The rapid service evaluation team (REVAL) at The University of Manchester is conducting research into the integration of diabetes and mental health services to support patients with Type 1 diabetes-related disordered eating (T1DE).

Elaine Harkness and Lucie Mills attended the fifth National Type 1 Diabetes and Disordered Eating Conference, organised by Dr Helen Partridge and her team, at the University of Hospitals Dorset NHS Foundation Trust, in partnership with JDRF UK.

Lived experience

To kick off the conference there was an inspirational and engaging talk by Lawrence Smith, who talked about his lived experience with T1DE. Lawrence recounted his T1DE journey through an engaging narrative of his personal experience, revealing the struggle of life and recovery from T1DE.

Lawrence, who was diagnosed with Type 1 diabetes in his early childhood and developed an eating disorder in his adolescence, stressed the necessity of an integrated approach to care, involving a partnership between both diabetology and psychiatry.

Lawrence was able to articulate the ‘why’ in T1DE, in a way that only a person with lived experience could. Further, his speech set the tone for the conference, reminding us all of what is at the core of our work – the patients living with T1DE.

Parliamentary inquiry

After Lawrence, there was an update from Sir George Howarth, MP for Knowsley, who provided an update on the parliamentary inquiry into T1DE launched by himself and former Prime Minister Theresa May. Coinciding with World Diabetes Day the findings from the inquiry were due to be published on Tuesday, 14 November 2023.

The inquiry heard from several witnesses including clinicians, researchers, charities, and people with lived experience. Themes in the report include: defining T1DE; lived experience; NHS experience; sector response and raising the profile of T1DE. Recommendations from the inquiry will also be published.

STEADY project

Marietta Stadler from Kings College Hospital talked about the progress of the STEADY (Safe management of people with Type 1 diabetes and EAting Disorder studY) project, an intervention study for those who are moderately ill with T1DE.

Phase one involved refining the theoretical model(s) for T1DE maintenance and recovery, and development of the STEADY intervention using a participatory action design to develop a CBT toolkit and digital health platform (STEADY-App).

Phase two involves a feasibility randomised controlled trial which is currently underway and aims to recruit 40 participants randomised to either the STEADY intervention or usual care, with follow-up at six and 12 months.

Phase three will be a funding application for a full-scale randomised controlled trial. Marietta also discussed work around the identification of different T1DE phenotypes.

The impact of the ketogenic diet

Next up was a controversial talk ‘Harmful or helpful? The impact of the ketogenic diet on eating disorder outcomes in type 1 diabetes mellitus’ by Dr Agnes Ayton and PhD student Suzanne Schneider, who also has Type 1 diabetes.

The study aims to determine whether a ketogenic diet provides a realistic long-term solution for people with Type 1 diabetes. To date the study has recruited 38 participants worldwide (15 female and 23 male), the majority of whom have followed a ketogenic diet for two to five years.

The main reasons for following the ketogenic diet were for improved HbA1c levels and to help reduce hypos. Qualitative work identified several themes:

• Fear, frustration and misinformation;
• Eat, love, play – effect on family, relationships and work;
• Searching for answers – relationships with health care professionals;
• Becoming a biohacker – taking control;
• Validity of the Diabetes Eating Problem Scale (DEPS-R) in the context of a ketogenic diet.

The next steps included follow-up of participants using the DEPS-R scale and further multidisciplinary research.

Reflective practice

Diane Turner and Sebastian Kraemer gave an insightful talk on reflective practice at the T1DE service in Kings College Hospital.

Each month one and a half hours are dedicated to reflective practice (not supervision) with an external facilitator. The space is set up as ‘the circle of equal chairs’ and follows some basic rules – no hierarchy (everyone has an equal voice); no agenda or minutes; protected time each month; confidentiality; courage, not correctness.

Breakout sessions

Lunch was followed by breakout sessions with different healthcare groups: the diabetes team; psychology and eating disorder therapists; allied health professionals; clinicians; and paediatrics.

Elaine attended the session for allied health professionals (dietitians) who had a case study around issues of risk but also discussed other issues raised by group participants.

Lucie attended the session run by psychology and eating disorder therapists which followed a similar format. Therapists and psychologists discussed a case study of a typical presentation of a patient living with T1DE, and discussed the psychological mechanisms implicated, as well as potential treatment routes.

This fascinating insight into clinical management of T1DE highlighted the importance of treating the underlying cognitions that influence development and maintenance of T1DE behaviours.

Disorders of the gut-brain axis

Tom Hollingworth from the University of Southampton talked about the GI tract in diabetes and eating disorders and about the disorders of the gut-brain axis being the elephant in the room.

Disorders of the GI tract are common in diabetes and eating disorders with the majority relating to gut motility. Disorders of gut-brain interaction are also common in patients with diabetes and eating disorders and are associated with a reduced quality of life. Treatment should focus on the underlying cause.

The clinical effectiveness of the inpatient model

The penultimate talk was given by Claire Pinder, a dietitian who talked about the clinical effectiveness of the inpatient model in Dorset for the treatment of T1DE. The purpose of the inpatient unit is to provide:

• appropriate nutrition;
• re-insulinisation;
• physical stability;
• and renourishment of the starved brain.

The aim is NOT to achieve full recovery.

Between September 2018 to June 2023 the unit had seven inpatient admissions in six patients. The mean age of patients was 31 years (diabetes duration 6 to 24 years) and the mean admission length was 16 weeks. Average blood glucose fell from 18.1 mmol/L at admission to 13.8 mmol/L at discharge. Inpatient treatment provided a gradual stepped approach to re-insulinisation and management of diabetes. On discharge, patients receive weekly therapy sessions.

T1DE in children and young people

Finally, Dr Simon Chapman from King’s College London gave a talk about T1DE in children and young people and a national network approach.

Their national survey indicated that the majority of diabetes consultants had not heard of the 2021 MEED (Medical Emergencies in Eating Disorders) guidance (50% of respondents) and over 90% of respondents reported having no pathway in place for T1DE.

The next steps were identified as establishing a T1DE network for children and young people to provide an advisory service to clinicians, MEED training for clinicians, gathering data on prevalence and patient experience and screening for eating disorders.

Wrapping up

Helen Partridge finished up by thanking all the speakers and hinted that one of the new T1DE sites might be interested in taking up the gauntlet by hosting the sixth national T1DE conference next year.

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