Read the December newsletter
Dear Network members,
It has been a busy year since the network launched in May 2023!We have forged new collaborations and made progress on several of our primary aims. This newsletter has been designed to update you on all the network activities and highlight our upcoming initiatives.
Developing the ideal pathway to careAt our launch event in May, we ran workshops with key stakeholders in the commissioning, design and delivery of care pathways for children, young people and adults with neurodiverse conditions. Many thanks to all who attended and engaged in the workshops – your thoughts and suggestions were so valuable!
This infographic summarises the outcomes of the workshops which focused on the key question:
Click on image to see in full screen.
Several factors were identified as being crucial to an ideal pathway to care. We will use these as a starting point for initiating improvements to care pathways in Nottingham & Nottinghamshire.
Implementing change in the care pathwaysDebbie Bickley, Transformation & Commissioning Manager from the Nottingham & Nottinghamshire Integrate Care System, has made great strides with taking the ‘ideal pathway’ forward, working with providers in identifying and implementing “quick win” system changes and improvements to support in the reduction in wait times for families.A key point to emerge from the workshops was ‘Clarity’ about the process for families, healthcare professionals and care providers. Debbie has worked with our local service providers to create family-friendly schematics showing how the pathways work currently. This will form the basis of better communication with families. It also provides a clear guide for healthcare professionals and other stakeholders and a starting point for change.
Working with our network steering groupWe want to ensure the network is delivering the best outcomes and meeting our key aims. To help achieve this we have now created a local steering group comprising 20 representatives from all key services and groups in Nottingham and Nottinghamshire. The steering group met in September for a full morning’s discussion on how best to develop solutions to the challenges of changing the current pathways.
We are currently setting up surveys for Single Point of access in Nottingham City and Nottinghamshire county to assess parents’ experiences of accessing care pathways for their neurodivergent child. The surveys will be launched in January 2024 and we aim to present a summary of the data by Mid 2024. The findings from the survey will inform further changes to how information is communicated to parents, and the redesign of local pathways.We are also developing family friendly description of each local pathway to support families as they start the journey of ND referrals.
The Nottingham & Nottinghamshire ICB are in the process of developing a neurodevelopmental website for children, young people & their families/carers - A co-production group has been formed to support the development of the Children & Young Peoples Neurodevelopmental website “Minds of all Kinds”. The group includes young people and parents/carers with lived experience of neurodevelopmental conditions. The site will include clear neurodevelopmental referral pathway information and guidance along with signposting to various support resources. The development of the website will support families with pre- and post-diagnostic support and a much-needed resource as part of the pathway support mechanism.
We have been busy preparing a local event where we have updated Nottinghamshire based practitioners on our progress. The event was very successful, we presented examples of good practice locally and discussed how to make the best use of the network. More details can be found on the Network events tab.
We will be putting together a training platform where information, presentations and link to videos on specific topics will be provided. The aim of this platform is to provide network members with reliable knowledge and information on neurodivergent conditions.
We are organising another in person event in May 2024 with a broader group of stakeholders. This will provide an exciting opportunity to update everyone and reflects on 12 months of the network. We will summarise the action that has taken place during our first year and identify new areas of focus. We hope to see many of you there! Look out for further information which will be sent by email in early 2024.
We continue to work with our steering group to identify how best to initiate change, overcome barriers, and implement the core features of the ideal pathway which came from the May 2023 workshop.
How we will communicate with you:
If you would like to highlight areas that you feel the network should focus on, including suggestions for topics for our newsletter or next event, or have any suggestions for how to secure further funding for the network, please email This email address is being protected from spambots. You need JavaScript enabled to view it..
All suggestions gratefully received as we are dependent on funding to keep the network going.
The network is closely aligned to the aims of the Centre for ADHD and Neurodevelopmental Disorders Across the Lifespan (CANDAL), a research centre at the Institute of Mental Health. For updates on our research studies, visit the CANDAL website.
Rapid Response to: Children's mental health—pivotal roles for teachers and school nurses.
By Neil K Watson MC (2023)
Summary: The Centre for Mental Health's report advocates for a comprehensive public health model to address mental health issues, stressing the role of schools, educators, and healthcare providers, while urging concrete financial support and evidence-based interventions for meaningful improvements.
Read here
Risks Associated With Undiagnosed ADHD and/or Autism: A Mixed-Method Systematic Review
By B. French, M. Groom and more (2023)
Summary: Undiagnosed Autism (ASD) and Attention Deficit Hyperactivity Disorder (ADHD) pose significant risks impacting mental health, behavior, and socio-economic aspects, highlighting the need for comprehensive screening and acknowledgment in various settings.
Patients' experience of accessing support for tics from primary care in the UK: an online mixed-methods survey.
By C. Marino, K. Khan, M. Groom and more (2023)
Summary: A study examining UK healthcare experiences for tics revealed mixed perceptions in primary care, long waits for secondary care with limited access to tic specialists, and inadequate ongoing support, highlighting critical areas for improving UK tic services.
Use of healthcare services before diagnosis of attention-deficit/hyperactivity disorder.
By V. Prasad, E. Rezel-Potts, P. White and more (2023)
Summary: This study comparing healthcare service usage in children with ADHD against controls found that those with ADHD attended healthcare services twice as often, with increased rates of physical conditions like asthma and eczema, potentially indicating opportunities for earlier ADHD recognition and diagnosis.
The impact of sleep difficulties in children with attention deficit hyperactivity disorder on the family: a thematic analysis.
By B. French, E. Quai, J. Kilgariff and more (2023)
Summary: This study delved into the profound impact of sleep issues in children with ADHD on families, revealing challenges faced, negative effects on daily life, and the struggle to find effective coping strategies.
Practitioner Review: Clinical utility of the QbTest for the assessment and diagnosis of attention-deficit/hyperactivity disorder.
By A. Hall, M. Groom, E. Simonoff and more (2023)
Summary: This systematic review on the QbTest's diagnostic accuracy for ADHD found it to have moderate sensitivity and specificity, indicating it should not be used as the sole diagnostic tool but could aid in expediting diagnosis when used alongside comprehensive clinical assessments.
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