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Working with neurodiversity and eating disorders – a tiered training approach

Developing tiered training and resource hub to support those working with neurodiverse people with eating disorders to ensure they have better access to eating disorder services and better care.

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  • Winning idea
  • 2024

Meet the team

Also:

  • Debra Cummins
  • Eleanor Obeng-Apiah
  • South Yorkshire Eating Disorder Association
  • Speakup Rotherham

What is the challenge your project is going to address and how does it connect to the theme of 'How can we improve across system boundaries?​

There has been an increase in people who are neurodiverse that have an eating disorder (ED) (Adams et al, 2022). Specialist staff working in ED services have expressed their lack of confidence in providing the best care for such patients, due to their lack of knowledge about neurodiversity. Likewise, specialists working in neurodiversity services haven’t felt confident in supporting patients with an ED.

The project stemmed from a stakeholder event to try and improve the situation: we aim to develop tiered training and a resource hub for staff working across the health and care to provide them with the skills and knowledge to work confidently with this patient population. This involves the voluntary, independent and statutory sector, and people with lived experience designing the training.

We will ensure consistency in training delivered, improve access and quality of ED services for people with neurodiversity.

What does your project aim to achieve?

Working with experts in the clinical fields of ED/neurodiversity and people with lived experience to achieve the following:

Objective 1: People within ED services and those likely to meet patients with ED complete the relevant tier(s) of training to build their skills and confidence in working with neurodivergent people who have an ED. Initial training will build on the Oliver McGowan Mandatory Training, supplemented with co-produced videos raising awareness of the needs of neurodivergent people with ED. Higher tiers of training will be delivered by facilitators and experts by experience, going into more depth about needs of this patient population and how to support them.

Objective 2: Develop an easily accessible online resource hub to support people working with neurodivergent people with ED including case studies, toolkits and training opportunities. This will be made available in South Yorkshire and nationally.

Objective 3: Improve neurodiverse patients experience of ED services

How will the project be delivered?

Phase 1:

Form project group to outline training content, and develop online resource hub

Phase 2:

Continue to develop and collate training materials and resource hub. Recruit trainers and people with lived experience to deliver higher tiered training. Development of videos to supplement the Oliver McGowan training).

Phase 3:

Pilot training with identified organisations. Review feedback and adjust final training content. Roll training out to staff in ED and neurodiversity services.

Impact will be measured by:

–          qualitative and quantitative surveys post training and then regular intervals after training to assess how the training has improved people’s working practice.

–          use and access to the online resource hub.

–          PROMs will also be used to measure the impact on patients who identify as neurodiverse when they have interacted with staff post training (where possible)

The project will be monitored and assured via the ED Project Oversight Group

How is your project going to share learning?

The learning will be shared in a variety of ways:

–          Regional mental health and clinical network meetings

–          Participation in Q community events

–          Share via system Mental Health Learning Disability and Autism workforce and service delivery groups

Training materials and resources on the online hub will be freely available for others across the country to use

How you can contribute

  • How to strengthen the links in the bid with the theme?
  • Anyone with experience working with neurodiverse people with eating disorders to share their thoughts?
  • Anyone with lived experience of neurodiversity and eating disorders?
  • Any recommendations of companies or domains that could be used to develop an online resource hub?
  • Anyone with experience of creating open online resource hubs/websites?

Plan timeline

8 Jul 2024 Establish working group for project including representatives from different sectors
8 Jul 2024 Invite people with lived experience to the working group
29 Jul 2024 Stakeholder event - developing high-level content and mechanisms for training
5 Aug 2024 Review and develop outline of training
26 Aug 2024 Collate existing training opportunities to add to online resource hub
26 Aug 2024 Seek approval from working group from outline training
2 Sep 2024 Stakeholder engagement event - user requirements for online resource hub
9 Sep 2024 Develop first draft of tier 1 and tier 2 training
9 Sep 2024 Develop job descriptions for facilitator and experts by experience roles
9 Sep 2024 Finalise evaluation metrics
9 Sep 2024 Update ED Project Oversight Group
30 Sep 2024 Storyboard Tier 1 Video
30 Sep 2024 Work with website developer to produce draft online resource hub
30 Sep 2024 Work with working group to refine training materials
28 Oct 2024 Film the tier 1 training video
11 Nov 2024 Edit the tier 1 training video
11 Nov 2024 Recruit facilitators and expert by experience roles
16 Dec 2024 Stakeholder event - present final training materials and online hub
23 Dec 2024 Ensure that training materials and online hub meet accessibility standards
23 Dec 2024 Finalise training materials and online hub based on stakeholder feedback
30 Dec 2024 Develop booking system for training
30 Dec 2024 Develop questionnaire to measure impact of training
13 Jan 2025 User testing of online resource platform
20 Jan 2025 Train the facilitators and expert by experience to deliver training
3 Feb 2025 Update ED Project Oversight Group
10 Feb 2025 Launch online resource hub
17 Feb 2025 Pilot training with selected organisations
24 Mar 2025 Review feedback from pilot training and refine based on this
21 Apr 2025 Launch training across South Yorkshire
21 Apr 2025 Ongoing maintenance of online resource and training
9 Jun 2025 Contingency Time

Comments

  1. Thank you to those on the shortlisting panel who included our proposal on the shortlist. Hopefully members of the Q community will consider voting for us. If anyone has any questions or suggestions for improvement please comment here. Also if want to find out a bit more about why you should consider voting for us follow @JessyDouble on X - when voting opens I'll be tweeting a reason each day around why you should consider voting for us.

  2. As you already know, I really love the concept of this idea! It will benefit our service users in Sheffield and beyond greatly. Just wanted to say really pleased it’s been shortlisted!

    1. Thanks Parya - really glad to see your idea have been shortlisted too. :)

  3. Guest

    Elizabeth Pegg 13 Mar 2024

    Hi Jess,

    Have you considered using Real Wear in this Project?

  4. Guest

    Ray Hennessy 12 Mar 2024

    This is a great proposal. People working in South Yorkshire who support people who are neuro diverse and have an eating disorder have said this kind of repository would be incredibly helpful. The idea is driven by clinicians, service managers, VCS and feedback from people with lived expereince.

  5. Guest

    clare ellison 12 Mar 2024

    An excellent project and a sound logical approach. As an neighbouring Provider Collaborative I really look forward to hearing how this project develops and what we can learn and implement from it - as I already have experience of SY sharing their learning and experience to benefit as many people and systems as possible. Happy to support in any way we can too.

  6. Guest

    Ursula Philpot 6 Mar 2024

    This is a really important area of development that I am very passionate about this area, and agree co production with lived experience is so important.

    The training should focus on increasing understanding of the interplay between the conditions, and specific ways assessment, treatments and communications should be adapted. I would love to support in any way I can.

  7. Really interesting project! The research in this area is growing constantly so great to see improvements actioned into practice. I think the plans for measuring impact need to be more continuous. A dashboard with monthly data in SPC format will help to monitor improvement over time and make sure any improvements are being sustained.

    1. Guest

      Debra Cummins 6 Mar 2024

      Thank you for your comments. It would be great to catch up with your on your thoughts for measuring impact. A dashboard with monthly data in SPC format sounds like a great idea and something we will consider.

  8. Guest

    Simon Barnitt 4 Mar 2024

    This would be a much needed addition to the offer of eating disorder services, I love the idea of a compendium of good practice. We really need to understand how to support reasonable adjustments, the differences in presentation, impact, approach and outcomes for those with neurodiversity.

  9. Guest

    Marie Purdue 29 Feb 2024

    Hi Jess.  I really support this project as it is meeting needs identified by those working in this area and by people with lived experience - so should generate some great benefits.  The tiered approach sounds really positive and also your plans to work across the voluntary, independent and statutory sector, drawing on the experience of those who have accessed ED services and those working in services to design the training.

  10. Guest

    Amy Wicksteed 29 Feb 2024

    I very much welcome this plan - I think the tiered approach of having a single online location which both promotes existing information and training resources & is the access point for booking higher level specific trainings would be very valuable. It will be key that resources on the webpage are updated regularly - and that the website is easy to access on a well-developed platform (e.g. a regional ICB webpage).

    Alongside generic Autism awareness training,  I do think it is important that we look to offer specific trainings that look at the overlapping presentations of Anorexia & Neurodiversity - and in particular consider how treatment environments, communication methods and interventions may need to be adapted for this group.

    I really support plans to co-produce trainings with those with lived experience and include case studies of examples where tailored interventions / approaches have helped.  Alongside this it would be helpful for trainings to be informed with a range of MDT expertise; dietetics, psychological formulations on the impact of living with ASD within a neuro-typical world (especially when a person has been diagnosed later in life), reflections on role of sensory sensitivities / reduced interoceptive awareness in presentations, mental health act expertise, etc.

    One of our team  recently completed the Autism 'Train the Trainer' program and really rated this approach in training delivery. Some of the learning from the recently delivered NHS-E ARFID Master Class Trainings would also be useful to include (as there is marked overlap between ARFID and Neurodiversity).

  11. Guest

    Michelle fearon 29 Feb 2024

    A very exciting project that would make a significant difference in the support to our workforce to meet the changing needs of our patient population.

    I'd be interested to hear more of opportunities within this bid for paid employment for our experts by experience.  I believe that this could further improve the training offer to staff.

     

    1. Totally agree Michelle - I think the power of the higher tiered training is that it will be delivered by people with lived experience, so have definitely included this in the planned budget as well as allocating some money for supervision as very aware people need to be supported when delivering the training

  12. Guest

    Dr Julie Eversden 28 Feb 2024

    A very exciting project. Education is important for this expanding subgroup. Tier approach is very sensible. Online learning has it's place especially for providing standardized basic information to everyone, but 1 to 1 teaching and sharing of knowledge, and allowing less experienced staff to shadow more experienced staff  is invaluable. so i would suggest the face to face teaching is given a bigger chunk of the funding available.

    1. Hi Julie, Thank you for taking the time to comment and definitely agree - online learning has it's place and will be good that people can access at convenient times for them, but the real value is the face to face learning from each other and people with lived experience

  13. Guest

    Sarah Boul 28 Feb 2024

    I am very much in support of this project and appreciate the opportunity for us to utilise this space to further develop the project proposal. Neurodiversity prevalence is increasing nationally and across South Yorkshire and anything we can do to enable better care for our neurodiverse population is essential. Could the approach taken by the Oliver McGowan training help to inform this development?

    1. You must be able to read my mind - I've already got a call with Velda (SY's OMMT lead) to pick her brains and her learning from rolling out the OMMt :)

  14. Guest

    Karen Guymer 28 Feb 2024

    This looks like a great project with a well thought out approach. Improving skills and understanding of staff working with people with neurodiversity and an eating disorder will hopefully help staff develop more effective therapeutic relationships and improve outcomes for this group.

    1. That's definitely the crux of what we're trying to achieve.

  15. Guest

    Lucy Hinchliffe 28 Feb 2024

    Hi there, I think this sounds like a very much-needed training offer to improve both confidence of staff and quality of care.

    It's brilliant that this will be developed for health and care staff. My question is: will this be open to voluntary and community sector and/or education staff also?

     

    1. Yes definitely - we'd need to take a phased approach so would focus on those working directly with ED patients initially, so would include VCSE organisation like SYEDA, but the overall aim would be to roll it out across the whole of Health, Social Care and VCSE sector. And the online resource hub would be open to anyone

  16. Guest

    Jacqui Hallam 28 Feb 2024

    Hi Jess, my comments are around sustainability of the project. The hub sounds a great idea, but how will it be managed post project funding, who will manage the content etc.

    1. I think that's a really good question - it would initially be a pilot but assuming that it was successful we would be lobbying the ICS and other services within ED to support on a longer term basis

  17. Guest

    Jon Rouston 28 Feb 2024

    Looks like a great idea for a project and I like the phased approach. A question which is from a genuine place of naivety and only really struck me as I was reading (and I should have thought of before) - PROMS and people with Neurodiversity - is there any considerations for the accessibility of these or adaptations that might be required to yield meaningful results? Might be another project in itself!

    1. Hi Nicky, Thanks for the comments and questions. So this piece of work is part of a wider piece of work happening across SY which is looking at the whole eating disorder pathway - there are specific working groups focusing on the MEED pathway, AFRID Pathway and the ED workforce, so we will definitely be linking in with these groups and drawing on there expertise and may look to expand this element of the project into other areas, but our initial focus will be on eating disorders and neurodiversity. Obviously we'd like to be able to do everything, but also want to ensure that we can deliver what we say within the £40k - so have to balance our ambitions with what we can realistically do. And we had a lot of feedback from people that this was any area they feel they would benefit having additional training for

    2. Guest

      Nicky Winsor-Gray 28 Feb 2024

      Hi, Great idea to offer support to others but i do have a few concerns / comments...

      • Given the lack of a MEED service across SYICB, how would this support the existing cohort of unmonitored people?  I think that extra support when people are starting to struggle may reduce the likelihood of this risk escalating and may save lives, but I worry for the people that are already beyond this stage.
      • Over the past few years I have seen an increase in the complexities of people.  I.e. They may have other mental health issues as well as  an ED.  I think consideration needs to be given to someone holistically in order to address their needs.  Will you be looking at  the influence of other diagnosis as well as ED and neurodiversity?
      • I have also seen a rise in ARFID cases.  It seems the usual pathway of an ED approach is not appropriate.  Given that there is a correlation between ARFID and Autism, is this something you are going to support with?
    3. Really good question Jon and to be honest not one I'd considered either. I'll definitely look into that with our project group about how we ensure the outcome measures are accessible. But like you say could probably also be a project in it's own right.

  18. Great project Jess

     

    I like the focus on digging deep to try to understand what is needed before finalising the details of the project- a balance approach which will enable a coproduction approach.

    With the prevalence of Neurodiversity increasing, we need to be thinking about how all of our generic MH services can meet the needs of a neurodiverse community. Whilst this can be seen as a requirement through a reasonable adjustment lens, the more transformative approach is to ensure that all services offer a personalised approach regardless of disability or protected characteristics

     

  19. Guest

    Caroline Greenough 27 Feb 2024

    Fully support this proposal, and like the tiered approach building on already established training.

    1. Thanks Caroline - the tiered approach was really important to us, as we know that people have different levels of experience and training needs, so wanted to ensure there was opportunities for all levels

  20. Guest

    Simon Hamilton 27 Feb 2024

    I think is a really great idea for a project and much needed. I do feel there is a significant need to develop the capabilities and understanding of staff for working with this group, and I can see how this project would have a big impact on the quality of care provided locally, and how in turn this would lead to a useful national resource.

    1. Thanks for taking the time to comment - definitely agree there is a gap in the support and training for people working with this group which needs to be addressed to ensure that people with neurodiversity and an eating disorder get the same level of access and quality of care compared with other individuals

  21. Guest

    Simon Hamilton 27 Feb 2024

    I think this is valuable project that could really elevate the level of care being provided to this group of people locally. On top of that, I think the wider aspirations could lead to a much needed national resource, in this area of increasing need.

  22. Guest

    Lizzie Dodd 27 Feb 2024

    I think this is a highly valuable project with scope to improve outcomes for our young people in services.  I would like to see better joined up working with organisations such as the PEACE Pathway and adaptations made to current treatment models for AN, BN and other atypical presentations, such as disordered eating for those with ASC.

    1. Thanks for taking the time to comment and absolutely agree - I'll definitely follow up with PEACE pathway team. I would also hope that by including people from different organisations on the same training day that it would help build relationships between organisations and service

  23. Guest

    rob carter 27 Feb 2024

    As a commissioner of eating disorder services for young adults and adults in Sheffield I am very aware of the challenges that people with a neurological conditions face when experiencing an eating disorder and accessing services.  I am also aware of the difficulties experienced by those trying to provide for such people.  This project will hopefully provide a helpful insight into those challenges and in the longer term enable  persons with a neurological condition to confidently access services and those providing offer services that recognise and respond to those challenges

    1. Thanks for taking the time to comment - I think you articulate the key purpose of this initiative really well - we want to provide high quality care to all patients with Eating Disorders and we're probably not doing this as well as we could for neurodiverse people. We also want to give our workforce the confidence and skills to work with this group

  24. Guest

    Emma Price 27 Feb 2024

    This project is something that would support a wide cohort of individuals, the phased approach to support looks brilliant and something that I can see being very successful.

    1. Thanks for sharing your thoughts Emma - it's really useful. I think the beauty of this idea is that once the materials and resource hub are developed other places across the country can use them, so it's a really scalable approach

  25. Guest

    Naomi Cheshire 27 Feb 2024

    I think this is a great idea.

    I struggle with my confidence in working in this area so I would be keen to access this and support and encourage others to do so too.

    It would be great to have as a rolling programme so that everyone could access and it could be updated as evidence based practice grows

    1. Thanks for taking the time to respond Naomi - and good to hear that you think it would be useful. We're definitely planning to deliver it in the form of a rolling programme and also developing refresher courses and how we make these different and engaging, so that people aren't seeing the same thing every year and aren't as engaged in the training

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