House of Commons · Westminster Hall
19 March 2025 · 9 other contributors · 10,453 words
Opened by Graham Stuart Con Beverley and Holderness
Responding minister: Karin Smyth
Summarised by AI from the official record, so it can contain mistakes.
Graham Stuart raised concerns about down’s syndrome in Westminster Hall. A government minister responded.
Key points
Key requests to Government
The Government should build and issue effective cross-ministerial guidance as promised in the Act, engage key stakeholders properly, empower Ministers to implement the Act fully, improve healthcare outcomes for people with Down syndrome, and ensure that every integrated care board appoints a named executive lead at board level to drive better outcomes.
MPs spoke in turn to share their views and ask questions. Here's what each person said.
Opened the debate
The Down Syndrome Act 2022 received Royal Assent three years ago but has not been implemented. Draft guidance produced does not adequately cover the specific needs of people with Down syndrome, reducing them to a subset of learning disabilities. This limited perspective fails to provide tailored support for speech and language therapy required by individuals with Down syndrome.
Discussed the significance of the Down Syndrome Act and called for robust, inclusive guidance reflecting community needs.
The MP thanked the lead MP for securing the debate and shared his experiences meeting constituents with Down’s syndrome. He emphasized the positive impact of local support groups like Get On Downs in empowering individuals.
Expressed gratitude towards Jen Craft for sharing personal experiences, emphasised the importance of raising awareness about Down’s syndrome ahead of World Down Syndrome Day.
Acknowledged contributions from MPs, including Graham Stuart and Jen Craft, in raising awareness for Down syndrome issues. Highlighted the need for scrutiny of guidance and action on implementation.
Congratulates the right hon. Member for Beverley and Holderness on securing this important debate. Emphasised the importance of supporting individuals with Down syndrome and their families, highlighting personal experiences.
Discussed challenges faced by people with Down syndrome in accessing support, especially through EHCP delays and post-18 care gaps. Emphasised the importance of charitable organisations like Chichester and Arun Down Syndrome Support Group.
Provided inspirational examples of individuals with Down syndrome from Northern Ireland.
Smyth emphasised the importance of developing guidance that is Down syndrome-specific while also considering overlaps with other genetic conditions and learning disabilities. She highlighted employment as a crucial aspect for improving life outcomes.
The MP discussed the importance of the three pillars in supporting individuals with Down’s syndrome: healthcare, education, and employment. She highlighted current initiatives like the NHS plan, curriculum changes, and the 'Pathways to Work' programme. Supported the Act's simple yet effective nature in providing essential support for people with Down syndrome.
Government Response
Karin SmythThe Minister for Secondary Care
Acknowledges the importance of the Down Syndrome Act and expresses commitment to its implementation. The Government aims to develop statutory guidance under the Act, intended for consultation by summer. Work is underway to ensure that people with Down syndrome receive necessary care and support in their communities.