National Review of Eating Disorder Services: report and recommendations

How the Review was conducted

The Service Review was conducted between 16^th October 2020 and 8^th March 2021. There have been several broad overlapping phases of the review:

1. Public engagement

Gathering views and creative suggestions from the public, both people with eating disorders of all types and severities and their families, concerning their views about the current services and suggestions for improving treatment for people with eating disorders. This was done via engagement events and by online surveys.

Three engagement events were arranged via Zoom with booking via EventBrite because of the ongoing Covid-19 pandemic and associated restrictions. Information about these events was sent to all eating disorder services to distribute. We also enlisted the help of various third sector organisations to reach out to people using their services. These included Beat Scotland, SEDIG (The Scottish Eating Disorder Interest Group), The Linda Tremble Foundation, Male VoicED, SAMH, Penumbra, LGBT Youth Scotland, Enable Scotland, Scottish Trans Alliance, SWAN (Scottish women's autism network), Scottish Autism. We are very grateful to Beat Scotland who kindly set up all workshops via their Zoom account.

We set up a review Twitter account @ScotEDReview and information was regularly updated on this account. We had some information in a BBC Radio Scotland news report.

We acknowledge the difficulty in ensuring that everyone who may have been interested in contributing to this review were aware of it and are grateful to a number of organisations for their support in raising awareness of the review.

We acknowledge that online events may not be available to, or accessible to everyone. We wanted to consult as widely as possible and ensure that anyone who wanted to take part could get involved. Those not able to join Zoom events were encouraged to make contact with us.

We tried to have events in the early evening or on a weekend to ensure that people could attend without changing work or other commitments.

At each event which lasted two hours, we had a brief introduction, then used breakout rooms with smaller groups, each with two facilitators – one to scribe and one to facilitate discussion. Facilitators were mostly from outside of Scotland and not directly involved in the review. We hoped this would reduce the risk of bias from people who had experience of Scottish services. Breakout rooms were arranged for each event depending on the range of people who had signed up, for example, as follows:

• Mothers of people with an eating disorder
• Fathers of people with an eating disorder
• People with a short duration of illness
• People with a longer duration of illness

Although we had a number of males with eating disorders sign up, none attended the events. Further work needs to be done to adequately engage with men with eating disorders in reviewing and developing services.

Events took place on the following dates, each for 2 hours.

• Tuesday 24^th November 2020 at 5pm – 65 participants booked
• Thursday 26^th November 2020 at 7pm – 55 participants booked
• Saturday 28^th November 2020 at 10am – 37 participants booked

Not everyone who booked was able to attend and because of the online nature of the meetings, we unfortunately do not have an accurate list of attendees.

Events were recorded to develop a thematic analysis. Themes are provided in detail in Appendix 2.

Surveys produced in SurveyMonkey were sent to everyone who booked an event. These were also distributed via social media, via third sector originations, and via eating disorder services. Details of the survey are included in Appendix 3.

We are grateful to the following facilitators who gave their time to support the review:

• Helen Missen, FEAST board member and mother of someone with an eating disorder
• Lorna Collins, lived experience, campaigner and support worker
• Peter Missen, father of someone with an eating disorder
• Suzanne Baker, FEAST board member and mother of someone with an eating disorder
• Gemma Johns, evaluation manager Technology Enabled Healthcare (TEC) Cymru and lived experience
• Poppy Wright, research assistant at TEC Cymru
• Bridget Taylor, retired nurse, and lived experience of having an eating disorder
• Bethan Whistance, research assistant at TEC Cymru
• Jessica Williams, research assistant at TEC Cymru
• Adrian King, senior business analyst
• Emma Broadhurst, Beat Scotland
• Stephanie Harris

2. Engaging with clinicians

Gathering views and creative suggestions from clinicians across Scotland from a range of disciplines and backgrounds and services who may see people with eating disorders whether as part of or all of their practice, concerning their views about the current services and suggestions for improving treatment for people with eating disorders.

Four events were arranged via Zoom, with bookings thought EventBrite and information distributed via social media as well as via other networks, including: The Royal College of Psychiatrists in Scotland mailing list; eating disorder services; ScotFED (the Faculty of Eating Disorders of the RCPsych in Scotland); the Scottish Eating Disorder Dietitians Group; the CAMHS Eating Disorder Steering Group; the Scottish Society for Gastroenterology; via Primary Care leads; and via direct contact with the Royal College of General Practitioners in Scotland, the Royal College of Paediatrics and Child Health and the Royal College of Emergency Medicine.

We were delighted to have bookings from across all areas of Scotland, and from a wide variety of clinical backgrounds, including paediatrics, paediatric dentistry, autism services, acute medicine, intensive care medicine, general practice, school nursing, liaison psychiatry, general psychiatry and mental health services as well as from the full range of the specialist eating disorder service multidisciplinary team.

We are very grateful to a number of external facilitators who have significant experience of either eating disorder services, or other mental health services and service review and development work. As with the public workshops, we invited clinicians who do not work in Scotland to facilitate these meetings, and had two facilitators per breakout room.

• Dr Agnes Ayton, Chair of the Faculty of Eating Disorders, Royal College of Psychiatrists
• Dr Alex Thomson, Consultant Liaison Psychiatrist
• Dr Kiran Chitale, Consultant Psychiatrist in Eating Disorders
• Dr Caz Nahman, Consultant Psychiatrist in Eating Disorders
• Dr Ashish Kumar, Vice Chair, Faculty of Eating Disorders, Royal College of Psychiatrists
• Dr Andrea Brown, Consultant Psychiatrist in Eating Disorders
• Adrian King, Senior Business Analyst
• Menna Jones, National Eating Disorders Lead, NHS Wales
• Sarah Fuller, Specialist Dietitian in Eating Disorders
• Ursula Philpott, Specialist Dietitian in Eating Disorders
• Dr Michael Lim, Consultant Anaesthetist

As with the public workshops, these events were recorded, and thematic analysis is presented in Appendix 2

Following a brief introduction, participants were taken to breakout rooms which aimed to ensure a wide range of geographical and clinical backgrounds in each room. Breakout discussions lasted for around one hour prior to a 30-minute feedback session.

Events, and booking numbers were as follows:

• 27^th November 2020 – 35 participants booked
• 9^th December 2020 – 65 participants booked
• 17^th December 2020 – 63 participants booked
• 12^th January 2020 – 64 participants booked

Surveys were sent to all participants and also distributed through the networks noted above. Detailed responses are available in Appendix 4.

We were very grateful to Drs Alastair McKinlay, Francesca Moroni and Gillian Leggett, Consultant Physicians in NHS Grampian for meeting with us to discuss their particular expertise in nutrition and anorexia nervosa.

We also met with Dr Agnes Ayton, Chair of the Royal College of Psychiatrists Faculty of Eating Disorders, and Dr Phil Crockett, Chair of ScotFED, the RCPsych in Scotland Faculty of Eating Disorders to discuss the review.

3. Consultation with NHS Boards and relevant organisations

Consulting and discussions with chief executives, or chief officers and others in leadership in the 14 Health Boards.

We wrote to all Boards in November 2020 inviting them to meet with us to discuss the review and to help us think about issues that may be relevant in relation to their Board. Some meetings have had to be rearranged due to other priorities for the Boards. Meetings which have taken place, and those that are planned are noted below.

NHS Ayrshire & Arran

• John Burns, Chief Executive
• 7^th December 2020

NHS Borders

• Simon Burt, General Manager, Mental Health & Learning Disability Services
• 1^st March 2021
• NHS Dumfries & Galloway
• To be held 1^st April 2021

NHS Fife

• Carol Potter, Chief Executive
• 18^th January 2021
• NHS Forth Valley
• Postponed on 16^th February

NHS Grampian

• Caroline Hiscox, Chief Executive & Jane Fletcher, Head of Mental Health & Learning Disability services
• 16^th March 2021

NHS Greater Glasgow & Clyde

• Katrina Phillips, Head of adult services
• 17^th January 2021

NHS Highland

• Louise Bussell, Chief Officer
• 11^th January 2021

NHS Lanarkshire

• Ross McGuffie, Chief Officer, and colleagues
• 8^th December 2020

NHS Lothian

• Prof Alex McMahon, Executive Director of Nursing and colleagues
• 25^th January 2021

NHS Tayside

• Awaiting response
• NHS Orkney & Shetland
• Michael Dickson, Chief Executive
• 25^th January 2021

NHS Western Isles

• Awaiting response

In addition, we met with:

• Dr Stewart Irvine, Acting Chief Executive of NHS Education Scotland on 18^th January 2021
• Dr Jane Morris, Chair of the SIGN Eating Disorders Guideline Group on 27^th January 2021
• The Scottish Child & Adolescent Mental Health Service Eating Disorders Steering Group on 21^st January 2021
• Dr Alastair Cook, Principal Medical Officer for Psychiatry, 19^th February 2021
• The Scottish Dietitians' Eating Disorder Clinical Forum, 26^th November 2020

4. Third Sector organisations

Discussions with third sector organisations concerning their views about current services and suggestions for improving treatment for people with eating disorders, and the potential role for the third sector.

As noted earlier, we attempted to contact a wide range of charities that work in Scotland and may have contact with people who have eating difficulties or eating disorders. We invited these organisations to meet with us and met with representatives of the following organisations on 12^th January 2021 via Zoom. Further information is contained in Appendix 2.

• Supported (Formerly The Linda Tremble Foundation)
• Beat Scotland
• Scottish Association for Mental Health
• YouthLink Scotland
• Scottish Recovery Network
• Anorexia Bulimia Care

We also met separately with Andrew Radford, Chief Executive of Beat.

5. Build on the Mental Welfare Commission for Scotland's Scoping of Services

Gathering information regarding referral numbers, staffing levels and other indicators of existing services for people with eating disorders.

The Mental Welfare Commission provided detailed information on services available in each Board area (5). One of the leads of this review (SA) has previously collated data on service staffing and referral criteria. We have written to all services to attempt to confirm the information we already had and to add to this by gathering information on referral numbers, service specification etc but have had little response. Information that has been provided is detailed in the service scoping Appendix 1. We are aware that clinicians from each service attended our clinician workshops, and we also met with managers, however, we have not been able to fully complete a scoping exercise within. The short timescale of this review. It is hoped that this work can continue in future phases.

6. Consider a range of guidance

Considering a range of guidelines, Scottish Government documents, and legislation relevant to the Service Review. The following publications and reports are relevant in addition to those already mentioned above.

i. As noted, the SIGN guideline for eating disorders is currently in progress but their recommendations are not sufficiently ready to be shared and considered as part of the recommendations in this report.

ii. NICE Guideline NG69 (May 2017) Eating Disorders: Recognition and Treatment (3)

iii. NICE Quality Standard QS175 (September 2018) Eating Disorders (25)

iv. Royal College of Psychiatrists (2014) CR189. MARSIPAN: Management of Really Sick Patients with Anorexia Nervosa (2nd edn) (26)

v. Royal College of Psychiatrists (2012) CR168. Junior MARSIPAN: Management of Really Sick Patients under 18 with Anorexia Nervosa (27)

vi. Royal College of Psychiatrists (2012) CR170. Eating Disorders in the UK: Service Distribution, Service Development and Training (withdrawn from website).

vii. National Collaborating Centre for Mental Health, commissioned by NHS England (2015) Access and Waiting Time Standard for Children and Young People with an Eating Disorder: Commissioning Guide (2)

viii. Parliamentary and Health Service Ombudsman (2017) Ignoring the alarms: How NHS eating disorder services are failing patients (22)

ix. Beat (2017) Delaying for years, denied for months: the impacts on sufferers of delaying treatments for sufferers in England (28)

The full report was submitted to the Minister on 17^th March 2021.