Eating disorders: national network minutes – December 2024

Welcome and introductions

The chair welcomed everyone to the meeting and invited those present to introduce themselves in the chat. Cathy then gave a brief summary of the work of the network over the last three months.

Specification publication. launched by the minister in early November.

NHS Inform work, pages can now be found at:

• https://www.nhsinform.scot/illnesses-and-conditions/mental-health/eating-disorders
• https://www.nhsinform.scot/illnesses-and-conditions/mental-health/eating-disorders/anorexia-nervosa/
• https://www.nhsinform.scot/illnesses-and-conditions/mental-health/eating-disorders/avoidant-restrictive-food-intake-disorder-arfid/
• https://www.nhsinform.scot/illnesses-and-conditions/mental-health/eating-disorders/binge-eating-disorder-bed/
• https://www.nhsinform.scot/illnesses-and-conditions/mental-health/eating-disorders/bulimia-nervosa/
• https://www.nhsinform.scot/illnesses-and-conditions/mental-health/eating-disorders/how-to-support-someone-with-an-eating-disorder/
• https://www.nhsinform.scot/illnesses-and-conditions/mental-health/eating-disorders/eating-disorder-resources/

Webinars, eating disorders and autism webinar went really well and attended with over one hundred people present

Communication: all network members to join in sharing information and please also generate ideas about how to share information about the network and improvement work in Scotland .

Update from lived experience panel about the LEP version of the specification

Heather and Katie presented the work that they have been doing in the lived experience panel. Noted there were only women on the panel but diversity in terms of presentations and geography. Discussed accessibility of the specification and thinking about how to pitch the specification to make sure we are not building up expectations of this standard of care being available immediately. 

The lived experience panel are developing a user friendly version of the Specification.

Specification implementation Plan

Fiona Duffy feedback on the development of the implementation plan – has so far focused on breaking down the more ambitious parts of service specification and finding out about best practice across Scotland aligned with these. In addition to think about how to plan future education seminars aligned with these examples. Potential future webinars could focus on – outcomes measures, meaningfully incorporating service users into service design, ARFID and Self referrals/FREED.

Regional meetings feedback

Katherine Morton (KM) updated the Network on two regional meetings that took place in November 2024, one with the West of Scotland and the other with South East Scotland. The purpose of the meetings was to bring together those working across the age range in eating disorders services both NHS, third sector and private providers in  these regions in order to promote idea of working together and to share what the network is doing and working on.

Meetings both quite well attended with 20-30 attendees from a range of services and health boards. Significant interest was generated by the sharing of quality improvement programmes different from boards have been working on.

Opportunity to add to the Implementation plan was provided in each meeting.

There was no formal feedback on the meetings but informally a number of attendees let KM know that they found them very helpful.

Challenge is thativen the Scottish Government can only facilitate these two individual meetings, it will be up to the regions to create local networks should they wish to do so. The Scottish Government national eating disorders netwrok will be happy to come along to any future meetings the regions may organise, should they wish to invite.

Cathy Richards (CR) also attended the North of Scotland eating dirsorders MCN to update the network and to offer the North of Scotland to add to the eating disorders Implementation plan.

CAMHS regional plans : North of Scotland CAMHS eating disorders pathway development

Susan Hynes (SH) and Siobhan Stewart (SS) shared slides updating the network on the work that has been done on the north regional CAMHS intensive home treatment service programme​ - eating disorder pathway.  

Stakeholder events were held at which a number of issues were highlighted

• recruitment and retention
• accessing notes across boundaries and health boards
• keeping staff trained using the model when there can be a low volume of cases
• there was some anxiety from Chief Executives around the funding as it is not recurring at this time

In order to alleviate the some concerns around the non-recurring funding the service programme was divided into three phases to allow some of the work to be undertaken that did not require recurring funding.

The service is to use a virtual hub and spoke model made up of expertise from across the region and will have robust parent, family and carer engagement and participation.

Proposal with the first stage is to develop a treatment pathway for young people that would have attached resources, information for clinicians and health boards. There will be one overarching pathway which is for all tier 4 patients focussing on what should every young person who has that high level of need receive when they meeting their CAMHS clinicians when they are at home and what should their families/carers receive.

Consideration has also been given to the training plan and development to ensure

• boards have good information on what staff are in region
• what training those staff have in boards currently
• what training do they actually need and how do we facilitate that cross region/board

SS shared slides on eating disorders pathway with the network.

The network was positive about the work done so far and chair requested spreadsheet to come to the next meeting of the network in April to provide a further update.

Action – Siobhan Stewart to come to April network meeting and provide a further update on this work

Intensive home support report from beat

Alex Jones (AJ) gave overview on paper BEAT have published called “Theres no place like home. The case for intensive community and day treatments for Eating

Disorders” that was published at the end of October 2024 at an event in the House of Lords.

What emerges from evidence review of the report is that these services produce equivalent treatment outcomes to more traditional inpatient forms of service. They are effective with people for whom traditional outpatient care has not been effective.

There is also evidence that inpatient care has quite a high relapse rate perhaps to do with abrupt step down in intensity on discharge. Services discussed in the report can act as a stepping stone through the process of discharge and have shown they can significantly reduce lengths of admissions and rates of readmissions.

Definition the report comes to of intensive service, patients should be able to access at least four change focused contacts taking at least three hours per week in including supervised meal support. There should be ability to adjust flexibly so that if needed patients can move to a programme providing 20 hrs of care spread over at least four days a week. Treatment programme should be provided by multidisciplinary team and be offered for at least six weeks with the ability to extend if clinically necessary.

At this time in Scotland two health boards provided services meeting that definition to both children and young people and to adults. A third health board met it for children with three further boards providing a degree of services of this kind but not to the extent it satisfies the definition. It is not suggested that all boards could introduce the necessary services to meet the definition based on their current structure and resources.

Recommendations of report are that;

• these services should be provided
• care should be personalised
• structure and service should be flexible around the needs of the individual
• there is need to improve evidence base
• would expect that introduction of these services could provide substantial budget savings these should be invested back into community and crucially early intervention services. Savings should remain in eating disorders

The Network was invited to discuss the report.

SS raised the issue of the financial impact on parents and carers of young people with eating disorders and also how some may not be able to take the time off work due to financial pressures to provide support. How do we improve the situation for parents and carers.

Carol Morgan (CM) also shared that some employers are not as supportive of parents and carers taking the time off work to support a young person with eating disorders in their care.

AJ highlighted that the next eating disorders awareness week in 2025 will include raising awareness and outreach with employers to increase understanding of both employing someone with an eating disorder and those with caring responsibilities.

Digital Update

Dawn Robb (DR) gave an overview to the network of the digital mental health programme and remote monitoring.

 

Digital mental health programme responds to increased demand for mental health services through the use of technology expanding evidence based digital therapy and self-management services. The programme will continue to support the development of a range of online self-help and management resources with NHS 24

The programme is still at an early stage development so there is opportunity to build more measures that would suit services.

The digital mental health programme is focused on building greater sustainability across the programme. There is also linkage to the innovation cluster and that continues national evaluation as well.

DR invited feedback from the network on the digital mental health programme.

Chair raised the issue of whether this is separate from existing patient information systems and if there was a way of using these measure routinely to get to collated outcome measures or is it more on an individual basis? DR shared that at this time it is on more of the individual level with work underway to have ongoing data. There is integration with SCI gateway as the PDF’s created by the system are linked to SCI Gateway.

Data update - Benchmarking ideas

Chair invited the network to share any thoughts on ways to gather data for eating disorders services.

Chair shared PHS are currently preparing a report that will include patient level data nationally which will allow us to have more information on eating disorders. However it is unlikely that this report will be ready in the next 12 months. Chair suggested it would be useful to learn more about the kind of people that are working in eating disorders service across Scotland, what happens in terms of waiting times, outcomes, what are referral criteria. It should also be kept in mind that boards are under significant pressures and any requests for data should not be too onerous.

Ellen Maloney (EM) suggested we should be doing patient experience surveys routinely, some services are but don’t have way of accessing that and gathering that nationally.

Donna Munro (DM) shared that engaging with National Benchmarking Network could prove a useful resource where one could raise data collection.

SH the network could seek in-patient data from boards as a starting point.  

Rachel Smith (RS) suggested that self-monitoring using an agreed measure and making it optional would allow some boards to get involved and start to build a culture around gathering the relevant data.

Fiona Duffy (FD) highlighted a grant from Kings College received by Karina Allen and Gerome Breen around eating disorders clinical research network. They are looking at best types of measures that eating disorders services should be using. Idea is to set up a centralised database.

We invite you to join us at the Launch Webinar for the Eating Disorders Clinical Research Network (EDCRN), taking place on 13th January 2025, 12:00-14:00pm via MS

 

Action – FD to contact Karina Allen/Gerome Breen to present a webinar on the outcome measures they are working on.

 

Action – Network to further consider data, what data is important, how do we collect it, how do we make best use of it, if we had data what kind of capacity would the network need to be able to use it predictively.

AOB and close of meeting

Thanked everyone for coming and those who shared updates with the Network.

Action – Network share with Chair anything that may be of interest about innovation, services, ideas that are happening that could be included in the next Network newsletter.

Attendees and apologies

Cathy Richards, Chair

Katherine Morton, Clinical Advisor to the Network

Fiona Duffy, Clinical Advisor to the network

Alex Jones, Beat (National Lead for Scotland)

Fiona Calder, Head of Programme CAMHS NES

Carol Morgan, Carers Support worker, Dudhope CAMHS

Alastair Douglas, Scottish Government

Diane Waugh, SupportED

Rachael Smith, NHS Grampian

Jordana Rombach, Co-production Lead, Beat 

Clara Groom, Co-production Officer, Beat

Katie Cunningham, a member of the BEAT Lived Experience of Eating Disorders Panel

Siobhan Stewart, NoS lead for CAMHS ED pathway

Heather Buchanan, member of the BEAT lived experience panel

Ellen Maloney, lived experience member and peer researcher and Edinburgh University

Susan Hynes, NHS NoS

Donna Munro Scottish Government

Hazel Elliott NHS Lothian Dietetic rep.

Apologies

Louise Johnston, NHS Grampian

Lesley Pillans, NHS Grampian OT lead

Linda Keenan, Manager, MCN for Eating Disorders - North Scotland. Representing North of Scotland

Ruairidh McKay, Consultant Psychiatrist, REDU

Iro Arvanitidou, Scottish Government