Comments

1. 

   Elizabeth Pegg 13 Mar 2024

   Hi Jess,

   Have you considered using Real Wear in this Project?

2. 

   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.

3. 

   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.

4. 

   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.

5. 

   Parya Rostami 5 Mar 2024

   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. 

      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.

6. 

   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.

7. 

   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.

8. 

   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).

9. 

   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. 

      Jessica Anderson 5 Mar 2024

      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

10. 

    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. 

       Jessica Anderson 29 Feb 2024

       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

11. 

    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. 

       Jessica Anderson 28 Feb 2024

       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 :)

12. 

    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. 

       Jessica Anderson 28 Feb 2024

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

13. 

    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. 

       Jessica Anderson 28 Feb 2024

       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

14. 

    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. 

       Jessica Anderson 28 Feb 2024

       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

15. 

    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. 

       Jessica Anderson 28 Feb 2024

       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. 

       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. 

       Jessica Anderson 28 Feb 2024

       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.

16. 

    Helen Crimlisk 28 Feb 2024

    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

     

17. 

    Caroline Greenough 27 Feb 2024

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

    1. 

       Jessica Anderson 27 Feb 2024

       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

18. 

    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. 

       Jessica Anderson 27 Feb 2024

       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

19. 

    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.

20. 

    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. 

       Jessica Anderson 27 Feb 2024

       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

21. 

    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. 

       Jessica Anderson 27 Feb 2024

       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

22. 

    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. 

       Jessica Anderson 27 Feb 2024

       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

23. 

    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. 

       Jessica Anderson 27 Feb 2024

       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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