Written Statement: Improvements in Neurodevelopmental Conditions Services

I am pleased to inform Members that, in addition to more than £11.5m already invested to improve autism services over the next three years, we will be making an additional £12m available to support a new national improvement programme for neurodevelopmental conditions to 2025.  

This programme will support the development of timely and consistent all-age neurodevelopmental services and will include much-needed additional advice and support services for parents and carers.

This new investment follows our strong track record in investing in and supporting autistic people.  Wales was the first part of the UK to publish an autism strategy in 2008 and, more recently, our statutory Code of Practice on the Delivery of Autism Services, came into effect in September 2021.  

Our aim is to build on these foundations to ensure equity of services and support for people with other neurodevelopmental conditions, such ADHD and Tourette’s syndrome.

Neurodevelopmental services are under pressure, which has only intensified as a result of the pandemic. Increased awareness of autism and other neurodevelopmental conditions has led to rising demand for assessment and support, which has unfortunately led to longer waiting times and gaps in provision, which need to be addressed urgently.

To help us understand where action should be targeted, we commissioned an independent demand and capacity review. A summary report is published today. It highlights where our existing reforms have worked well, where there are gaps, and where urgent attention is needed. The full report will be published shortly.

The review confirms long-standing concerns that swifter access to support and assessment is needed. Services should be based on need rather than led by diagnosis – this echoes the  Children’s Commissioner for Wales’ 2020 No Wrong Door report about children’s mental health and wellbeing.

The collaborative working evident in the Integrated Autism Service is working well across traditional health and local authority service boundaries, providing support based on need and reflecting the social model of disability.  We will build on this success, taking a whole systems approach, placing the individual and their families and carers at the centre of the care they receive.

But we have a significant task ahead of us to take forward the conclusions from the review as we develop a sustainable approach to future service delivery. 

To make progress we will advance the legacy of the Together for Children and Young People’s programme which worked with stakeholders to create a solid base for service improvement across assessment services. We will also build on the work of the National Autism Team; the autism leads network and the Integrated Autism Service. The views of people with lived experience will be at the centre of everything we want to achieve.

The reform programme will have three main work streams – the first taking immediate action to provide additional support to reduce some of the here-and-now pressures on assessment services, and to quickly put in place much needed support for parents and families.

The second workstream will co-produce and test models to reform neurodevelopmental condition services so they meet identified needs and are sustainable in the long term. The third workstream will develop important cross-cutting priorities, including developing a workforce strategy, improved data collection and monitoring and making the best use of digital opportunities to support services in the future.

Since taking responsibility for this area last year, I have had the opportunity to meet families and carers of children and young people with neurodevelopmental conditions. I have been struck by their resilience and determination to navigate their way through complex systems often with very little support. 

I want this situation to change; to become easier. We must protect and support families so they can continue in their vital caring roles and enable their loved ones to lead fulfilling lives.  

I will be monitoring delivery of our programme closely, there will be a new Ministerial Advisory Group on neurodevelopmental conditions which will provide me with advice on progress. 

Over the next three years we will also be evaluating the implementation of the Autism Code of Practice to find out if we are making the positive difference to people’s lives we want to achieve.

I will keep Members updated about progress.