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New East Sussex neurodevelopmental pathway family service coming soon

Amaze is delighted to share the news that the East Sussex Clinical Commissioning Group (CCG) have commissioned us to provide a service to offer more support for families whose children are on the neurodevelopmental pathway (NDP) for conditions including autism and ADHD, both before and after diagnosis. See the Jargon Buster box below if you are unsure of any of these terms.

We are working out the details of what the service will look like. This is in co-production with East Sussex Parent Carer Forum (ESPCF) so it matches what families see as important for them, and with other local services, so it adds to what is already on offer from health and education.  

This is initially a one year pilot but with the expectation of it becoming a service families can rely on to continue. It is part of East Sussex’s action plan to implement the recommendations from the Sussex-wide strategy for neurodevelopmental conditions including autism and ADHD. Other parts of this plan focus on key issues such as assessment and diagnosis, but support for families was picked out as a gap. We offer a similar service in Brighton & Hove (funded by the Brighton and Hove CCG) which was launched late last year, so we have some experience to draw on too. 

Although the details will grow out of co-production, based on discussions so far, we expect the service to have three broad strands: 

  • Navigation – ensuring parent carers have access to information, and can find and take up available support appropriate to their needs and their stage on the pathway. Linking to good resources on common issues and helping parents connect to support groups, as well as key services. 
  • Webinars/workshops/training – a programme of training, family education and support, produced and delivered by combinations of expert parents, individuals with lived experience, and professionals.  Looking to extend and fill gaps in what is currently being offered by other services. 
  • Peer support – parent to parent peer support including online or face to face groups, coffee mornings and one to one peer support/befriending. 

As soon as we have a launch date we will share this with families and professionals in East Sussex. We will be recruiting for some roles to deliver the service so watch out for adverts soon if this is an area of work that interests you. We particularly welcome applicants with lived experience/parent carers.

Jargon buster

Neurodevelopmental conditions (NDCs): a group of conditions which are affected by the way the brain develops. This may be a result of genetic or environmental factors or a combination of both. Examples are Autism, Attention Deficit Hyperactivity Disorder (ADHD), tics/Tourette’s, Foetal Alcohol Spectrum Disorder (FASD), Developmental Coordination Disorder (DCD), learning disability and specific learning difficulties such as Dyslexia. People with NDCs can be called neurodiverse or neurodivergent.

Neurodevelopmental pathway (NDP): the system for identifying and supporting people who have neurodevelopmental conditions, including assessment and diagnosis, but also some pre and post diagnostic support. Some NDCs have a different route for example dyslexia is assessed via education not health services.

Clinical Commissioning Group (CCG): NHS organisations that organise the delivery of local health services. At the moment there is one in East Sussex but they will join up soon with the CCGs in Brighton and Hove and West Sussex to form a Sussex-wide Integrated Care Board and System (ICB and ICS). This will mean things like the NDP become more consistent across Sussex.

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