Embracing complexity in diagnosis

Posted on 22 October 2019

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A new report from Embracing Complexity - a coalition of neurodevelopment and mental health charities - launched a report today looking at multi-diagnostic pathways for neurodevelopmental conditions.

Embracing Complexity is a new coalition of 38 UK charities who support people with neurodevelopmental conditions (NDCs) – conditions such as learning disabilities, autism, ADHD, dyslexia, dyspraxia, Tourette Syndrome, Down syndrome and many more which affect how people think and interact with the world around them. We’re calling for a more joined-up approach to diagnosis, services and research.

Getting a diagnosis is a vital first step in finding the right support and achieving your aspirations in life. But people with NDCs often wait too long for diagnosis and face many obstacles in receiving a diagnosis. One problem is that most people with NDCs have more than one condition, but most diagnosis pathways (the systems set up in the NHS to diagnose conditions) only assess people for one condition at a time. This means that many people face lots of referrals to different specialists and it can take years to get all of the diagnoses a person needs.

However, some services across the UK are starting to diagnose multiple conditions as part of a single assessment. This report looks at four of these emerging services: Peterborough Integrated Neurodevelopmental Service, Lambeth’s paediatric service, the Newcomen Neurodevelopmental Centre in London, and the All Wales Neurodevelopmental Diagnostic Assessment Pathway. The report explores how each of these services were set up, the challenges they’ve faced and the successes they’ve achieved. Setting up one pathway to cover multiple NDCs can be very difficult due to funding and staffing pressures as well as the wide range of needs of people with different conditions. Yet where these pathways have been set up, they have generally reduced waiting times, saved money, and received positive feedback from families.

There is still more work to be done – these services are all for children rather than adults, and often only cover a handful of NDCs, not the wide spectrum of conditions people experience. We hope that by highlighting these innovative examples, we can help build similar services on a larger scale, encourage research into which models are most effective, and free up more resources to provide support to people and families during and after diagnosis. By embracing complexity in the way we diagnose neurodevelopmental conditions, we can diagnose people faster, get them appropriate support more quickly and help the limited resources we have go further.

You can read the full report that was released today here

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