Parent carer representatives are the heartbeat of forums; without them, we wouldn’t be able to do our work. They provide the voice of SEND families when services and support are being designed, developed, and reviewed.
At ESPCF, we are lucky to have dedicated parent carers working hard to represent your views and experiences. We hear from five ESPCF reps – Marie, Laura, Helen, Debra, and Corinne – about what they do and why.
Marie – wheelchair rep
“Over the past few months, I have been working with wheelchair services to ensure the voices of parent carers are being heard. This work has involved a visit to Ross Care (the current provider of NHS Wheelchair Services) to see how the service operates, attending regular service review meetings and being an evaluator for the wheelchair services procurement across Sussex. Being an independent evaluator has ensured that parent carer voice is identified and recognised and that the future operator of our wheelchair service puts working with parent carers, children and young people at the heart of their service. Going forwards, I will be working with Ross Care on supporting family coffee mornings and fun events.”
Laura – SENDIASS rep
SENDIASS is the special educational needs and disabilities information, advice, and support service, which in East Sussex is run by the charity Amaze. Every term, a steering group of reps from ESPCF, Amaze, East Sussex County Council, the NHS, and schools meet to monitor and review the service and hear the main themes and issues parent carers and young people are talking about to the SENDIASS team.
Laura says, “I feel I am able to take my experience and communication from parent carers from my various roles in ESPCF and Amaze forward to raise awareness of what we actually need, rather than what services assume we need. I feel that I can represent real life on behalf of parent carers and subsequently how rewarding that feels”.
Helen – APRIG rep
APRIG is the Autism Pathway Review and Implementation Group and is made up of health and education professionals and parent carers. One of its current projects is a social communication position statement which should be coming soon, as well as an information sheet about Gestalt Language Processing, which is a language-learning style often used (but not exclusively) by autistic children.
Helen says, “Too often our perspective as SEN parent carers is adversarial and frustrating, as we struggle to get our children the support they need. Working on the Autism Pathway Review and Implementation Group has shown me that professionals want the exact same things for our children and are working incredibly hard to get there. Through my role, I hope to bridge this gap by sharing our experiences and advocating for the resources and actions that will make a difference”.
Debra – alternative provision rep
Debra is a parent rep on the Alternative Provision (AP) Sub-Group, which meets every half-term to look at ways to improve the experience of AP for children and young people and explore the potential barriers to access and gaps in provision. One of the current tasks is making sure information about the alternative provision directory is clear and helpful.
Debra says, “I represent parents and carers on a local authority AP group. My role is to ensure the voice of parents and carers are raised and to feedback to ESPCF to follow up on things that should be addressed and discussed further. Having a parent carer representative is important to ensure our voices are involved in discussions about services for our children. ESPCF are fantastic at supporting me with the group and in valuing my time and input”.
Corinne – Autism Partnership Board rep
The Autism Partnership Board comprises autistic members of the community, reps from ESPCF, the NHS, Sussex Police, charities, and East Sussex County Council. Its focus is to improve the lives of local autistic people and ensure their voices are heard. Recent work has been organising Neurodiversity Celebration Week and producing a series of events available on YouTube exploring neurodiversity.
Corinne says, “I have been an ESPCF representative for over three years on the East Sussex Autism Partnership Board which works to help autistic people and their carers lead more fulfilling and rewarding lives. The board also reflects all neurodivergent individuals. In addition to the APB, I represent ESPCF on the APB Autism and Action planning group where I present the voice of parent carers gathered through our feedback work. It is important to ensure our voices are heard across many different workstreams and that actions are put in place to influence for positive change”.
Thank you
We’d like to say a big thank you to all the ESPCF parent carer representatives who give up their time to help raise our collective voice. It matters hugely that the experiences of SEND families are heard and acted on, particularly now when there is so much change happening.
If you are interested in getting involved with our work, please get in touch. We’d be delighted to have a chat about the sorts of opportunities currently available or which might be coming up soon.