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SMS Foundation UK

Supporting SMS families for a positive future

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We are a small charity that supports families living with Smith-Magenis syndrome (SMS)

Never feel isolated or alone. Call our helpline and leave a message: 0300 101 0034 (we aim to respond to messages within 48 hours).

Newly Diagnosed?

Does your SMSer get the support they need in their education setting?

June 22, 2022

Please share your EHCP/CSPs with us. We want to draw out provisions and good practice to help every individual with SMS prosper in their education. 

Our recent survey on education produced some startling results. 

56% of our children start in mainstream education, however after three years this falls to 15% and by the start of secondary school, only 11% remain in mainstream schools – with the rest moving to specialised SEN/ASN schools.  

Alarmingly, we found out that 32% of SMSers will be excluded in some form in the first year of secondary education. 24% of SMSers have been permanently excluded from their school at least once during their education. 

Adding onto this 31% of our young people did not have an adequate form of support through an Education Health and Care Plan or Co-ordinated Support Plan which was followed by the school. However, this means that 69% of the plans are successful and we want to learn from them what makes them successful. 

Through your comments, common themes around exclusion of SMSers emerged such as a lack of knowledge by the school on how to deal with the level of need, parents being unsure of what to put in an EHCP/CSP to ensure appropriate support, as well as a general feeling of the plans not being followed.  

We’d like to move on to our next stage of this project – which will involve harvesting EHCP/CSPs from our families and identifying important ‘gold standard’ points to include. 

Submit your EHCP/CSP here.

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Please note: This is an answer phone service that will alert us as soon as a message is left. A member of the team will call you back as soon as possible – we aim to respond to messages within 48 hours.

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