'You have to know your community'

Back in 2018, we had the special edition around the 'social cure'. It felt like a real paradigm shift in psychology. What's changed since then?

I started working in it when I was at the University of Limerick, and we were doing research on urban regeneration and community identity. That was the very beginning of social cure ideas, and it has been going on in the background for a long time. And a lot of people, particularly from clinical and health psychology, are seeing the value of it. 

Covid was a turning point - we've been saying for years that social connections are really good for you, but Covid brought it into public consciousness. The World Health Organization have their social connection task force, and it was on the agenda for the government during the pandemic.

Locally, members of the group work with loneliness initiatives in Nottingham and social prescribing. So it's moving up to public consciousness now. People are realising that the social is important in staying healthy.

Through Covid, did it pan out as you would have expected, based on the theory and the evidence?

In the beginning, you had government guidance, but there was also an alternative SAGE, and psychologists such as Steve Reicher in the media showing how we should be doing it. We were able to look at Ireland and see there was a different kind of ideology around supporting and helping. 

But coming up to the second Christmas time, I remember people taking it on themselves to look after family members, realising 'OK, this is important, we need to do this in the absence of government guidance'. Community forums sprang up, and local action that wasn't top down… it was generated by communities themselves. You could see it in action.

I remember Carl Walker writing about it for us, saying that the remarkable thing about it was that it was unremarkable. It was what people do, but perhaps hadn't been given enough credit for in the past.

Yes, there was community spirit, and 'we're all in it together'. But clearly that's papering over the divisions and the inequalities that we still see around us. It's easier to isolate, or to reach out to a community when your community has resources. We've done work around loneliness, looking at national level data, and we see that community identity will help you in all kinds of neighbourhoods, but it's much easier when you've got good local infrastructure and the support and resources that neighbours can tap into. When you don't have that, and your neighbourhood is struggling, you can still be resilient, but you're just going to get by. You're not going to get ahead as a community.

And is Nottingham quite a struggling community?

It's not an affluent city by any stretch, but like with every city, there are pockets of tremendous affluence and then other areas that have a thriving community spirit, but just don't have access to the same resources other people do. We saw that in Limerick as well. We were working in neighbourhoods where on one side of the road there were significant gang crime problems, across from those who just didn't have that, or the stigma attached to it. 

It's very difficult to come together as a group, as a community, when you know that others within your city look down on you. I remember people would say, 'Oh well, we know they think we're scumbags'. We did some work with like health providers, local authorities, and the further they were from the communities, even though they were supposed to serve them, the more they were endorsing the stereotypes about the community. That immediately puts people who provide services at odds with people who are supposed to benefit from them.

Is it important for you as a researcher to feel grounded in your local community?

Yes, I think so. Our approach to the social cure is very applied. Sometimes that term is used in a negative way, but my background was always testing theory in the real world. You need to know the groups that you're researching, and that can inform your theory in surprising ways. 

With the Limerick work, it was always thought that being in a stigmatised group was bad for you. But it can be simultaneously good and bad for you. What often happens with paradigms like this is they turn into catchphrases – 'social cure' and 'social curse' – you need to know the context of the group. That introduces a level of nuance that helps develop the theory.

When we started out in this area, there wasn't that much qualitative research, and it's becoming more and more common now. It's good to see that as well. It's more impactful to go back to the groups you're working with and say 'yes, groups are good for you. But look, we can give you specific pointers'. Social prescribing was an example of that, and the eating disorder work is another.

I'm always interested in how researchers go back into communities, and how they position themselves as experts or not. Has your perception of your 'expert position' as a researcher shifted over the years?

Definitely… it's funny, I was talking to my students about this yesterday. I teach a final-year option that's a blend of Community and Social Psychology. And I think you can tend to go in as the expert who knows everything, especially when you're dealing with communities you have no experience of. When I was working in Limerick, I had never lived in a neighbourhood like that. That opened my eyes to how people, especially if they're not used to the research process, might think you can do a lot more than you can. I remember one resident giving me a letter and saying, 'Can you give this to the Minister for Education?' I was just a postdoc. 

So research comes with a massive responsibility. You have to be aware and reflect on your agenda. Why are you doing this research? Yes, you want to make a change, but also you're answerable to funders, and you're in a job, and need to perform in that job as well. Earlier in your career, there's sometimes a tendency to over-promise, both because you want people to engage with you, but also because you're very optimistic at that point.

Another reason to avoid going in as 'the expert' is that if you don't allow people to tell you what their experience is, it's just not going to work as a partnership. And people don't want the big promises either. They just want you to be straight with them about what they can and cannot get out of being involved. It can be tricky, though, especially when you've got lots of different groups and agendas.

They don't teach you that at university. It's quite a steep learning curve… once you finish a PhD and start lecturing, you can get a bit lost.

Well, I only lasted 18 months in academia at that stage because I just couldn't get my head around how to move things to the next level, those 'soft skills' of academia.

It's really hard. I was the first person in my family to graduate from university and to go on to postgraduate study, and I had no clue. I didn't have that insight into how this world works. My PhD was in human-computer interaction, a million miles away from what I do now, and it took me a few years to figure it out. 

You start teaching, and you pour so much time into making that right, and you have to know how to be an administrator and an accountant and a counsellor to students. It shifts during your career as well. I was promoted reasonably recently, and had a period of maternity leave, and how colleagues then look at you is different as well. There are transition points in your career that you're not quite prepared for until you're in them.

Talk to me about the eating disorder work in the community.

That started as a side project as a postdoc, with Bodywhys in Ireland. They're the National Eating Disorder charity, and I was always interested in online communities. They ran successful peer support groups, and it was the early days of the 'social cure', thinking about these stigmatised groups. 

There's a tendency to mistrust online groups for people who are in recovery, because people often think of the 'pro-Ana' and 'pro-Mia' groups. When I started presenting this work, particularly at psychiatry conferences, they were like, 'You can't let these people talk to each other. ' 

I sent my first publication in this area off to a clinical journal in the States, and one of the reviewers wrote back that it was irresponsible. I've never had such a harsh review. It eventually did get published in the British Journal of Social Psychology. It was looking at how peers can support that sense of recovery identity, as opposed to what people were traditionally thinking around online groups, that it's just maintaining the illness… people concealing it and giving each other tips. It's a nice instance of where knowing the group and its content is really important.

Impact is sometimes luck. At the time in Ireland, they were developing a new model of care, and they asked Bodywhys to be the support partner, which is unusual. Our work fed back into Bodywhys' service delivery, and they would use it to convince clinicians that this is something that you need to be directing people to.

Then we came over here and did more work around types of social connections for people in recovery, and which ones were helpful, which ones weren't. We had a paper that said even pro-Ana groups can have recovery norms in there. You have to know your community. 

But we noted that NICE guidelines tended to say 'assess people's social needs', without clear guidance on how to do that. We held a knowledge exchange event, with charities and 10 NHS Trusts, and nobody had a clear idea of what social needs were. It's this idea of identity redevelopment. Who am I without this disorder? How do I integrate back into everyday life? I've lost all my networks. How do I reconnect? Or how do I build new ones? There is no real support for that in treatment. 

So we are designing some professional guidelines around how you talk to people in your care, around their connections. How do you talk about the different groups they're involved in? A lot of people have a recovery group online and an eating disorder group online. They keep a foot in both camps. The theory will say lots of groups are good for you only if they're compatible, and incompatibility is stressful for the person. But what we found with the eating disorder research is that incompatibility wasn't seen as stressful, because people felt they could compartmentalise.

'I'm having a good day and I'm recovering, I'll go there. ' 'I'm having a bad day and I feel like I need to return to my old coping behaviours, I'll go here.'

Your highest risk for relapse is in the first year following discharge from treatment, partly because you go from a very supportive environment to nothing. We want a more structured, peer-based program where people can come in and talk about those issues around, 'How do I build up, rebuild my relationships? How do I reconnect with who I am now, following this experience?'

It's interesting that a very supportive environment isn't necessarily a healthy environment.

Exactly… it depends on what the support is bringing you towards or away from. Our participants have said, 'The further along I get in recovery, the more I recognise that probably wasn't a great place for me to be'. But when you're living with this disorder for so long, it becomes part of who you are. 

A lot of people say, 'I don't know who I'll be without this'. And there's so much stigma attached that people do withdraw from you. Same for carers as well. Families will say, 'People don't really talk to us anymore. They've stepped away because of this thing that we're dealing with.'

It's exciting, but we're at the very start of it. It's a lot of work, overwhelming when you think about it.

It's such a challenging area. I've spoken to several psychologists over the years who say eating disorders are one of the hardest nuts to crack, psychologically speaking.

And I think there's such a divide between clinical recovery and personal recovery. Someone's understanding of recovery might be that they still have the thoughts, but they don't act on them, or they still have some symptoms, but their quality of life is good. Whereas DSM might say you need an absence of XYZ, you shouldn't have these symptoms. Your weight should be restored. 

We're trying to bridge that gap, because what the social cure would say is that connections can impact your health and wellbeing. We've shown, for example, that greater identification with family is associated with a reduction in eating disorder symptoms. That's not going to work for everybody – family is complicated! 

But what people think of as the softer elements of connection and groups open up all these possibilities for treatments that are a bit more complementary. Of course, you still need the clinical treatments, but doing that in the absence of everything else might limit how long people will engage with it or maintain any change. It's not a silver bullet, but it's something to look at.

Do you think that message is getting through?

Well, I do wonder whether people are now forgetting a little bit about the importance of connection and of support to health.

In my third-year class, we ask people to rank the most important factors for health. When I started doing that, 10 years ago, everyone would say it's exercise. They wouldn't recognise that it's actually social support and social integration. Then, during Covid, everyone got it right. Yesterday, they were back to diet and exercise, and it seemed like the connection bit was lost.

With social prescribing as well, it started off as an initiative around when Theresa May was Minister, around tackling loneliness. We heard that social prescribing was going to help with this big problem, and now we seem to have moved so far away from that.

How open is the medical profession to the idea of social prescribing?

They are really open. But how many people are going to their GP, and within 10 minutes, admitting to being lonely? We've done focus groups with people who are recent immigrants, or single mothers who desperately lack support and are lonely, but would be worried about reporting any mental health issues or depressive symptoms associated with that, because they're worried someone will take their children from them. There are so many barriers to it.

I think social prescribing link workers then sometimes get a bit overwhelmed, because they get sent very complex cases where maybe the GP just can't do anything else for them. Link workers then only work with them for six to eight sessions, and at that point, the person might be just about willing to go to a community group. So most health professionals are willing, but they're so strapped and stressed.

If someone like me says, 'Have you thought about X, Y and Z?', they probably have, they just don't know how to fit it in. They're doing their best. I do worry, though, that the UK pioneered that idea of tackling loneliness through social prescribing, and we're in danger of losing that.