Changing the narrative with personal stories

Yesterday I was at an amazing conference – InterAction 2018 – hosted by Adfam and funded by Alcohol Research UK.  The mixture of speakers was fantastic, including researchers, policy people, practitioners, carers, service users, and even a social historian.  And there was an open dialogue about key, fascinating issues, conducted in a collegiate way.

There were innumerable striking stories and insights, and each person will have their highlights.  But for me, having spent the day before sat in a meeting with health colleagues and an inspector from CQC, the story that hit home hardest was Tina Williams’ description of how her son died of lung cancer on a Sunday, having only been diagnosed on the Monday – because his health needs were not even identified, let alone met, by a system that fails people who use drugs, particularly when these substances are used to self-medicate for physical and mental pain.

The point that perhaps got the strongest reaction all day was also from Tina, when she called for providers to stop promising to commissioners that they can deliver everything desired for a bargain price.  It’s not possible and gives a false sense of security to decision-makers while giving potential service users and their families inflated expectations, and the problem has become even more acute as funding has reduced.

My response – a point made at the event by Paul Hayes – would be that I think there is actually an increasing sense of realism amongst both commissioners and providers.  I don’t think there will be many commissioners who aren’t concerned about ‘market failure’, given the publicity around instances like Bristol.  I don’t think commissioners are expecting the world from providers, and I don’t think they would get promised it either.  I don’t think areas are inundated with bids for substance misuse contracts these days – any kind of choice is seen as a vindication of the model and budget – and even the big third sector providers are reluctant to bid if they don’t already have a foothold in an area.

As part of our recent recommissioning experience in Dorset, I’ve wondered how good we are at practising what we preach.  Not just us as commissioners (talking about ‘partnership working’ and ‘open and honest’ dialogue) but practitioners.  The bread and butter of substance misuse practitioners should be ‘change talk’ – and yet how good are staff at dealing with change in their own work lives?

I’ll leave that question open, but the same theory applies to the wider ‘sector’, as we kept referring to it.  The discussions suggested that we, as providers and commissioners, have reached a stage of acceptance: we agree that we as ‘the sector’ have a problem.  That’s a really positive first step – but as with all behaviour change it leads to a second question: what are we going to do about it?

There seem to be two elements to the potential ‘solution’.  The first is immediate and practical.  Let’s have realistic commissioning, and ensure our staff and services are operating the highest quality service possible, with the widest reach and impact possible.  (The word ‘possible’ here is a way of expressing my concern about capacity/funding challenges.)

But there’s also a longer-term question: how can we fundamentally change the situation from one of limited and falling funding to one of increased resources?  Of course, as Paul Hayes would be the first to acknowledge, the political context has to be right.  But if we assume our arguments won’t fall on deaf ears, what arguments should we be making?  If ‘years of plenty’ ever return, then we won’t be the only people queuing up to argue for more funding, claiming that our cause is respectable and deserving.  We might, though, find our audience to be naturally sympathetic.

At the conference, there were effectively two sets of suggestions as to how we might make ourselves heard, both of which I’ve talked about on this blog before: crime and children.  Basically, we can win funding by suggesting that people who use drugs – I would say problematically, but I think we all know that’s a distinction that’s hard to maintain when we’re talking about stigma – are mad, bad, and dangerous to know.  That is: they’re likely to commit crime so we should treat their problem to reduce crime in order to feel safer; and/or they’re a risk to children, so we should treat them to protect the next generation, who can’t protect themselves.

There’s certainly some power in these arguments.  And there is of course that risk of stigma.  Some people might even feel that this is disingenuous: arguing that people are bad and dangerous when in fact most people’s reason for making this claim is compassion and human kindness.  Another presentation at the conference – by Mike Ashton – poked holes in the foundational NTORS evaluation of treatment, saying that it overstated its case (in the terms it defined).  Should we sacrifice accuracy in order to get the right outcome?

I won’t rehearse my moral squeamishness about this here.  Perhaps I’m becoming more hardened to political realities.  (I can’t imagine an argument for funding drug treatment based on compassion would get too far in today’s political environment, as the Home Secretary defends Stop and Search.)

What I want to ask is not whether we should stretch the interpretation of some statistics.  I want to think about the broader arguments they might be put to work for, particularly with those two points in mind: how can we provide a high quality service, and how can we get services better resourced?

In that 1990s/2000s era, crime reduction (‘tough on the causes of crime’) was the narrative that statistics and evidence like NTORS were marshalled to support.  This was powerful and secured sustainable – and even increased – funding through the National Treatment Agency for a decade.  But today, crime just isn’t such a powerful political issue, partly due to the successes of drug treatment.  As Paul Hayes pointed out, the last thing you want as a civil servant in Whitehall (and, I would add, in town halls) is to be successful.  If you ‘solve’ an issue, that means you instantly lose ministerial attention – and the funding that goes with it.

But if crime isn’t much of an issue, maybe drug-related issues still are.  The wider public doesn’t seem too concerned about drug-related deaths, but at a local level they certainly are about drug-related litter.  Where I live, for example, discarded needles are a regular front page feature of the Dorset Echo.

And yet, when this is used as a reason to explain provision of substance misuse treatment services in the area, the reaction is far from positive.  Some people who would acknowledge – even shout about – the fact that an area has an issue will object to facilities being established locally.  They just want the problem – by which they mean the people – to go away.

Some would suggest this is a particular issue in seaside towns like Weymouth, where there is a narrative that problems are brought in by ‘outsiders’ who see somewhere by the sea at the end of the train line as a good place to try to escape their problems.  But I think this issue of narrative is a universal problem for local policymakers.  People acknowledge there is a problem, and would even welcome a solution – so long as the location (unlike the original problem) is ‘not in my back yard’.

So how can we make this appeal more positive?  I was feeling less than positive at this stage.

Perhaps we need to resort to the familiar chant ‘think of the children’.  And that might well have some traction with local authorities, but even if there was a ‘magic money tree’, I’m not convinced this refrain would deliver funds for treatment for people who misuse drugs, rather than support for safeguarding processes, care services, fostering and so on.  Support to get the problem (again – actually the people) away from the children.

But as I listened to the presentation by Darren Murinas from Expert Citizens, who was astonishingly articulate, engaging and insightful while describing his less-than-ideal childhood, I was reminded of a commissioner from another local authority area complaining that people have plenty of compassion for ‘the children’ in cases of abuse – but not when these children become adults with a host of issues, including substance misuse, that are all-too-predictable.

I started thinking: why can’t we mobilise that compassion to support our services?  What is it we’re doing wrong?  Or perhaps it’s a naïve idea.  As I say, a politics based on compassion seems an impossible dream at the moment.

But then Oliver Standing stood up to give his personal summary of the day.  Two points from this really hit home for me.

First, for all that we can talk about the power of value for money stats, or the evidence of randomised control trials, that’s not always how politics works.  He gave the example of the new funding for work with children of dependent drinkers, and, while acknowledging that £6m shared between several local authorities is not a very large pot of money, he emphasised that it is worth considering why there’s any money being granted at all.  Oliver suggested that the key turning point from a lobbying perspective was a personal narrative: Jon Ashworth’s speech in the House of Commons about his own childhood, which moved a government minister to tears.

Second, that over the course of the day a lot of people talked about ‘the system’.  I don’t think Oliver quite said it, but my impression was of a tension between this big, abstract idea of a ‘system’ as compared to the detailed, touching, personal narratives – and the undeniable fact that this ‘system’ is made up of a range of people trying to improve their own and others’ lives.  Oliver’s point was that if we’re looking to improve that system, then we should start with one of the classic first steps in design: empathy.  That is, whether you’re designing a health system, a phone app or a chair, you should put yourself in the shoes of the end user.

So by the end of the day, I was feeling more positive.  If we’re thinking about ‘changing the narrative’ around substance misuse, the best way to do that is with some narrative of our own, and as we shape services.  Perhaps the most powerful way of doing this, at least at the moment, isn’t necessarily value for money stats or health economics, so much as personal stories.  And those are the kind of narratives we have in abundance.  Every person has a story.  Rather than complaining that drugs policy isn’t ‘evidence-based’, as many people do, perhaps we could think about the practical point: how do we actually get that change?  The first step could be to start the public thinking less about a ‘problem’ or a ‘risk’, and more about ‘people’.  It’s harder to say ‘I don’t want those people in my town’ than it is to say ‘I don’t want this problem in my town’.

That’s an idea for the longer-term question: how we secure adequate funding for this field.  But there’s also implications for today.  Those of us who work in ‘the sector’ could maybe do with thinking like this a bit more.  The ‘sector’ is also a collection of people doing things with people to help people.  These kind of narratives can remind us of what we should be doing and why.  This isn’t just sentimentality; it’s about a different way of thinking: let’s think less about organisations, and structures, and more about the most important element of treatment: individual connections between human beings.