More progress on improvements to the neurodevelopmental pathway

Amaze and the local parent carer forums are getting involved in developments to the neurodevelopmental pathway (NDP) in both Brighton & Hove and East Sussex. The neurodevelopmental pathway (NDP) describes the different steps that a child or young person goes through from referral to the diagnosis of a neurodevelopmental condition such as autism or ADHD.

There are currently very long waiting times for children and young people needing assessments for neurodevelopmental conditions. Even when a child has received a diagnosis, there can be additional waits to access any support, in particular from specialist teams at CAMHS who might not have previously provided mental health support. This is a nationally recognised problem that is shared by many of our local families, so we are working with health commissioners and managers to see what can be done and to ask for greater levels of investment.

In Brighton & Hove, Amaze and the Parent Carers’ Council have been involved with Brighton & Hove health service’s work to improve the neurodevelopmental pathway (NDP) for autism, ADHD and tics /Tourette’s syndrome.

This work, which included getting vital feedback from parent carers, showed that a dedicated Brighton & Hove NDP Family Training and Navigation Service could help to improve parental support for families with children and young people on the pathway.

Brighton & Hove CCG (Clinical Commissioning Group) has commissioned Amaze to coordinate this offer for our local parent carers, and work began this month. Referral into the NDP Family Training and Navigation service will be by a professional working with your child or young person.

Our aim is to provide parent carers with information and training, as well as signposting them to support networks that can help sustain them through the challenges these conditions (and commonly related diagnoses) bring to a family. We are hoping to launch the service towards the end of this year and it will operate alongside the range of NDP services and other support across health, education and social care within Brighton & Hove.

East and West Sussex teams are looking to provide improved support in different ways.

In East Sussex, ESPCF have started attending NDP meetings to input the views from parent carers. Commissioners are currently reviewing the levels of referrals their teams get (interestingly East Sussex has a greater number of children with ADHD presentations than other parts of Sussex) and they are asking for more investment to support these higher numbers of referrals and assessments. Amaze and the parent carer forums are also feeding into a Sussex-wide review of NDP which is looking at what is in place and where the gaps are across the region, which has the potential to share good practice and raise standards in this area across the counties.

Look out for more information about the neurodevelopmental pathway on our website or social media channels soon.

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