Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what stakeholder engagement she (a) has had and (b) plans to have to develop guidance on the Down Syndrome Act 2022; and whether she plans to engage stakeholder groups representing other genetic conditions with features that overlap with those in Down syndrome.

Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)

We launched a National Call for Evidence in July 2022 to inform the development of the Down Syndrome Act Guidance, and this remained open for 16 weeks to ensure as many people as possible were able to contribute their views. As part of this call for evidence we also held in-person stakeholder engagement events, including with stakeholder groups representing other genetic conditions. We intend to publish the findings from the Call for Evidence shortly. More recently, on 20 November, the Department hosted a symposium for Down Syndrome leads within integrated care boards. The symposium included experts in Down Syndrome and people with lived experience.

The Department is establishing an advisory group, which I will oversee, to inform our work on the development of the guidance. We will continue to engage with stakeholder groups representing other genetic conditions. I attended and spoke at the 22q11 Syndrome All Party Parliamentary Group reception this month, hosted by the hon. Member for Banff and Buchan.