Many of you will have seen recent media coverage regarding proposed reforms to Education, Health and Care Plans (EHCPs) and the government’s current SEND consultation in England.
We want to reassure families that there are no immediate changes to EHCPs and there is no action you need to take at this stage. The proposals are part of an open consultation process, meaning the government is gathering views before making any decisions.
Some of the aims of the reforms, such as increasing funding, focusing on consistency and creating a more joined-up system, have the potential to benefit children and young people with additional needs.
One of the proposals being consulted on is a move towards reserving EHCPs for children with the most complex needs, with other forms of support planned for children whose needs are considered less complex.
It is essential that any changes properly recognise and protect children with complex and progressive conditions, such as MPS and related lysosomal storage diseases.
Children in our community often have needs that span education, health and care. These include:
progressive, multisystem medical needs
significant therapy input across multiple disciplines
cognitive and learning differences
mobility challenges
For this reason, a clear definition of complex needs will be crucial.
It is vital that children whose needs are rare, variable or progressive are not overlooked and that coordinated support is available to those who need it.
A consultation period is currently open and we will be responding as an organisation. We are reviewing the proposals carefully to ensure the rights and needs of children and young people with MPS and related conditions are fully represented.
We will also be coming back to our community to hear your views.
We want to ensure our response accurately reflects the priorities and concerns of our members.
We will share further information soon about how you can feed into our submission.
For now, please be reassured: nothing is changing immediately and we are actively monitoring developments on your behalf.
As always, if you have immediate concerns about your child’s education or EHCP, our Support Team is here to help.
About the consultation
The government consultation SEND reform: putting children and young people first applies to England and remains open until 18 May 2026 (11:59pm).
Reach out
We are here. If you have any questions or concerns, call our Support Team Monday to Friday, 9am-5pm on 0345 389 9901 or email support@mpssociety.org.uk
