An amazing step forward 🤞❤️

I’m pleased to say that today’s multi‑agency meeting was genuinely positive, and significantly well received. It marks a significant step forward for all areas of Sussex.

 Representatives from education, health, commissioning, mental health services, parent organisations and parent representatives all came together, and I presented a full evidence pack including parent case studies, FOI findings, examples of pathways from other areas, SMiRA recommendations and clear evidence of gaps in current provision. Most importantly, the lived experiences of families were at the centre of the discussion.

I was accompanied by other families who I can’t thank enough ❤️ they added their voices and contributions and our message was aligned. 

The campaign was taken seriously. I felt listened to. And we now have agreed action points, with a follow‑up meeting scheduled for October to review progress.

A Sussex‑wide approach is now being explored, with commissioners considering whether a county‑wide programme could be developed rather than limiting improvements to West Sussex alone.

A separate commissioning meeting will take place to explore options.

Service leads committed to reviewing selective mutism training within their teams and recognised the need for approaches beyond traditional talking therapy. There was strong agreement on the importance of early intervention, and recognition that approaches must differ depending on a child’s age and stage of development.

Schools were identified as a crucial part of the solution, with training and awareness in education seen as essential. I made sure older children, those with entrenched selective mutism, EOTAS learners, home‑educated children, those in private education and those currently out of education were included in the discussion, and there was agreement that any future service must consider all of these groups.

There was interest in incorporating selective mutism into existing early intervention services such as Thought‑Full and Experts at Hand. SMiRA’s expertise was warmly received, and teams  agreed to contact them to explore training and support. Safeguarding risks were discussed, including how communication barriers can prevent children from disclosing abuse or asking for help. There was also a commitment to ensuring that children’s views are sought in ways accessible to them, rather than relying on spoken communication.

Several professionals shared personal experiences of selective mutism within their own families, which brought a genuine sense of understanding and commitment. I explained why Speech and Language Therapy must be involved in early intervention and why CAMHS must form part of the pathway for older children or those with entrenched selective mutism. There was interest in training the YES service to offer approaches beyond talking therapy.

Finally, WSCC agreed to review their website content to include practical early tips for families — small changes that can make a big difference.

This meeting won’t solve everything overnight, but it feels like a significant step forward. We now have agreed actions, continued dialogue and a shared commitment to improving recognition, training and support across Sussex.

Thank you to every family who has shared their story. Your experiences formed the heart of the evidence presented today. And thank you to the parents who attended, either online or in person — I hope I represented you well.

The West Sussex Parent Carer Forum were, as always, a great support.