This is an opportunity to have hands-on involvement in shaping the service you and your family need.
You may remember us mentioning new funding which we’ve received to help design and develop a new service for families whose children and young people are on the neurodevelopmental pathway.
This is in response to the feedback you gave highlighting that, right now, families on this pathway are not getting the support they need – at both the pre and post diagnosis stages. The situation is particularly worrying given that children and young people are waiting several years to have their needs assessed, diagnosed and to receive support.
We’re now able to share more details about the project and how you can get involved. ESPCF will work with parents and carers to shape what will be offered and the Sussex charity Amaze will set up and run the service, having been commissioned to do so by the East Sussex Clinical Commissioning Group.
There are three elements of this service
Navigation: this is about how families can find and access the right support
Starting in July, this strand will be developed by ‘learning through doing’: parent carers feeding in views about what works/doesn’t work, spotting gaps, and identifying the best, most effective ways for families to find out about and access the available support.
Webinars, workshops and training for families while on the pathway
We’d like parents and carers to help design the different topics, format, and content of this element. What subjects should be prioritised? Is good content already out there?
Peer support, e.g. coffee mornings, befriending, 1:1 support
Help us with ideas for how peer support should work. Can we build on existing networks, such as local support groups? How can we reach those most in need?
So, what happens first?
We’re starting with a survey which asks you to tell us about:
- what works (your positive experiences)
- what doesn’t work (your negative experiences)
- what is needed (what you think is needed to improve family support in the future)
This is a really important stage to help co-design the training which families need. The survey takes about 10-15 minutes to complete. The closing date for responses is Tuesday 12th July 2022. Please share far and wide with as many families living in or accessing services in East Sussex.
The navigation element starts in July and then in September parents and carers will be invited to a focus group to help decide on the detail of workshops and training. More information on this will be shared soon.
Finally (for now)
Would you like be a parent carer representative for this project?
We’d love to hear from you if can offer a bit of time to help represent parent carer views in this area. We can be flexible around how this might work, from ad-hoc involvement such as commenting on resources, through to attending meetings. Please get in touch if you’d like to find out more.
What is the neurodevelopmental pathway?
It’s the whole process from when something is first flagged right through to post-diagnosis support for families with children/young people with conditions such as ADHD, autism, Tourette’s, i.e. neurodevelopmental conditions, whether diagnosed or not.
The age range for this new service is up to a young person’s 25th birthday.
Which specific neurodevelopmental conditions are included in this new service?
The new family support service is intended for families with children and young people with any of the following conditions:
- Foetal Alcohol Syndrome (FAS)
- Learning disabilities/developmental delay
- Social communication concerns
- Sensory processing disorders
- Tics/Tourette syndrome