We have the opportunity in Wales to do things differently and provide better care for people with eating disorders

James Downs, Mental Health Campaigner

When I developed a severe eating disorder over 20 years ago, there were no specialist services in Wales that could offer me treatment

In 2008, the National Public Health Service for Wales’ published the Eating Disorders Framework for Wales.

This was the start of meeting a huge gap in the care provided to patients like me, who’ve often ended up going in and out of general medical or mental health wards with life threatening health problems resulting from a lack of treatment.

Before finally being able to access the care I needed, I was described as a “revolving door patient”, with one admission after the other and huge personal costs such as dropping out of jobs and university.

Like too many others, my life was put on hold, and what life I had left revolved around my illness.

Welsh Government investment

Treatment changed all of this. Things started to improve for me when I had intensive psychological therapy, offered by newly developed specialist services for eating disorders in Cardiff.

The investment of Welsh Government in these specialist services paid off, at least in my case. I went from continuous, expensive hospital admissions before my treatment, to no admissions at all during my treatment, or for a whole decade afterwards.

Whilst services need adequate resources to deliver such intensive support, it is cheaper and less risky than the alternative, and has led to me living an enjoyable and valued life since as a campaigner, researcher, yoga teacher and therapist myself.

But what we have had in terms of investment in eating disorders services here in Wales is still not enough. It was never enough. I saw gaps in my own care, and in the treatment of those around me – especially friends who had to be admitted to hospital outside of Wales.

Eating disorders are multifaceted conditions that can impact all systems of the body, as well as the ability to function and engage in wider society.

In order to progress in recovery, patients need wrap-around support that also includes their loved ones.

Early intervention

We also need to provide early intervention, which is shown to improve outcomes and save human and financial costs down the line.

Early intervention isn’t just about reaching people at the start of illness, it is about preventing it in the first place for those who haven’t got eating problems, and about preventing things getting worse for those who do.

With a historic legacy in Wales of patients who have lived for a long time without any specialist care, we need to make sure that any developments of services don’t overlook this group.

Early intervention applies to the person who has been struggling for 20 years and comes forward for help, too.

James Downs

Investment not only needs to be proportionate to these historic population needs, it must keep up with the rapidly increasing demand on services, and a rise in disordered eating that has been notable especially amongst young people and since the pandemic.

Services need to be funded to reach groups of people they have traditionally left out, too, who might not fit stereotypes of who gets eating disorders but can be equally at risk.

NHS Wales conducted a review of the Eating Disorders Framework for Wales in 2018, led in part by people with lived experience like myself.

Many of the recommendations are yet to be implemented, but the NHS Wales Executive’s new Strategic Programme for Mental Health provides an opportunity to energise work focussed on improving services for eating disorders.

Having been asked to be involved in this work, the first signs are positive.

The Wales Eating Disorders Clinical Implementation Group are wholeheartedly committed to the principles of co-production – working meaningfully with patients and carers, and sharing power in the decisions that are made about improving their care.

A return

I recently moved back to Wales, and have returned as a patient to the eating disorders service that treated me more than a decade ago.

Being asked to contribute to the ongoing development of eating disorders services in NHS Wales has given me hope, and a sense of being valued as a patient.

This hasn’t always been the case in my experiences more recently in England, where I have encountered negative attitudes towards patients that I never experienced in my treatment in Wales.

Of course organisational cultures vary, and this is just my own experience, but it is encouraging to see respect and value for the views of people with lived experience in the current development of services.

I am immensely grateful for the treatment I’ve received in Wales.

My own experience shows how lives can be saved and transformed by investment in services, and by creating services that are based on listening to the unmet needs of patients and their families – unmet needs which too many have had to live with for too long.

Only by putting the people who need help at the heart of the process will we harness the opportunity we have now, here in Wales, to do things differently and provide better care for people with eating disorders. 

James Downs is a mental health campaigner, researcher, psychological therapist and expert by experience in eating disorders. He lives in Cardiff and can be contacted at @jamesldowns on X and Instagram, or via his website: jamesdowns.co.uk