What We Do And Don’t Say

There are some issues that I feel an urge to write about then decide not to. Usually it’s because I’ve seen plenty of opinion pieces that I’d just be repeating or because there is such toxicity around the issue, that I don’t think anyone is looking to be convinced.

In the case of the article I read this morning, I also considered not saying anything because I’m part of a project that shows this kind of piece doesn’t achieve movement in the way you’d think. It is the kind of story that, generally, makes the people that it is about feel helpless, doomed and judged and those who are coming to the issue for the first time feel utterly hopeless to do anything.

So I thought I would write about the decision making process that I went through.

Today, The Guardian published a bare bones article about new statistics from University College London. Having studied the life course of 350,000 people over 42 years — researchers have suggested that people who have experience of the care system are almost twice as likely to die prematurely as the rest of the population. The research showed that whereas people in care continued to be more likely to die in their youth over the course of the 42 years, the rest of the population became more likely not to. Self harm, accidents and mental health were the attributed cause in most deaths.

The article about the data is blunt. The state decides to take people into care on the premise that things will be better than they are, then fails to make it so. People who have had that intervention are more likely to die young than those who haven’t. The money we pay in tax is what funds this and, for at least 42 years, it has resulted in people being more likely to die. Behind these statistics are people who probably had dreams about what they wanted to be when they grow up, about the kind of places they wanted to visit, about the kind of person they wanted to be.

This is a first of its kind, longitudinal piece of data. Whether it qualifies as news, however, I think depends on your proximity to the care system.

Work to understand public attitudes to Care Experienced people has shown that people hold lots of different views about people in care and the care system. That work would also suggest that talking about death, in the way that I am doing in this blog, could activate lots of different responses for people. Some of them are particularly unproductive and, of course, none of them are the truth.

Stories like the one in today’s Guardian can confirm a sense of inevitability for people — that going into care is for damaged, troubled people who, no matter the intervention, were probably never going to recover from their trauma. In contradiction, it can evoke a sense that really, people are responsible for their own choices and just need to decide to be better. Underneath all of that, it can bring people to a point of hopelessness, where there is no point even engaging with the issue because it’s just too big.

This I understand. Whether you are a member of the public, a government minister or a service provider, what on earth can you take as an action from a piece of research that says that for over forty years, a group of people have been more likely to die? At the same time, I wonder if we can do anything to cushion the blow of such a dreadful, generations long injustice. I wonder if it’s gauche to go through the process of making something so difficult more palatable so that we can meet people where they are and make change from there.

One of the challenges with the decision making is that I don’t always know where the line between not adding to the noise and being complicit with people’s oppression is. I also don’t always know if I’m avoiding saying something because setting out my stall means someone being upset.

There are lots of active stakeholders in discussion about care. Those who have experienced care, who have an insight into the realities that no one else can bring and who have had to talk at length about their own experiences so that something will be done. Those delivering care who I understand can feel run down and demotivated down by stories like this. Those who are allies who don’t want to live in a society where this kind of outcome happens in their name but mustn’t set things back with their attempts to move things forward.

I’d have preferred that the article in the Guardian to provided a deeper view. I didn’t see any mention of the rally for love that took place in Glasgow, of the Conservative party commitment to review the care system. To give people a sense that it is one part of the puzzle and that with a concerted effort, things could be turned around.

This story has came out at a time when have paused the economy, reconfigured the health service, closed schools and kept everyone but key workers at home for two months to tackle a disease that people have a 0.5–1% chance of dying from, if infected. One of the main reasons given for this course of action is that some people are much more vulnerable. Those over the age of 80 and people with underlying health conditions are much more likely to die if they contract the disease. Much of the action we are taking is about supporting the most vulnerable and allowing our health care system to do what it needs to.

The statistics published are, objectively, confirmational. It’s not an opinion that people in care are more likely to die, it is a fact. The question is, as always, what are we going to do about it?

The Coronavirus has needed a national effort and we have shown that we have it in us to think and behave completely differently when we need to. It is surely time for Care Experienced people to get the same kind of attention that unites people, creates immediate change and saves lives.