The SMS Foundation UK has developed a formal supporting statement to help families and professionals better evidence the needs of children and young people with Smith‑Magenis syndrome (SMS) when seeking access to specialist services.
This resource is designed to support referrals and assessments for services such as:
- Child and Adolescent Mental Health Services (CAMHS)
- Children with Disabilities (CWD) teams
- Specialist social care services
- Integrated neurodevelopmental and mental health pathways
It provides clear clinical, developmental and contextual information about SMS, including the emotional, behavioural, mental health and family‑impact factors that are often misunderstood or underestimated within referral and threshold processes.
What is this statement?
The statement explains:
- The neurodevelopmental nature of Smith‑Magenis syndrome
- The mismatch between cognitive ability and emotional development
- The complex behavioural profile associated with SMS
- The high risk of escalation without early intervention
- The impact on families and daily functioning
It is intended to support professionals in understanding the full picture of SMS beyond diagnosis labels alone, and to help ensure that assessment and decision‑making reflects real‑world risk, complexity and need.
Who is it for?
This resource can be used by:
Parents and carers
- To support referrals to CAMHS, CWD teams and social care
- As evidence alongside professional reports and EHCP documentation
- To help explain needs during assessments and reviews
Professionals
- Social workers
- CAMHS clinicians
- Educational psychologists
- SEND teams
- Paediatric services
- Local authority decision‑makers
How to use it
You can:
- Attach it to referral forms
- Include it within assessment documentation
- Use it as supporting evidence in threshold decisions
- Share it across multi‑agency meetings
- Add it to professional reports
It is designed to complement existing clinical and educational documentation, not replace it.
Download the statement
The full statement is available to download below and can be used freely by families and professionals to support access to appropriate services:
If you are a parent, carer, or professional and need additional support, guidance, or advice around referrals, assessments, or accessing services, the SMS Foundation team is here to help.
Contact us:
support@smith-magenis.co.uk
The SMS Foundation UK is a registered charity supporting families, professionals, and services to improve understanding, access, and outcomes for individuals with Smith‑Magenis syndrome.
Delivery of EHCP Provision for Children with SMS