ESPCF February/March 2023 update


East Sussex Parent Carer Forum (ESPCF ) is the parent carer voice organisation for families with children or young people with special educational needs or disabilities in East Sussex.

Our role is to bring parents’ and carers’ voices to the table when decisions are being made about local services our families use. We are parent carer run, and work alongside organisations such as the NHS and East Sussex County Council to try and influence positive change and put families at the heart of decision-making.

NHS keyworker project

Our recent weeks have been dominated by work to help shape an NHS initiative which will provide keyworkers for children and young people with complex mental health needs. In January we asked families to get in touch if their child or young person is autistic or has learning disabilities, or both, and has:

  • been admitted to, or is at risk of being admitted to, a mental health hospital or setting AND/OR
  • visited A&E, or had contact with the police or SPOA (Single Point of Advice) because of the risk of harm to the child or young person in distress and/or to others

Our aim was to gather the experiences of families who are approaching or who are already at crisis point and ask: what happened, how did/do you feel, what support and treatment was or wasn’t offered, and what would have helped the most.

We are now drafting recommendations and finalising our report based on all the feedback we received: the conversations over the phone, video calls, by email, and in person. We are extremely grateful to the families who gave up their time to share often traumatic and distressing personal experiences with us. We hope to publish the report very soon and will be submitting it to NHS Sussex for consideration in the development of the keyworker service. If you’d like to find out a bit more about this work, click here to read our news story. We’ll update you as soon as the report is available.

Across the county

Our engagement team have been busy getting out and about reaching different communities to raise awareness of the NDP (neurodevelopmental pathway) family support service, commissioned by the NHS last year. We want 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.

This month we visited Conquest Hospital near Hastings to chat to parent carers, staff, and managers. We listened to feedback, talked about a range of issues, and highlighted different services available to families, some of which they hadn’t yet heard of. As well as the NDP service, we spoke about the forum and encouraged feedback about SEND (special educational needs & disabilities) services, and helped to highlight different avenues of support and information for families.

One parent we spoke to was at a particularly low point, unsure of where to find support or what their next steps should be. It was heartening to be able to help them find suitable resources, including the many wonderful parent carer support groups out there, where people truly empathise and understand. But it was also a reminder of how lost, unsure, and even scared we can feel after attending hospital appointments, and that there is still much to do to make sure families have the right information and support at the right time. We’re very grateful to the wellbeing team at East Sussex Healthcare Trust for inviting us along and hope to do another visit in the future.

We’ve also visited the MRI suite at Eastbourne District General Hospital to explore ways of making the whole experience better for SEND families. We had some really great suggestions from parent carers, such as a social story book about what to expect, a short video tour of the facilities, training for staff on what information is particularly helpful for SEND children, e.g. who sits where, and what do they do. We’ll share a full report of the visit soon.

Other places we’ve recently visited, or which are coming up soon, include children’s centres in Hastings and Peacehaven, community centres including foodbanks and community fridges in Eastbourne, Hastings and Hailsham, schools in Bexhill and Peacehaven, and an online health visitor working lunch. Last year we went to children’s centres in Crowborough and Uckfield, and hope to return again soon, and we’re particularly keen to hear about places we can visit in the north east of the county – so please do get in touch if you have any suggestions.

Day to day

It’s great to be out and about so much – such a vital part of our work – but we’re also busy with ongoing projects and groups. These currently include: a parent carer working group developing a webinar on Emotionally Based School Avoidance; feeding in parent carer experiences as part of the neurodevelopmental pathway family support service; membership of the group overseeing the implementation of the East Sussex SEND strategy; and the working group on developing a parent carer/school charter.

You might also recall in September last year we held engagement sessions on short breaks to hear from parent carers about what is needed. The local authority has now published its new offer and you can read our full update here: click to read short breaks update. We’re hoping to meet with the Children’s Disability Service to find out more about the threshold for specialist services, which include overnight respite, and to ask about the plans to improve and expand provision. We will let you know what we find out.

If you’re not already a member of ESPCF and would like to join, you can find our membership form here: ESPCF membership form. We send regular email updates with opportunities to get involved and share your views, as well as useful information about activities, events, and groups for parent carers. We also publish a termly newsletter, and as an ESPCF member you can join our closed Facebook group which is a welcoming and supportive community of parent carers, with a great deal of lived experiences to share.