Education Support Service

Helping children and young people with SMS thrive at school

Getting the right education for a child with Smith-Magenis syndrome can be one of the most stressful parts of family life. School breakdowns, confusion about support, EHCP battles, constant meetings and repeated exclusions can leave parents exhausted and unsure what to do next.

You care deeply about your child’s development, opportunities and future. Our Education Support Service exists to help you move from stress and uncertainty to confidence and progress.

We work with families and schools to improve educational experiences, secure meaningful support and reduce the barriers that can stop children with SMS from accessing the education they deserve.

What we help with

Every day we hear from parents who are struggling to get the right support at school, or who aren’t sure what steps to take next. We can help with things like:

• Understanding school provision and educational pathways
• Support through the EHCP process
• Navigating MDT meetings with local authorities and schools
• Transitions between key stages and placements
• Training and awareness for schools and professionals supporting your child

Our goal is to give you practical help, clear thinking and advocacy-focused support so you feel equipped and informed at every stage.

How we support families and schools

We combine tailored guidance with resources that make a real difference in everyday life.

One-to-one education support

We can work with you to look at your child’s current EHCP and the support they receive day-to-day. This support is personalised, focused on your priorities, and centred on your child’s real experiences in school.

This might include helping you shape your EHCP outcomes, preparing for meetings, or pointing you towards evidence and language that strengthen your case.

Practical tools and guidance

We develop clear, easy-to-use materials and resources to help parents and carers understand the education system and your child’s rights. This includes guides, webinars, and recommendations designed specifically for SMS. These resources help you feel ready and informed, not overwhelmed.

Training that helps schools understand your child

A lack of understanding about SMS is one of the biggest barriers families face in education. Many teachers and school staff will never have encountered SMS before, which can lead to misunderstanding, inappropriate expectations, escalation of behaviour and breakdowns in placements.

Alongside supporting families directly, we offer specialist SMS training for schools and professionals. Our training helps staff understand how SMS affects learning, behaviour, communication, sleep and emotional regulation, and how this shows up in the classroom day to day.

This training is practical, compassionate and grounded in lived experience. It gives schools the confidence and tools they need to better support your child, reduce distress, and create a more inclusive learning environment.

If you feel that a lack of understanding at school is affecting your child’s experience, we can help you explore whether training might be a helpful next step.

You’re not alone in this

Educational support should help your child flourish, not feel like another battle. We’re here to stand with you, clarify the options, and help turn stressful meetings into confident steps forward.

No family should have to navigate education with SMS on their own.