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Down’s Syndrome Regression Disorder
08 July 2025
Lead MP
Jen Craft
Thurrock
Lab
Responding Minister
Stephen Kinnock
Tags
NHS
Word Count: 9051
Other Contributors: 9
At a Glance
Jen Craft raised concerns about down’s syndrome regression disorder in Westminster Hall. A government minister responded.
Key Requests to Government:
Calls for increased research funding and a more robust diagnostic framework to be put in place in the NHS to address this under-researched condition.
How the Debate Unfolded
MPs spoke in turn to share their views and ask questions. Here's what each person said:
Lead Contributor
People with Down's syndrome face a condition called regression disorder which leads to severe loss of previously acquired developmental skills, often overnight. Existing studies are scarce and inconsistent in naming the disorder, leading to poor clinical recognition and no specific care available within the NHS. Families struggle as children retreat into themselves, becoming uncommunicative and catatonic.
Amanda Martin
Lab
Portsmouth North
Shared a story about her constituent's son Ewan who experienced sudden regression twice. She highlighted the challenges families face due to lack of awareness and accurate diagnosis, leading to delayed treatment. Shared a story about Ewan, highlighting personal constituent experience related to caring for someone with Down's syndrome.
Andrew Cooper
Lab
Mid Cheshire
Down syndrome regression disorder is a heartbreaking condition that affects many families across the country, but it remains largely under-recognised in our healthcare and support systems. There are no standard diagnostic criteria in current NHS guidelines, research funding is scarce, and few clinicians are trained to recognise or treat the disorder.
Ayoub Khan
Lab
Birmingham Perry Barr
Mr. Khan apologised for any discourtesy and raised concerns about the impact of Personal Independence Payment on people requiring care due to Down’s syndrome regression disorder. Emphasized the need for more awareness of Down’s syndrome regression disorder and highlighted the importance of research.
Damian Hinds
Con
East Hampshire
Down syndrome regression disorder is a sudden loss of previously acquired and present social, motor and language skills. It is clearly a devastating development for any family, compounded by a lack of awareness and misdiagnosis. Stressed the need for more research, better support and care for families of people with Down’s syndrome.
Edward Argar
Con
Melton and Syston
Paid tribute to the debate's importance, highlighting the issue of Down’s syndrome regression disorder and raising questions for the Minister about furthering research supported by the University of Cambridge in 2021 and creating clearer diagnostic and treatment pathways.
Jen Craft
Con
Thurrock
Thanked colleagues for participating in the debate and raised awareness of Down’s syndrome regression disorder, mentioning specific stories shared by other MPs.
Chichester
Stressed the urgent need for investment in research to better understand Down's syndrome regression disorder. Advocated for improved clinical awareness and access to specialist assessments and coordinated care for affected families. Called for coordinated care and lifelong support for those with Down's syndrome, advocating for better recognition of family expertise in the condition.
Jim Shannon
DUP
Strangford
The hon. Member describes a constituent's experience in Newtownards where their child with Down’s syndrome has undergone regression, impacting the family significantly. The MP raises concerns about the support for ageing parents and the impact on families when such parents are diagnosed with serious illnesses like cancer. He calls for more respite care and day support classes to help manage these challenges. Discussed the wider implications for families caring for someone with Down's syndrome.
Josh Dean
Lab
Hertford and Stortford
Supports the importance of research into Down's syndrome regression disorder, highlighting a case where diagnosis was delayed due to lack of understanding in the medical community. Contributed the moving story of Jude and Ruth, focusing on the family implications of caring for a person with Down’s syndrome.
Government Response
Stephen Kinnock
The Minister for Care
Government Response
The Government are committed to improving life outcomes for people with Down’s syndrome, including those who have regression disorder. The Minister welcomed high-quality funding applications from researchers seeking to better understand this condition and to inform enhanced management and care. He also highlighted the importance of raising awareness of the needs of people with Down's syndrome through the implementation of the Down Syndrome Act 2022. Provided an update on the progress made in developing guidance under the Down Syndrome Act, including engagement with individuals and organisations. Mentioned upcoming consultation for feedback ahead of issuing final guidance this autumn. Addressed training requirements and research funding through NIHR. Referred to shadow Minister's specific questions, promising a written response.
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Assessment & feedback
Summary accuracy
About Westminster Hall Debates
Westminster Hall debates are a chance for MPs to raise important issues affecting their constituents and get a response from a government minister. Unlike Prime Minister's Questions, these debates are more in-depth and collaborative. The MP who secured the debate speaks first, other MPs can contribute, and a minister responds with the government's position.