Article: Each Data Point Represents a Person and Their Family

15 Dec 2025

How lived experience is shaping HQIP’s new National Audit of Eating Disorders.

It’s estimated that at least 1.25 million people in the UK live with an eating disorder. Behind every statistic is a person whose daily life, and the lives of those who love them, is profoundly affected. The emotional and physical pain impacts patients, families, partners, and friends alike. Eating disorders can also be life-threatening: Anorexia Nervosa has the highest mortality rate of any mental health disorder, underscoring the urgent need for better care and support.

The new National Audit of Eating Disorders (NAED), commissioned by HQIP and delivered by the Royal College of Psychiatrists, aims to improve identification, management, and overall quality of care for people with eating disorders. In its first year, the audit has mapped services across England to understand the breadth and depth of current care, achieving an outstanding 97% participation rate from eligible teams and publishing a Service Mapping report that outlines what has been discovered.

Crucially, the audit has placed the voices of people with lived experience at the very centre of its work, ensuring that those who use eating disorder services, and those who care for them, directly shape how data is gathered, analysed, and shared. HQIP champions patient and public involvement in all national audits within the National Clinical Audit and Patient Outcomes Programme (NCAPOP) to ensure that improvement is not just theoretical, but grounded in the realities of those who are in need of care. Their perspectives ensure that recommendations become changes that make a difference to patients and their families, and save lives.

True co-production in action

Lived experience is never an add-on; it is a key foundation of the NAED team’s work. The principle that each data point represents a person and their family underpins the entire project.

By combining clinical expertise with lived experience insight, and supported by HQIP’s expertise in patient involvement, quality and governance, the audit aims to enhance the identification, management, and quality of care for people of all ages with eating disorders. This inclusive approach ensures that future service improvements will be guided by the realities of people’s lives, and help to translate data into meaningful, person-centred actions that can improve outcomes and save lives.

Alongside representatives from many partner organisations, two Lived Experience Advisors sit on NAED’s Implementation and Steering groups. These groups provide the project team with expertise from multiple backgrounds to plan, structure, produce, and interpret the results of the audit fully and without bias. Importantly, the Lived Experience Advisors ensure that the perspectives of people with direct experience of eating disorders are consistently heard and acted upon in every key decision.

As a Lived Experience Advisor, I have been impressed with the commitment of everyone involved in the audit. As a team we have a holistic approach, as the voices of those who use eating disorder services are combined with the voices of those who deliver them. We are working in partnership with a shared ambition of improving services and outcomes for those living with eating disorders and their families.” Rebecca Regler, Lived Experience Advisor for NAED

This commitment to patient engagement is applied to all aspects of the audit’s work. Service users who are under the age of 16 are being asked what’s important to them via a survey, and the audit also has a dedicated Service User and Carer Advisory Group (SUCAG), which brings together a diverse range of people with personal or caring experience of eating disorders. Co-facilitated with the charity Beat, the SUCAG works alongside the Steering Group, as well as clinicians, researchers, and HQIP representatives who provide oversight, guidance, and ensure that patient input is meaningfully integrated throughout the audit process. The SUCAG helps shape the direction of the audit, set its metrics and ensure that it reflects issues that matter most to patients and families.

The SUCAG’s input goes far beyond consultation too. Members reviewed the clarity and accessibility of the Service Mapping report and a forthcoming data dashboard to ensure they are inclusive and genuinely useful. Their feedback even informed how findings were presented, including designing posters for eating disorder service waiting rooms with QR codes linking directly to the national report to make the results accessible to patients and their families.

What the data reveals

Exceptional engagement, successfully mapping 297 eating disorder teams across 209 service providers in England, has resulted in the most detailed national picture of eating disorder service provision to date. Still only one year in from inception, this work lays the groundwork for future audit phases and offers new insights into both strengths and challenges, from access and staffing to treatment availability and waiting times.

The audit found high levels of multidisciplinary working and strong uptake of NICE-recommended therapies, reflecting good practice across many teams. However, it also revealed significant variation in access, service configuration, and waiting times across regions and age groups.

Waiting times ranged widely. The median wait for assessment for children and young people (CYP) is 14 days, compared to 28 days for adults. CYP typically wait 4 days for treatment, whereas for adults this median wait is 42 days – and some teams report waits of up to 700 days.
Diagnostic coverage varied. While over 90% of teams treat Anorexia Nervosa, only 60% of adult teams and 66% of CYP teams treat Binge Eating Disorder (BED), and fewer than half currently treat Avoidant/Restrictive Food Intake Disorder (ARFID) – 29% of adult and 45% of CYP teams.
Workforce pressures and variation in adult versus CYP service capacity were also highlighted, with adult teams managing 89% higher patient demand than CYP teams.

These findings offer vital insight into areas requiring targeted improvement and provide a benchmark for tracking progress in the next phase of the audit.

My son has ARFID. We were only referred because we ended up in their local hospital. Even when you get into a service there is no particular pathway. In the past five years we have been in three different teaching hospitals in London, which have all taken a very different approach.” Carer

Looking ahead

The service mapping undertaken by the NAED lays the foundation for the core audit phase beginning in 2026, which will assess services against 12 national metrics. For HQIP, as we have seen with other audits as they mature, we are confident that this will be a milestone in informing changes that will lead to improved care and patient outcomes. As such, the NAED – with its patient-focused approach – will play a key role in demonstrating the continued value of national audit in strengthening quality assurance, accountability, and patient partnership across healthcare.

National audits are strongest when patients are partners. Their experiences turn numbers into understanding, and understanding into better care. By embedding lived experience at its core right from the beginning, the NAED is creating a foundation for lasting change, ensuring that data collected truly reflects the experiences and needs of patients.” Chris Gush, HQIP CEO