🚨 Major Update: FOI Documents Reveal East Sussex Has a Fully Commissioned Selective Mutism Pathway
A recent Parliamentary response confirmed that Integrated Care Boards (ICBs) are expected to provide services equitably across their regions.
To understand what “equitable” support should look like, I submitted a Freedom of Information request to Kent Community Health NHS Foundation Trust — the organisation delivering East Sussex’s Children’s Integrated Therapy Service.
They answered each of my questions and released four internal documents.
What they show is deeply concerning for families across West Sussex, Brighton & Hove, and Surrey.
⭐ What East Sussex (excluding Brighton & Hove) Provides — for their children:
🔹 A commissioned Selective Mutism pathway running for over 20 years
This pathway is long‑established, structured, and embedded in local services.
🔹 Referrals accepted from age 3
Early intervention is built into the system.
🔹 Speech and Language Therapy leads the pathway
SLT assesses SM, provides training, runs MDT meetings, and supports schools.
🔹 CAMHS is formally involved
East Sussex CAMHS receives SM referrals, collaborates with SLT, and has written guidance for practitioners.
🔹 Schools and early years settings receive training
East Sussex provides comprehensive resources and guidance.
🔹 Families receive a package of care
Including follow‑up MDT meetings and ongoing support.
🔹 The pathway is evidence‑based
Using SMIRA, RCSLT, Maggie Johnson, and the What Works database.
⭐ This is not just a West Sussex issue — it affects Brighton & Hove and Surrey too
East Sussex’s pathway is commissioned by:
• East Sussex County Council
• Sussex & Surrey ICB
This means:
• East Sussex children receive early intervention, SLT support, CAMHS collaboration, and school training
• Children in West Sussex, Brighton & Hove, and Surrey do not - despite being part of the same Icb.
This is a regional inequity that has spanned for over 20 years.
⭐ Children living in West Sussex, Brighton & Hove and Surrey are far more likely to experience a “failure to launch” outcome.
This week, I learned a term that resonated deeply: “failure to launch.” It’s used to describe the outcome when children’s needs are not supported early, and when they do not have access to early intervention.
⭐ Why this matters
Selective Mutism is treatable.
Early intervention is critical.
Without support, children face long‑term consequences.
East Sussex has shown what good support looks like.
There is no reason children in West Sussex, Brighton & Hove, or Surrey should be left without it.
⭐ Thank you
Thanks to your support, we’ve gained:
• BBC and local press coverage
• Parliamentary and MP involvement
• A scheduled meeting with decision‑makers
• Guidance from SMIRA professionals
• And most importantly, a platform for parents to speak out.
I want to be clear: I’m hopeful that my own daughter will now receive the support she needs, thanks to the private report I obtained and the EHCP amendments that her SENCO has worked on closely with me. (Full credit to her school SENCO)
But this campaign is about more than just my daughter.
I’m doing this so that no other parent in West Sussex has to feel as lost or alone as I have, passed between services for years, and so that no West Sussex child living with SM, is ever described as having “failed to launch” due to a lack of support. Support that’s been provided in a neighbouring county, part of the same ICB - for more than 20 years.
I am being accompanied in the meeting next week by a handful of other West Sussex parents - wish us luck!
I will of course update you afterwards.
Thank you
Jo 💛