one because I get confused by money and finances and am not sure I’d be able to make decisions about money management. I get my £5 and my £50 mixed up and that’s got me into all sorts of trouble at the local supermarkets. Sometimes some of the local lads offer to clear my garden. I give them £100 for an hour’s work because it seems fair to me and they are such nice lads. They always smile and they come every week. So my ‘personal budget’ is managed by the local authority.
Between 7.30am – 8am I have a carer to come and give me a shower or strip wash. The carer often doesn’t turn up until past 8.30am. I’ve always been an early riser so sometimes I try and get up and dressed within her help. I don’t like waiting till 8.30am when I’ve been up since 5am. I can’t manage the shower though and she thinks it’s a shame to change me after I’m already dressed. “Carer to help with shower or strip wash”. Sometimes I’d like a bath. There isn’t enough money for that. That’s a shame. I last had a bath four years ago. I remember it sometimes.
I sit in the lounge. The carer sometimes puts the television on before she leaves. I don’t pay much attention to it. Because I’m over 65 now, I don’t get any ‘day opportunities’. The day centres have closed and I don’t have any family to visit. I sit and watch TV. It’s ok. I don’t want enforced company so I’m not so lonely. I miss going out to the shops though. Accessing the community? That would take too long and cost too much so I just have a carer come once every fortnight to do my shopping. I write out my shopping list in advance. Mostly it’s the same from week to week. I don’t do spontaneity anymore.
The carer comes at 12pm to make my lunch. Lunch is a tuna sandwich. Lunch is always a sandwich because there isn’t time to cook. It’s always tuna because I once mentioned I liked tuna 2 years ago. Now I have tuna sandwiches every day.
“carer to prepare light lunch and cup of tea. Clean up afterwards”. Sometimes I miss coffee.
It’s Thursday which is shopping day. Shopping day is only once a fortnight. So shopping is lots of instant meals which don’t need to be prepared. I wish I could go out sometimes and potter around in the supermarket. But that would take too long. You see, my allocated hour wouldn’t be enough because I’m a bit slower on my feet. It’s tins of spaghetti hoops. Bread for the freezer. Milk for the freezer. Chocolate hobnobs. Some cheese. Lots of tuna. I like all these things but sometimes I miss sushi. “fortnightly local shop. Collect list. Leave change”.
It’s nice when it’s shopping day because it means something different happens. Mostly I just sit and watch TV. That’s my meaningful activity. I have a personal budget. Look how well self-directed support works for people like me. What do you mean it’s no different? This is innovation. I know how much my care package costs now. That’s changed my world.
I can’t wait until dinner. At 5.30pm my carer comes and makes me something ‘light’. But this time it’s a hot meal. Spaghetti hoops on toast. I like that. Sometimes I put some cheese on the top but have to be careful with the toaster. I can’t manage it on my own. At least I get another cup of tea and help to the toilet. Sometimes I miss coffee.
“5.30pm – 6.15pm Prepare dinner – leave with cup of tea. Help to toilet if necessary”.
After dinner I watch TV for a while. Usually I fall asleep.
The carer wakes me up when she comes at 9pm to assist me to bed.
So that’s what the day looks like. I get up later at the weekend. That’s nice. But I like getting up early.
Now coming back to my present self, I wonder how my own care plan would look in the language of, as Mark calls it, ‘Carespeak’.
So snapping out of reality, this is my current ‘care plan’. I wake at about 5.30am and interact constructively with other household members, which is problematic to those who don’t want to be awake at 5.30am. This is evidence of my self-centred nature and need to mind my anti-social behaviours around waking early. Sometimes I don’t have breakfast. This presents a risk to my nutrition and hydration. Occasionally I might eat an unhealthy breakfast, like a croissant. This is high in fat and could lead to unhealthy habits and putting on weight which could affect my health.
I have a shower and this means that my needs related to hygiene are met. I ensure that I wear clean clothes which are appropriate to the season. Although sometimes I judge poorly before leaving the house and this means that I may not be protected from the risk of inclement weather. I don’t own an umbrella. This is a risk as it often rains in London. I am able to meet my personal care needs.
I go to work. Now, I’m accessing the community and engaging in a meaningful activity because I have economic worth. Although sometimes it isn’t meaningful. Sometimes it’s sitting in front of a screen staring at spreadsheets. It has economic value and therefore it is meaningful. Daytime activities, I have them, you see. All is good.
I might go out after work. This means I am socially active. I am engaging with my informal support network i.e people who are not paid to be with me. I can tick off my ‘social network’ tab on my care plan. I have friends.
When I get home, I should really clean the house a bit. But I sit on the sofa and fall asleep in front of the TV. This is a risk. This means that I have not been able to meet my domestic care needs. The washing up is in the sink. I am, therefore, in a house, where there is a concern that I am not managing domestic care sufficiently. This worries those people who write care plans. All is not well.
I go to bed at a reasonable time. I don’t have any problems with sleeping and am not worried or concerned by my lack of sleep. All is well.
So why is it worth considering? These two care plans say different things but in the same way. We can look at aspirational documentation and what we should strive for. I always want to strive for better. But those who are striving, don’t forget the people like me or the future me. Don’t get carried away with the language that can actually mean less than it should. A personal budget does not mean choice. Choice does not mean choice as often as not. If we want to solve problems, we have to know the problems and how they would affect us.
It’s worth considering how are lives are and how they would be in the context of ‘care planning’. Would we plan care for others, the way we would want it planned ourselves? And if not, why not? Food for thought.