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May 2023 - Improving pathways to care for neurodevelopmental conditions and the ideal care pathway

Thursday 11 May 2023, 9.30am to 3.30pm

Jubilee Conference Centre, University of Nottingham

 

Programme schedule

9.00 Registration & refreshments

9.30 Welcome and introduction - Dr Maddie Groom and Dr Blandine French

9.45 Presentations
These presentations will focus on the risks associated with lack of training and services for neurodiversity.

  • The importance of co-produced Autism training in police custody - Dr Chloe Holloway-George
  • Problems with accessing medical services for Tourette’s - Emma McNally
  • The impact of undiagnosed ADHD/ASD - Dr Blandine French

10.45 Break

11.15 Presentations
These presentations will provide examples of solutions designed to enhance services for neurodevelopmental conditions

  • Implementing a local care pathway for children and young people with tics & Tourettes - Suzanne Rimmer
  • Delivering Effective Services for Children and Young People with ADHD: Quality Improvement Programme for Greater Manchester - Prof Prathiba Chitsabesan
  • Impactful neurodiversity research from our CANDAL research group - Dr Maddie Groom and Dr Blandine French

12.30 Lunch

13.30 Workshops - The afternoon will focus on a series of workshops to identify challenges and possible solutions to enhance care pathways for neurodevelopmental conditions

15.15 Final words:

  • Next steps for the network - Dr Maddie Groom and Dr Blandine French

15.30 Close

 

Presentation Slides

  • The importance of co-produced Autism training in police custody - Dr Chloe Holloway-George
  • Problems with accessing medical services for Tourette’s - Emma McNally
  • The impact of undiagnosed ADHD/ASD - Dr Blandine French
  • Implementing a local care pathway for children and young people with tics & Tourettes - Suzanne Rimmer
  • Delivering Effective Services for Children and Young People with ADHD: Quality Improvement Programme for Greater Manchester - Prof Prathiba Chitsabesan
  • Impactful neurodiversity research from our CANDAL research group - Dr Maddie Groom and Dr Blandine French

 

Presenters’ biographies

Dr Maddie Groom is Associate Professor of Applied Developmental Cognitive Neuroscience in the School of Medicine and Institute of Mental Health, University Of Nottingham. Maddie’s research seeks to understand the causal mechanisms of neurodevelopmental disorders with a particular interest in the co-occurrence between ADHD, autism and Tourette Syndrome. She also works with a range of stakeholders including those with lived experience and clinical expertise to increase awareness of neurodiversity and to improve assessment and treatment in healthcare services. Maddie is Director of the Centre for ADHD and Neurodevelopmental Disorders Across the Lifespan (CANDAL), a research Centre of Excellence in the Institute of Mental Health. She runs the MSc Mental Health: Research & Practice at the University of Nottingham.

Dr Blandine French works in clinical and research environments primarily with parents, children and young people with developmental disorders. She completed her PhD in Applied Psychology at the University of Nottingham, investigating the awareness and understanding of ADHD in primary care. She specifically developed and evaluated an online educational tools coproduced with GPs to increase their awareness of ADHD. This online training was endorsed by the RCGP and the leading GP training company, FourteenFish. Blandine is now working on a three year ESRC funded project looking at the economic cost of undiagnosed autism and/or ADHD. Blandine has worked with parents of children with ADHD and adult patients for the last decade, running peer support groups.

Dr Chloe Holloway-George is an Assistant Professor in Criminal Law and Criminal Justice in the School of Law, University of Nottingham. Her research specialises in autism and the law with specific focus on the rights of autistic people in society. Chloe has previously led research aimed at improving the support of autistic people in detention settings through changes to practice, policy and the custody environment. She has worked with the Nottinghamshire Autism Police Partnership to help co-produce an improved autism training package and toolkit for police custody staff and has delivered autism training for custody staff and offered advice on how police forces can make their custody suites more 'autism-friendly'. Most recently, Chloe has conducted an evaluation of the autism training and toolkit to understand how it is being used by police forces with a view to influencing the development of national neurodiversity criminal justice policy.

Emma McNally (CEO Tourettes Action) Emma is both a successful business executive and an avid campaigner for the needs of people with Tourette Syndrome. She is passionate about the cause and has worked tirelessly on improving the access to diagnosis and treatment. Emma joined Tourettes Action as the CEO in January 2022 and has a son with TS.

Suzanne Rimmer initially trained as a Physiotherapist in the NHS and specialised as a Paediatric Physiotherapist, working with children and young people with additional needs, long term conditions and disabilities. Suzanne was involved in the early development of the ‘Team Around’ approach to support collaborative working and co-ordinated support for families, which remains a key driver for her. She moved into operational management, managing frontline paediatric services across Acute and Community services as a way of integrating local provision. This involved working closely with key partners in Care and Education, along with families to improve and transform services for children and young people. Suzanne further specialised in Commissioning and Service Transformation to enable opportunities for service improvement and innovation and commissioning of services to meet local system needs and the needs of local families, co-producing with service users. With over 30 years NHS experience working to support children and young people with additional needs and disabilities, she is now working as the Head of Children’s Health and Maternity Commissioning for St Helens Place, NHS Cheshire and Merseyside ICB, with special interests in Mental Health and Emotional Wellbeing, Early Help, 0-19 services and End of Life care.

Professor Prathiba Chitsabesan is a Consultant in Child and Adolescent Psychiatry working in a large mental health and learning disability trust in Greater Manchester (Pennine Care NHS Foundation Trust). She has an interest in working with children with ADHD as well as supporting the mental health and neurodevelopmental needs of children and young people in contact with the criminal justice system. She continues to be research active as a Visiting Chair (University College London and Manchester Metropolitan University) and has been involved in a number of regional (Delivering Effective Services for CYP with ADHD, Greater Manchester Strategic Clinical Network) and national transformation programmes as advisor for NHS England.

 

Workshops

At our first network event on 11 May 2023, we conducted workshops in small groups to identify key objectives, barriers and facilitators to service delivery, and potential solutions to the challenges faced.

 

This was a great opportunity to get all new network members present to help shape future service design for people with neurodevelopmental conditions and to exchange knowledge with others in this area.

Each small group discussed a different theme, and each group was facilitated so that key points could be recorded.

 

Summary of the six groups:

What does the ideal care pathway look like?

  • Understandable and navigate-able. There should be clarity about pathway/process, transparency. Families need support following the process
  • Inter-connected and multi-disciplinary. Issues with delays or frustrations due to getting passed between department and specialists, having to tell their stories over and over again, no share patient record
  • Needs-led, not diagnosis led. A need for access to support in order to prevent a crisis, available before/without a diagnosis. Need to understand what support is required/how it should be tailored to different communities.
  • Services need to consider wider needs of people (example, sensory needs)
  • Ongoing, life-long. Assessments should be re-visited and revised to identify changing needs. More support through transition
  • Where does neurodiversity sit? Call for change in NHS-ICS and lead provider model

 

Identification to referral

  • There is a need to improve parents’ confidence and knowledge about how to identify issues with their child, and how to act on these.
  • Need to increase the diversity of people with knowledge and confidence of neurodiversity – this includes schools but also more broadly in the community (sports groups, brownies, etc.)
  • What might awareness training look like and how could this be rolled out? Universal training for all key stakeholders
  • Improved screening would be good, but this is challenging to do – not as simple as administering questionnaires. What about proactive screening of families of ND adults?

 

Referral to diagnosis

  • Need to improve (enable) parents’ understanding of the process. Roadmap at point of referral setting out process and timescale.
  • Better pre-diagnosis support. “Waiting well”. Involvement of multiple agencies (education, social care etc. ), a collective approach
  • Need for one clear, consistent person to go to
  • Needs-led support, so things can be put in place early, to prevent crisis, signposting to support/online resources
  • Is it possible to have a self-referral process?
  • Less siloed thinking, less focus on one single outcome and single pathways
  • Having a Keyworker throughout the process

 

Diagnosis and treatment

  • Treatment/support needs to be needs-led, rather than diagnosis-led. The fact that it is currently mainly diagnosis-led means that the focus on diagnosis becomes even greater, causing further issues.
  • Families need to be able to access ongoing support, not just ‘discharge and goodbye’. As people’s needs change, people need to be able to re-access services.
  • No multiple single points of access
  • Flexibility about time and diagnosis (no pressure to “be quick” due to wait-lists), ability to dip in and out of services

 

Post diagnosis support/review

  • Diagnosis/assessment should grow with the person. Ability to re-enter and contact with services
  • Need for access to a consistent person/team, someone who can be a navigator or supporter. Keyworker.
  • Broader, more holistic support is required, e.g. communication support, sensory support.
  • Clarity of responsibility – someone who has overall responsibility, to avoid issues/people falling through the gaps.
  • Empowerment through knowledge, psycho-education
  • Life stages approach, front loaded with information and support
  • Need for more Neurodiverse knowledge in all services

 

How can researchers help?

  • Better understanding of overlap/combination of Mental Health and Neurodiversity. Adapting tools to account for this and getting these tools in clinical practice
  • Improved questionnaires for screening and diagnosis, especially to suit different genders, communities. Are these sufficiently sensitive and specific in real-world settings?
  • Better optimisation of treatment – what works for who? Identifying sub-groups of people who are more likely to respond to specific treatments
  • What is driving the increase in referral
  • Broader interventions that address holistic needs, e.g. to support people at school and work.
  • More involvement of Neurodiverse people in research! And more qualitative work on their experiences

 

December 2023

Tuesday 12 December 2023, 9.30am to 1pm

Jubilee Conference Centre, University of Nottingham

 

In December, we held a local event to bring together experts in healthcare, commissioning, service design/delivery, research and lived experience in Nottinghamshire

The event was led by senior Research Fellow Dr Blandine French, CANDAL Director Dr Maddie Groom and Integrated Care Board Transformation manager Debbie Bickley. We began with presentations from ICB managers and Single point of access directors from Lincoln, Derby and Nottingham Behavioural Emotional and Health team. These presentations described good practice and innovative initiatives to improve ND care pathways.

We also presented an update on what the network has achieved since its creation last May, the quick wins, collaborations and initiatives already ongoing. We also discussed how best to continue engaging this new network for future research and policy development.

Links to all the workshop presentations can be found by clicking on presentation titles below.

Programme schedule

 9.00 Registration & refreshments

 9.30 Welcome and introduction - Blandine French

 9.45 Presentations

These presentations will focus on local initiatives and pathways.

  • Derby and Derbyshire's CYP Neurodevelopment Pathway Transformation Programme - William Galloway-Grant and Maxine Tomlinson, Children’s strategic commissioning, NHS Derby and Derbyshire
  • Lincolnshire’s Virtual Autism Hub - Emma-Kay Dominey-Hill¸ Anne-Marie Gregory and Ingrid Vlam, Lincolnshire Health and Social Care System
  • The journey to continuously adapt, improvement and meet demands - Rachel Deane, Behaviour & Emotional Health Team Manager, Nottingham City council

11.10 Break

11.30 Network update and workshop

  • Network update - Blandine French, Debbie Bickley, Maddie Groom
  • Workshop - This workshop will explore how the network can be useful in supporting different services, how to stay in touch

12.30 Networking Lunch 

 

Presentation Slides

  • Derby and Derbyshire's CYP Neurodevelopment Pathway Transformation Programme - William Galloway-Grant and Maxine Tomlinson, Children’s strategic commissioning, NHS Derby and Derbyshire
  • Lincolnshire’s Virtual Autism Hub - Emma-Kay Dominey-Hill¸ Anne-Marie Gregory and Ingrid Vlam, Lincolnshire Health and Social Care System
  • The journey to continuously adapt, improvement and meet demands - Rachel Deane, Behaviour & Emotional Health Team Manager, Nottingham City council

 

Biographies in order of the programme

Dr Maddie Groom is Associate Professor of Applied Developmental Cognitive Neuroscience in the School of Medicine and Institute of Mental Health, University Of Nottingham. Maddie’s research seeks to understand the causal mechanisms of neurodevelopmental disorders with a particular interest in the co-occurrence between ADHD, autism and Tourette Syndrome. She also works with a range of stakeholders including those with lived experience and clinical expertise to increase awareness of neurodiversity and to improve assessment and treatment in healthcare services. Maddie is Director of the Centre for ADHD and Neurodevelopmental Disorders Across the Lifespan (CANDAL), a research Centre of Excellence in the Institute of Mental Health. She runs the MSc Mental Health: Research & Practice at the University of Nottingham.

Dr Blandine French works in clinical and research environments primarily with parents, children and young people with developmental disorders. She completed her PhD in Applied Psychology at the University of Nottingham, investigating the awareness and understanding of ADHD in primary care. She specifically developed and evaluated an online educational tools coproduced with GPs to increase their awareness of ADHD. This online training was endorsed by the RCGP and the leading GP training company, FourteenFish. Blandine is now working on a three year ESRC funded project looking at the economic cost of undiagnosed autism and/or ADHD. Blandine has worked with parents of children with ADHD and adult patients for the last decade, running peer support groups.

Debbie Bickley, Transformation & Commissioning Manager for the Learning Disabilities & Autism Team within the Nottingham & Nottinghamshire ICB.

Currently leading on a review of the Children & Young Peoples Neurodevelopmental Pathway across Nottingham & Nottinghamshire along with the development of a Neurodevelopmental website for children & young people and their families/carers, offering signposting support and guidance and information along the referral pathway process.

William Galloway-Grant has worked in Health and Social Care for over 20 years starting off in the Probation Service and then moving into Substance Misuse. More recently he has been working in the NHS as a Commissioner where he’s been involved in Adult Mental Health Commissioning with a portfolio the ranged from Talking Therapies to Eating Disorder services. Currently he is the Head of Children’s Strategic Commissioning at NHS Derby and Derbyshire ICB leading on Physical Health and SEND with a significant part of his role focusing on ND Pathway Transformation

Maxine Tomlinson has a varied public sector career including political and organisational management, systems and cultural change and more recently children's commissioning. Her current work programme focuses on SEND and ND Transformation.

Emma-Kay Dominey-Hill is the Head of Learning Disability and Autism for Lincolnshire Partnership Foundation Trust (and previous Autism Programme Lead for Lincolnshire ICS). She worked with her commissioning board and local authority to secure funding for a community support offer in Lincolnshire and co-facilitated a local community work-stream to devise a functional model in rural Lincolnshire - The Virtual Autism Hub. The Hub is now in operationalisation and currently hosted within Lincolnshire Partnership Foundation Trust, where Emma maintains a supportive oversight. Emma is a Qualified Speech and Language Therapist and Advanced Sensory integration Practitioner by background and has worked in mental health and neurodevelopmental services within the UK and Ireland. She has worked with children, young people and adults within community, inpatient and secure settings over the last 22 years, in clinical and leadership roles.

Anne-Marie Gregory is Project Manager at Lincolnshire’s Virtual Autism Hub. This role includes running the grant scheme for autism support groups. She previously worked in international development. Her passion is plants and her academic background is in plant ecology and tropical agriculture. She was diagnosed with bipolar while at university, which in the days before the Equality Act meant graduate careers weren’t open to her. Twelve years ago, she realised she’s autistic and was fortunate to access diagnosis. This led her to getting involved with Lincolnshire’s Autism Partnership Board as an activist, which she found her technical skills were much needed by the public sector. Prior to this role she’s worked in autism commissioning, staff training and written Lincolnshire’s adult post-diagnostic course.

Ingrid Vlam is the Team Manager for the developing Lincolnshire Virtual Autism Hub.  The Virtual Autism Hub is being established to provide an innovative source of all age autism support to empower autistic people and their parents/carers.  The Hub will work closely with the voluntary sector and community groups to strengthen support for autistic adults, children and young people and parent/carers, increasing the range, breadth and reach of these groups.  Ingrid started as a practitioner in Social Care nearly 40 years ago and has provided direct support to autistic people in the community, which has always been an area of particular interest to her.  She has since held senior management positions in provider organisations in the voluntary sector with responsibilities for shaping strategy and best practice.

Rachel Deane has had the honour of managing the Behavioural and Emotional Health Team since November 2020 and following Nottingham City being awarded the contract via the Integrated Care Board

She has worked for Nottingham City Council for 12 years and across several teams, such as, Social Care field work, The Whole Life Disability Team and Early Help.  Rachel has been honoured to work with a diverse range of Nottingham City children, young people, their families and professionals with the aim of working together to improve outcomes, celebrating their success and achievements. 

During the Covid-19 restrictions she worked closely with key partner agencies, services and professionals to develop best practice and redesign the delivery of evidence based programmes for Early Help Services within Nottingham City. 

Rachel is passionate about improving services and their accessibility to children, young people and their parent/carers.

 

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