‘Let’s step away from eating disorder stereotypes’

Dr Fiona Duffy co-leads the Eating Disorder Development Team at NHS Lothian CAHMS, and is a Senior Lecturer in Psychology at the University of Edinburgh. She tells Deputy Editor Jennifer Gledhill why rapid intervention, family support and questioning our assumptions are all vital in
turning the rising tide of eating disorder statistics…

Hospital admissions for eating disorders are up 84 per cent in the past five years, according to a Royal College of Psychiatrists analysis. Why do they keep rising?

We know that Covid-19 made a significant impact on those figures. When the pandemic hit, people from socially disadvantaged areas were much more affected, especially those with pre-existing mental health conditions. Then there was the specific way eating disorders can be exacerbated by the implications of food insecurity; none of us knew if shops would have certain foods and if we could get hold of them. 

Let's add into the mix the isolation and the way public health messages emerged. People in larger bodies were perhaps made to feel a burden to the NHS. All in all, there were a lot of stigmatising messages coming across in terms of health promotion and at the same time, services weren't functioning; we didn't have technology up and running to support clients. There were lots of people who weren't seen as quickly as we would wish, which led to them reaching crisis and being admitted.

But even pre-Covid, eating disorder referrals were rising…

Absolutely, this is not just due to Covid. We've been seeing year-on-year increases in eating disorder referrals for a long time now, and I think there are a lot of different reasons for that. There are huge amounts of stress and appearance-focused ideals on young people now; more than ever. We could also look at this through a more positive lens, in terms of greater awareness within the general population about some of the signs of eating disorders. People are picking them up early and coming into services earlier. 

When you say, 'appearance focused', is it right to point the finger of blame on social media?

There are aspects of social media which are not helpful and could be a contributing factor to people becoming ill, but eating disorders were certainly around before TikTok! Plus, on the flip side, social media has the capacity to connect young people who feel quite isolated within their communities. As clinicians, we need to think about how we can encourage people to connect on social media in a different, safer way. 

How can we encourage this?

By not telling them to 'just get off it'! Young people's lives are entwined with social media. We need to be able to support people to build the skills to protect themselves in this environment. An eating disorder will often use cultural trends to make eating restrictions socially acceptable to others. Ten years ago, we were surrounded by carbohydrate restrictions with the Atkins diet, and now we're bombarded with messages about 'clean eating'. So, I think we've just got to be aware of different presentations within eating disorder services, and not be simply 'anti' everything.

I didn't grow up with social media, and I think that one of the problems we have is clinicians who may not necessarily understand what it means to service users. This is where peer support becomes incredibly helpful: young people talking to other young people about how they safely access information and assist each other. 

What are the good news stories in eating disorder research?

There are some exciting areas being explored right now. EDGI, the Eating Disorders Genetics Initiative, is the UK's largest-ever research project on eating disorders and it's looking at understanding the role genes and environment play in development. There's still a lot of work to be done but some exciting areas are being explored and there's potential to use those findings in actual treatments. A genetic vulnerability wouldn't mean someone will get an eating disorder, but we would be better equipped to support them if issues arose.

Would genetic research also be helpful to parents and carers to lessen the stigma and shame that can sometimes attach itself to your child having an eating disorder?

Absolutely. There's been a history of family stigma and parent-bashing around eating disorders. But genetics apart, we know that the psychological implications for the whole family, not just the individual with the eating disorder, are huge. Family members play a vital role in helping to get their child out of the illness and into recovery and we know that the quicker that happens, the better the outcomes, but they need more support. An eating disorder diagnosis requires huge demands on time and resources for families. For example, we would often recommend to parents to take time off work during a child's illness, how incredibly tricky is that when faced with financial constraints? But parents and carers are so resourceful and if they can link up and support each other, suddenly you're speaking the same language, and you can hit the ground running. Charities such as BEAT and F.E.A.S.T have some great programmes which support this.

So, speed is vital. We hear so much about waiting times for people to access specialist treatment…

Speed is so important. Outcomes, particularly for anorexia are best the earlier they are treated. Some interventions are really making a difference. For example, a service called FREED; First Episode Rapid Early Intervention for Eating Disorders for 16- to 25-year-olds is great. People can self-refer and access specialised evidence-based treatment quickly. It's a service within a service and complements rather than replaces existing treatments. They're seeing good outcomes in terms of reducing inpatient admissions.

Eating disorders don't just affect white, teenage girls, but that's the stereotype. Does this get in the way of looking at the most effective treatments for every individual?

Absolutely, about 50 per cent of people first present with an eating disorder once they're over 18. If you're 40 or 50 years old and disordered eating has almost become your way of living, how do you get support? We need to step away from stereotypes around eating disorders, that they only happen to 14- and 15-year-old girls, because sometimes that reduces people's capacity to self-identify and come forward for help.

This thinking also impacts us as clinicians: if somebody in front of us has got an eating disorder but they don't fit into the mould then are they slipping through the net? We know that eating disorders can affect anyone, but this isn't reflected within clinical services, and neither is it reflected in eating disorder research. If our treatments and screenings aren't always culturally fit for purpose, who are we leaving behind? This is a question we need to constantly be asking ourselves.

It sounds like there's still a lot of work to be done around eating disorders and diversity.

Absolutely. It's a hugely complicated field and I think there's lots more work needed here in terms of how we support people on the ground clinically. Gender diverse people for example, are already in a minority stress situation to start with, and they face specific challenges and pressures that could put them at risk of developing disordered eating as they struggle to feel comfortable in their bodies. Really, the theme here is how we as clinicians ensure we are coming away from black-and-white thinking around treatments and are constantly curious about how we can adapt them to be fit for purpose.

So, as well as early intervention, research and people accessing support at the right time, where else do we need to invest time and resources?

It's incredibly important to reduce waiting times and avoid people reaching crisis points but I also think we need to have more focus on prevention. There's some great research and programmes like The Body Project; an evidence-based cognitive dissonance intervention that can be delivered in schools and communities. Right now, we don't have a programme that is nationally implemented, all we have is well-meaning people who are almost having to make up resources as they go along. We should have a robust prevention strategy across the UK, which would then actually reduce the knock-on consequences of people needing services. We wouldn't just hope for the best with programmes around sex education or drug information, why do we do this with body image? 

And I guess that brings us around to the big question of funding...

Absolutely. 1 per cent of mental health funding goes to eating disorders, yet they account for around 9 per cent of the total number of people with a mental health condition in the UK. There has recently been over £4 million investment in research funding which will hopefully have new and exciting implications for treatments in the future. 

Looking at government decision-making, what impact is the legislation to put calories on menus in England having?

I think it's made things incredibly difficult, especially as we already have a sharp rise in eating disorder referrals. Many people aren't convinced that this policy is effective for its original objective and there hasn't really been a robust risk assessment to consider the impact that it may have on those with eating disorders. The legislation has been paused in Scotland and Wales for now, but, because larger chains all have the same menus, calories are often on there. I think we know that there are other health-based behaviour initiatives which are far more effective, but we keep going back to a very one-size-fits-all approach. 

I was quite shocked to see calories on a children's menu. A two-year-old's nutritional needs are going to be very different from a 14-year-old's to start with. But also, are calories always the most important thing when it comes to thinking about nutritional intake for your child?

Could calories on menus be helpful for some people with eating disorders?

There may be some individuals who have perhaps had an eating disorder for a prolonged period, and who, because of calories on menus potentially feel able to eat out and be with people in a way that felt impossible previously. But I think the point is, we don't know.

And finally, out of every field you could have specialised in, what inspired you to work with people with eating disorders?

The truth is, I was absolutely petrified when I first encountered an eating disorders clinic. It can seem like a scary field to work in because of the significant physical comorbidities that can run alongside it. Plus, you're working with families under huge, intense levels of stress so I found it incredibly scary at first. But once I stayed, I began to find it really rewarding and decided to specialise in the field. There must be huge numbers of clinicians and researchers out there who felt like I did, and we need to support and educate people not to shy away from this extremely rewarding work.

The amazing thing for me is seeing people go on to live a fulfilling life after treatment and do the things they want to do. That's the reason I do it – to hear the good endings.