The new family support service for parent carers with children and young people on the neurodevelopmental pathway (NDP) is now up and running.
We’ve fed back to the NHS what you told us is needed, referrals are coming in for the navigation service, and workshops are underway. We’ve also been out and about to hear from you directly about the type of support and information you’d like to see available. Read on to find out more.
The neurodevelopmental pathway refers to the different stages of the process from when something is first flagged right through to post-diagnosis support. It also includes those children and young people who are assessed but do not get a diagnosis.
Conditions included in the neurodevelopmental pathway are:
- Foetal Alcohol Spectrum Disorder (FASD)
- Learning disabilities/developmental delay
- Social communication concerns
- Sensory processing disorder
- Tics/Tourette’s Syndrome
ESPCF’s role in the service is to make sure parent carers have the opportunity to share their experiences and to identify and develop what families need in terms of support and information. The East Sussex charity Amaze is responsible for running the service and we meet with them every month to share and review feedback.
Thank you to everyone who responded to our survey asking for your feedback on what works, doesn’t work, and what is needed to improve support for families with children on the neurodevelopmental pathway. Here is what you told us:
- 79% of children and young people represented had more than one condition. The most common was autism and ADHD, and autism and sensory processing.
- When asked what helps families find out what support is available, the majority sited websites as the place to go for information, However, getting information from other parent carers came a close second.
- We really wanted to know what courses and workshops can help families and you gave us plenty of ideas. Suggestions included:
- Meeting parents who are dealing with similar issues
- Help with sleep issues
- Support for different groups such as teenagers, non-SEND (special educational needs & disabilities) siblings
- Information and support sessions on anger and regulation, anxiety, sensory processing, mental health and emotional wellbeing
- We also wanted to know if you prefer workshops to be based on the condition (such as ADHD) or a general topic (such as sleep, behaviour). The results were almost even, and the conclusion from this is to provide both.
- The comments within the survey were very telling about the lack of support available and sadly not uncommon. All of this has been fed back to NHS commissioners and other relevant decision makers. Comments included:
- Parents need a comprehensive document explaining everything as soon as their child is categorised with SEN
- Treat parents as part of the solution not the problem
- Post diagnosis is a very lonely and isolated place
- “My child has been on the waiting list for over two years, and no-one has contacted us to see if we need any support”
Out and about in East Sussex
ESPCF has been out and about to tell people about the new NDP service and, importantly, to hear about your experiences and find out your views on what is needed. So far, we’ve visited Crowborough Children’s Centre, Uckfield Children’s Centre, Langney shopping centre in Eastbourne, the Meridian Centre in Peacehaven, and Eastbourne General District Hospital. Still to come are:
- 29th November, 10am-2 pm, Hastings Centre
- 8th December, 10am-2pm, the Beacon, Eastbourne
“It has been so worthwhile getting out on the road and meeting with people face to face. We’ve heard from parent carers who’ve said they feel extremely isolated and alone, both in terms of where they are on the ‘pathway’ and geographically. The need for local parent carer support groups in the more remote areas of the county is overwhelming.
Another notable issue we heard about was concern over not having a diagnosis and if this would hinder access to support. While it was great to reassure parent carers that a diagnosis is not needed in order to access support, it is worrying that this message has not been reaching those in need.” ESPCF engagement worker
We’re keen to chat to as many parent carers as possible and one idea we had is to come along to school coffee mornings. If you know of any schools which might be interested, please get in touch and we’ll be delighted to make contact.
And finally, there’s no need to wait until we’re in your area to share your views. We’d love to receive your feedback anytime about support for families with children on the neurodevelopmental pathway. You can contact us at firstname.lastname@example.org or, if you prefer, we can arrange to call you at a time that suits you.
Referrals to the navigation service
Since launching this summer, the navigation service has received 85 referrals, the majority of which (80%) were self-referrals from parent carers. Not only does this service encourage referrals from families themselves, but a diagnosis is not required in order to make a referral.
Click below to read more about what the service is and how it might be able to help you:
A programme of training, family education and support is now underway, including a five-week Insider’s Guide to ADHD, a workshop on neurodiversity for parent carers of primary school-age children, and a session on understanding tics and Tourette Syndrome.
Coming up soon online is a workshop for parent carers of secondary school-age children who are awaiting assessment for a neurodevelopmental condition. The workshop is running on Thursday 8th and Thursday 15th December, 10am-12 noon. Contact NDP@amazesussex.org.uk or phone 0800 088 6013 for more information.
Befriending and parent carer support groups
An important element of the NDP service is peer support. Experience has shown how valuable parent carers find it to talk to another parent carer who has the same or similar experiences. Amaze Face2Face has been running support groups and a befriending service in Brighton and Hove and in East Sussex for many years. The new funding for the NDP service means that the Face2Face team can now run NDP parent groups in East Sussex:
Uckfield Group – Victoria Pavilion New Town Uckfield TN22 5DJ
First Thursday of every month, 10am – 12 midday
Hailsham Group – Hailsham East Children’s Centre Vega Close Hailsham BN27 2JZ
Tuesday 29th November, 12:30 – 2:30
Tuesday 20th December, 12:30 – 2:30
Join them for a cuppa and a chat and meet other families with similar experiences. Contact Ruth at Amaze to find out more: email@example.com or call 07485 345907.
The Face2Face befriending service provides emotional support to parent carers of children and young people during the very early days, around the time of diagnosis. They have a team of trained befrienders who are ready to support parents in most parts of East Sussex, particularly around Crowborough and Eastbourne. These volunteer befrienders have undertaken intensive training and are well equipped to support other parents.
Are you a parent carer who could offer support to other parent carers?
Face2Face are always on the lookout for volunteers to add to their team of about 30 befrienders and are really keen to hear from parent carers – including dads, grandparents, foster parents and adoptive parents who can bring their experiences to the team. Training is provided within school hours and expenses are reimbursed. Click here to find out more.