How many more Eating Disorders Awareness Weeks do we need before treatment in Wales improves?

James Downs, Mental Health Campaigner

This week is Eating Disorders Awareness Week, and this year’s campaign is aimed at highlighting how eating disorders can affect anyone.

Despite growing awareness of these life-limiting and life-threatening conditions, the perceptions of eating disorders are still overshadowed by the longstanding ‘SWAG’ stereotype – that they predominantly impact ‘skinny, white, affluent girls’.

Similarly, anorexia and severe malnutrition dominate the conversation, even though the reality is far more complex.

In reality, evidence shows that around 25% of people with eating disorders are male, poverty increases the risk of developing an eating disorder, and rates of hospitalisations are rising fast amongst minority ethnic groups.

In my work, I often deliver lectures and training to people who are surprised to learn that fewer than 10% of people with an eating disorder will be underweight, and that the most common type of diagnosis is binge eating disorder.

We clearly still have a long way to go in busting these stereotypes.

Awareness is not enough

Awareness-raising is important, especially if we want to encourage people to recognise the signs of eating disorders early on and ask for help – whoever they may be.

At the same time, as someone who has lived with an eating disorder for more than 20 years myself, raising awareness is simply not enough.

We can say “eating disorders affect everyone” as much as we like, but this means little if treatment is barely offered to anyone at all.

People like me can take part in discussions about the unique challenges faced by males with eating disorders – for example, research shows that men with anorexia are far more likely to die from their illness compared with females – but what does this achieve if the services men need in order to recover aren’t there for them?

The lack of treatment has high costs

The availability of eating disorder treatment in the UK is extremely limited, even for the most unwell patients.

Only a small minority of patients are able to access any treatment at all, leaving those who aren’t having their distress and physical health complications patched up in other parts of the health service – something I have experienced first hand.

Like many others, I’ve been put on lengthy waiting lists in England and Wales, even when severely unwell. I’ve even had referrals to eating disorder services rejected at the same time as being in and out of hospital with life-threatening electrolyte balances from malnutrition.

I moved back to Wales in 2023 as a result of being so unwell with my condition that I nearly died, on multiple occasions, but I only reached the top of the waiting list for treatment at the start of 2025.

The lack of resources for eating disorder services is a completely false economy, as the cost of providing treatment is far less than fire-fighting their untreated symptoms.

Is the Welsh Government really listening?

This February, I attended the Senedd’s Cross Party Group for Mental Health and Eating Disorders, a group I was a part of before I left Wales a decade ago.

It was great to be part of conversations about eating disorders, but many of the subjects raised were exactly the same as 10 years ago.

This brought it home to me that the failure to act isn’t just unfortunate – it’s a choice.

Investment has been made in many areas of health in the last decade, but eating disorders are still overlooked, despite their huge costs for individuals, society, and the economy.

Patients, carers, and families have been calling for investment and change for decades. The impacts on their lives and the lack of progress from our politicians is heartbreaking.

How much longer do we have to ask for more help before there is meaningful change? What will the cost be in the meantime?

Breaking the cycle

The vast majority of eating disorder studies focus on a narrow, unrepresentative group, meaning treatment approaches don’t always work for the full range of people affected.

This creates a self-perpetuating cycle of exclusion: if research doesn’t reflect reality, services won’t either, and those who don’t fit the stereotype will continue to be left behind.

As well as funding more research, we need to invest in services that work for all patients, in the here and now. A core part of this is designing services with those who need them. Including people with lived experience can help create treatment models that are more relevant and, ultimately, more effective in leading people towards recovery.

However, this requires supporting people to take part, and paying for their time. There is currently no capacity for this within the Welsh NHS Executive, despite it being such an important part of addressing the treatment gap for people with eating disorders.

People like myself are volunteering our time and skills to help, even during times when we have been waiting too long for our own treatment. This is simply not good enough – it shouldn’t be easier to help create policies for eating disorders than it is to access the treatment you need.

No more delays

We don’t have time to wait to address the crisis in care for people with eating disorders in Wales. Every year that goes by without action costs lives.

It is not enough to simply acknowledge that eating disorders affect a diverse range of people, and that we need to be aware of them.

We need to create a system that responds to awareness with action. That way we can hope for a day when we can give a more meaningful message: anyone can get an eating disorder, and everyone can access the treatment they need to recover. That day is long overdue.

James Downs is a mental health campaigner, researcher, psychological therapist and expert by experience in eating disorders.

James lives in Cardiff and can be contacted at @jamesldowns on X, Bluesky and Instagram, or via his website: jamesdowns.co.uk