On the Margins

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Peter Keeling hears from April Wareham of Working with Everyone about how marginalised communities have been coping during lockdown.

birds on a wireWorking with Everyone is a group of people with lived experience of drug use and treatment who initially came together to use their expertise to improve the drug treatment and recovery systems. As time went on they realised that many problems existed way beyond drug treatment and affected other marginalised communities, and so the scope of the organisation was expanded.

April Wareham is leading research for NHS England and the University of Bradford on how marginalised communities – who are disproportionately impacted by health inequalities – have coped under COVID-19 restrictions. Over the summer, April and her team interviewed 150 people from marginalised communities, including people who use drugs, people with lived experience of the justice system, and people who are or have been street homeless.

Tell us a bit about Working with Everyone and how the research came about

‘One of the reasons we’re called Working with Everyone is, as a group of people with lived experience of drug use and treatment, we have all made different decisions about our own lives. Some of us are abstinent, and some of us aren’t. We want it to be about everyone, so if someone presents for treatment they can get what they need, whether it’s clean syringes or full blown, bells-and-whistles rehab.

When lockdown started, we knew quite quickly that we wanted to capture the stories from marginalised groups about their experiences – we’ve already worked with these groups quite a bit. NHS England approached us to do a piece of engagement work and suddenly the project grew legs when the University of Bradford also got some funding to interview refugees.’

When we talk about ‘marginalised groups’, who do we mean?

‘We work with everyone from sex workers and people who use drugs to armed forces veterans and people who are street homeless, but they have so much in common around their experiences of healthcare. We’re all really small groups so we’re much stronger if we can say together, “This is the problem”. And in any case there’s often significant overlap between these groups, as well as with refugees and travellers.

We originally went through the list of groups that had poorer health outcomes, and crossed off the ones that had existing mechanisms to interact with the system. So we were left with what looked like a very random group of people. And, I’ve got to say, I thought it would be a disaster – I thought no one would talk to us. But it wasn’t, it was really good. So we had people from the refugee community sitting next to people who have enormous criminal records and have used drugs all their life – people had so much in common around their experiences of healthcare.’

What was it like for marginalised groups’ health and wellbeing before the pandemic?

‘We have an incredible burden of both physical and mental health in these communities. People identify to us as someone who uses drugs or as a refugee, but they could very often be classed as physically disabled. And the mental health diagnoses – they are just at phenomenal rates.

Many people we spoke to weren’t even registered with a GP at the beginning of the pandemic. And people also change GPs a lot, sometimes because they are living a transient lifestyle but also because they’re having to move around to survive. We’re talking about people who will say they only approach healthcare when it’s either that or die. People have actually told us, “Everyone hates us and we know it – so we’re not going to engage”.’

Services had to adapt their support offer rapidly during the crisis. Has the greater use of telephone and digital support worked for marginalised groups? What are some of the challenges?

‘It’s been a bit variable. Some people have literally said they’ve never had so much contact with their keyworker, because an effort has been made to reach out to people. I came across one case where they had mobile data and they had the tech, and they wanted to change GP. And the GP said, “Great, we’ll send you forms so you can print them out and sign them”. Well, I might have a smartphone, I might have data, but I don’t have a printer.

At the beginning of the pandemic people were so glad to be able to get any kind of support around mental health. But people are now describing it as being a ‘holding pattern’ and they’re not able to do the serious work. I think as time goes on, people are going to be less satisfied with some aspects of this, because we know from the evidence that it’s almost irrelevant what model of drug treatment we use – the thing that really matters is the personal connection between the person and their therapist or worker.

I think those personal connections are more difficult to maintain over the internet, but they are also going to be almost impossible to build over the internet. It’s very different calling the keyworker you’ve had for ten years and having a laugh to meeting a therapist for the first time digitally.

And on the subject of the digital divide, we have to think about not just safety and privacy, but also about appropriateness. I work with people living in what you might call overcrowded conditions. So we have an entire family living in a caravan, or we have shared houses. We need to be thinking, is it appropriate for me to ask you about your gynaecological health when your children are in the room?’

What was it like conducting this research with COVID-19 restrictions in place?

‘I really underestimated how isolated and lonely people were. Interactions I thought would be a ten-minute conversation ended up taking three hours, because I was the first person they’d spoken to. It made me really reflect on how important things like volunteering or being on a service-user council are to people. And I think that’s something we need to carry forward from this. Maybe for someone working in the system, they just need four volunteers one afternoon to open up a building, and that’s pulled due to COVID – but we also need to realise that those volunteers need that afternoon themselves. It’s important to them.’

Finally, how would you like your research to inform better policies and practices in a world where some of the changes caused by the pandemic are here to stay?

‘I’d like to see the system starting to address some of its underlying assumptions. Too often people end up trying to fix someone’s life through the lens of their own life, wrongly assuming that the things that are important to them are important to others. Under lockdown, that’s became blatantly obvious. Just come and ask us what matters, don’t make the assumptions.

Peter Keeling, campaigns officer at Collective Voice
Peter Keeling is campaigns officer at Collective Voice

It’s about our priorities at both an individual and a collective level – they might not be NHS England’s priorities or the drug treatment system’s priorities. Someone might come into drug treatment and, actually, the best thing we can do for them is sort out their benefits claim. It’s about what matters to that person and also, when we’re thinking about service design and systemic change, what is important to these communities. Let’s just remember that people are people, and let them assign their own priorities.’

To find out more about Working with Everyone and this research contact April at april.wareham@yahoo.com