Neu Narrative

My role at STAR Project involves leading on the Neu Narrative Project, our three tiered lived experience project for parents and carers of neurodivergent children. We designed this project in response to the difficulties faced by the many neurodivergent families struggling to find adequate support. The projects three tiers are interconnected: a Panel to address issues being experienced by the family, creative therapeutic workshops to encourage family cohesion/relationships, and a training element to cascade the learning from the project across multi-sector agencies.

Neu Narrative began at the end of 2023, and so far, we’ve established our Panel and meeting schedule, and have begun planning the Creative Workshop themes. The Panel have been consulted on holiday and out of school provision, and we’re currently looking at social work for disabled and differently abled families. While these topics can be divisive, Neu Narrative’s Panel attendees work to a strict group agreement, respecting one another’s experiences and opinions and supporting each other wherever they can. The atmosphere is one of understanding and everyone is eager to offer solutions, contacts, and ideas to help solve one another’s problems.

This aspect of peer support is fundamental to the Project’s success and is necessary for many parent/carers who feel completely isolated by their experiences. The diagnostic services for ASD and ADHD are hugely oversubscribed, not just in Renfrewshire but across Scotland, leading to families feeling abandoned as they can often wait for up to two years for answers. Families have reported that once a diagnosis is given, they are offered very little support, usually receiving a single leaflet containing details of a few organisations to contact. As the project develops, we’re hopeful we can co-create solutions and change processes to ensure that families and children are able to thrive and support one another with the help of the Local Authority, NHS and other organisations. One of our Neu Narrative key partners is Renfrewshire Carers Centre, a wonderful local organisation which offers 1-1 support for carers, as well as funding for breaks away and access to peer support groups.

Many families and adults living with a lifelong diagnosis of ASD or ADHD report that a lack of understanding of these conditions, and a lack of training for professionals, is a big problem when trying to access services and live fulfilling lives. As a result, the second stage of Neu Narrative will involve Autism Connections, who work within Renfrewshire Health and Social Care Partnership. Neu Narrative’s participants will feedback on the existing Autism Connections training and provide input based on outcomes from the Panel and learning from the Creative Workshops.ensuring it represents their collective experiences as neurodivergent families and carers. We hope this work will provide a blueprint for involving lived experience panels in similar training in the future.

We’re grateful that Renfrewshire Council’s Whole Family Wellbeing Fund has supported the development of this project, and the team responsible for the fund have been keen to hear what participants have to say on a range of issues. All the Neu Narrative participants are ambitious and desperately need change to support their families and those like them across Renfrewshire, and they keep showing up to contribute even though their lives can be incredibly busy, stressful, and difficult to manage. We are hugely appreciative of everyone who has been involved so far, and we hope others will continue to join us.

To get involved in Neu Narrative, please contact me at daisy@star-project.org.uk or call STAR Project on 0141 889 5850.

Updated: April 11, 2024