Eating Disorder Awareness Week 2023: Reflections from an Expert by Experience

These monthly blog posts by the Public Mental Health Implementation Centre (PMHIC), 'Perspectives on public mental health', aim to highlight the voices of practitioners, patients, carers, and public health experts.

Eating Disorders Awareness week was 27 February to 5 March, so we talked to Sian Ogle, Expert by Experience and PMHIC Advisory Board member, about the impact and priorities of eating disorders in the context of public mental health.

This is a personal blog. Any views or opinions expressed within the content are solely the authors and do not represent those of the author’s employer.

Tell us about yourself, and what prompted you to get involved with the work of the RCPsych?

I live in Belfast, Northern Ireland, where I work as a Communications & Engagement Officer for the Administrative Data Research Centre – Northern Ireland. I’ve got a particular interest in psychiatric epidemiology, psychoneuroendocrinology and data ethics. I’m also an occasional artist, beekeeper, and guinea pig parent.

I decided to become involved with the work of the Royal College of Psychiatrists – specifically, the Public Mental Health Implementation Centre – so I could use my personal experience of mental illness to change UK mental health policy, structures and practice approaches.

I also wanted to raise the profile of mental health and illness in Northern Ireland, which I feel is often forgotten in UK-wide conversations, despite the tremendous need.

Eating Disorders Awareness Week was 27 February to 5 March 2023. Can you tell us a bit about why this area of public mental health is important?

For a multitude of reasons. Eating disorders are estimated by Beat to impact 1.25 million people in the UK and they have the highest mortality of any psychiatric disorder. They have a devastating impact on people experiencing eating disorders, their loved ones, and society. They also cost the UK economy an estimated £9.4 billion a year.

A further reason that eating disorders are a vital area of public mental health is that they have been deprioritised in research, policy, and practice, in my opinion, due to the gender stereotypes that are associated with these illnesses. The stereotype of eating disorders is that they are a self-inflicted illness experienced by young white women, which is absolutely untrue. This false association as being solely a women’s health issue, and the accompanying misogyny, has deprioritised development in this area. This negatively impacts people with lived experience and carers of all genders, making it an area of high importance for health and gender equity efforts.

What should be three key priorities in the area moving forward?

Closing the implementation gap – the gap between the number of people experiencing eating disorders and those who can access care. Unfortunately, many people experiencing eating disorders are denied access to appropriate care until they are in crisis. This often leads to a worsening of their condition and unnecessary suffering.

Another related priority is to make sure that specific populations get equal access to appropriate treatment. For example, we know that people with an eating disorder are more likely to be neurodivergent than the general population. Yet neurodivergent people’s needs are often not being accommodated in practice and in some cases autistic people have been denied access to care because they are autistic. This is a clear violation of their rights. Equity in access simply must be a priority moving forward.  

Lastly, we need vision and leadership in the sector, accompanied by political will, sustainable funding and long-term workforce planning.

Any final thoughts or comments?

Eating disorder research, policy and practice is unequal across the regions of the UK. I have seen that Northern Ireland has a profound lack of epidemiological evidence on how many people are estimated to be experiencing eating disorders, particularly at the primary and community levels. I ask, how can services be commissioned for patients safely if we do not even have a general idea of how many people need different levels of care? Are we seeing more cases at GPs or in community mental health teams? Are we projecting that it will change in the future?

There are no evidence-based answers to those questions and, despite the efforts of those in the sector, it makes me deeply worried. I believe that one way forward to improve services, patient experience and recovery rates is to invest in research, implementation as well as public sector data analysis and utilisation.

Sian Ogle 

Expert by Experience and patient representative on the PMHIC Advisory Board

Twitter @SianOgle

For support and information:

• Northern Ireland: Eating Disorders Association NI
• Scotland: SupportED
• Wales: Beat Services in Wales
• England: Beat Services in England

Other resources:

• Eating disorders – for parents and carers – Royal College of Psychiatrists. This webpage discusses the causes of eating disorders, how to recognise them, and how to cope with a child who has an eating disorder.
• Weight, exercise and eating disorders for children and young people -Royal College of Psychiatrists. This webpage discusses some of the reasons why people worry about their weight and provides information and support on eating disorders. It is aimed at young people, their parents and carers, and schools.