The Children’s Regional Partnership Board meeting in February focused on how to improve services for children and young people with neurodevelopmental conditions.
Neurodevelopment means brain development and everyone’s brains develop differently. This can include autism and ADHD as well as dyslexia, dyspraxia, or Tourette’s and tics. Another term often used is ‘neurodiversity’ which is an idea that recognises that everyone’s brain develops differently and that there is no one ‘right’ way of thinking, learning, and behaving, and differences are not a bad or negative thing.
To begin, we watched a video of a local family about their experiences of waiting for a neurodevelopment assessment. We also shared a pack of information including more stories from families about living with neurodiversity.
The board explored questions about how they could work better together to provide support. It can take a long time to have an assessment to see if a child or young person has a neurodevelopmental condition. One way we’d like to improve this process is to support children and families based on the needs they have rather than the diagnosis. We call this approach ‘The Right Door’ – wherever you go to find support – at school, a community, service, social service, or health service, you’ll get help. It’s also part of our core principles set out in the NYTH/NEST framework.
Here are some of the themes that came out of the discussion.
- Importance of effective communication.
- Having the ‘family’s voice’ at the heart of service design and delivery.
- The need for effective data systems, enabling data sharing and providing a rich picture to inform decision making.
- The cultural challenges of effective multi-agency collaboration.
- The importance of building relationships and establishing trust, in all directions.
There’s a lot happening already to try and improve services for neurodiverse children and young people in North Wales.
- The Right Door programme is experimenting with new ways to improve support. For example, making the move from primary to secondary school easier for neurodiverse children; exploring whether providing the right support to children aged 0 to 7 will help reduce the number who have to wait for an assessment and trying out the Portsmouth Neurodiversity Profiling Tool, to identify a child or young person’s needs and suggest strategies that may help.
- Betsi Cadwaladr University Health Board (BCUHB) are working on improving their children and young people’s neurodevelopment service – including to help identify children who need support early, provide family-centred support and advice and make sure guidance and assessment are easily accessible.
- The BCUHB CAMHS Innovation Programme (child and adolescent mental health services) is trying out new ways of working in the public, private and voluntary sectors to improve mental health and wellbeing of children and young people. It includes projects to support children and families on the neurodevelopment waiting list and after they receive a diagnosis. The Bevan Commission are supporting projects to pilot and evaluate their work and expand if successful.
- The Neurodivergence Improvement Programme funded by Welsh Government is setting up new project to improve support before and after assessment, sharing learning and carrying out engagement and research with neurodivergent children and their families so we can better support them.
We discussed lots of ideas, which we need to check with more people, to find out if they think they could work and would be willing to give them a try and let us know how they get on. We also want to provide lots of opportunities for children, young people and families and those who support them across all our organisations to work together and learn from each other about the best ways to provide support.
For more information please email us at childrensrpb@denbighshire.gov.uk
Download
Focus on children and young people neurodevelopment
Key messages from a range of evidence about the experience of children, young people and families with neurodevelopmental conditions in North Wales
More information about the evidence behind the key messages including statistics, findings from research and stories from children, young people and families.