Asked by: Karin Smyth (Labour - Bristol South)
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.
Mentions:
1: Suzanne Webb (CON - Stourbridge) apprenticeships, thereby ensuring parity of opportunity for those with learning difficulties, such as those with 22q11 - Speech Link
Mentions:
1: Lord Farmer (CON - Life peer) of what these genetic conditions can entail by focusing on the second most prevalent after Down’s: 22q11 - Speech Link
2: Baroness Uddin (Non-affiliated - Life peer) The Down’s Syndrome Association, the National Down Syndrome Policy Group and Mencap are the experts and - Speech Link
Mentions:
1: Sally-Ann Hart (CON - Hastings and Rye) with Down’s syndrome. - Speech Link
2: Greg Smith (CON - Buckingham) with Down’s syndrome. - Speech Link
3: Meg Hillier (LAB - Hackney South and Shoreditch) with Down’s syndrome. - Speech Link
4: Liam Fox (CON - North Somerset) with Down’s syndrome. - Speech Link
5: Mark Pawsey (CON - Rugby) with Down’s syndrome. - Speech Link
6: John Lamont (CON - Berwickshire, Roxburgh and Selkirk) with Down’s syndrome. - Speech Link
7: Lia Nici (CON - Great Grimsby) with Down’s syndrome. - Speech Link
8: Liam Fox (CON - North Somerset) with Down’s syndrome. - Speech Link
9: Liam Fox (CON - North Somerset) with Down’s syndrome. - Speech Link
10: Robert Buckland (CON - South Swindon) with Down’s syndrome. - Speech Link
11: Charles Walker (CON - Broxbourne) She has Down’s syndrome.’” - Speech Link
12: Suzanne Webb (CON - Stourbridge) While Down’s syndrome is caused by having an extra chromosome at birth, DiGeorge syndrome is caused by - Speech Link
Children with genetic conditions, such as 22q11 deletion syndrome, need specialist support to prevent any loss of learning & social skills due to the pandemic. #FamilyHubs should be ‘one-stop shops' coordinating support for families with disabled children https://t.co/OxZgjMmMDm https://t.co/SmaoKBaikT
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Mentions:
1: Lord Farmer (CON - Life peer) deletion syndrome, and (2) other genetic conditions, receive specialist support to address and prevent - Speech Link
2: Lord Shinkwin (CON - Life peer) My Lords, the absence of a diagnosis or late diagnosis of 22q11 deletion syndrome means an inevitable - Speech Link
3: Baroness Berridge (CON - Life peer) My Lords, as I understand it, this is the second most prevalent genetic disorder after Down’s syndrome - Speech Link
4: Baroness Stuart of Edgbaston (CB - Life peer) Department of Health, that organisations such as Max Appeal, which care particularly for children with 22q11 - Speech Link
Mentions:
1: Baroness Eaton (CON - Life peer) My Lords, 22q11 syndrome is a common neurodevelopmental disability hiding in plain sight because it is - Speech Link
2: Baroness Blackwood of North Oxford (CON - Life peer) Postural tachycardia syndrome, which I have, causes a wide range of autonomic symptoms. - Speech Link