The Foundation Chair, Dr Liz Corcoran was proud to support the first ever Advisory Group Summit recently on Thursday 27th March, 2025, in London at A&O Shearman. The Advisory Group is co-ordinated by the National Down Syndrome Policy Group (NDSPG), which aims to raise issues affecting the DS community, and members of the Advisory Group are adults from across the UK who have Down syndrome. Advocacy is very important to us at the Down Syndrome Research Foundation, as the rich knowledge that comes from lived experience is one of the greatest assets we can possibly have. We have worked to support the establishment of the Advisory Group since it’s inception and lent our expertise to the project.
The group of 76 attendees included 29 adults with Down syndrome, 24 of which are Advisory Group ambassadors. They were joined by guests, speakers and participants from across the country, including Members of Parliament Andrew Cooper and Damien Hinds, who described it as “an excellent inaugural summit”. It was a day of celebration, activism and future planning. The fantastic history and achievements of the Advisory Group were recalled, encouraging everyone present about the power of ‘Experts by Experience’, as James Carter describes himself.
Among the important agenda points covered, Advisory Group members put a spotlight on the following items:
- Discussing issues with the Down Syndrome Act Guidance 2022
- Writing to MPs to ask them to step up and ask Stephen Kinnock, Secretary for Health and Social Care, to push for issuing robust guidance for the Down Syndrome Act
- Session by James Carter on advising a local Integrated Care Board on health issues for people with Down syndrome.
- Session by Ed Daly on his work with his local ICB. Some of his recent pieces of work with them here and the ICB page here.
- Voices of the #IChooseBoard from Cheshire were heard
The Advisory Group Summit gathered at a time when some MPs have been increasingly showing their frustration at the delays to the issuance of the DS Act guidance, with Jack Rankin, MP raising it again in Parliament at a debate the following day on 28th March 2025. Jack Rankin cited his conviction on the issue as being due to the influence of Millie, a constituent who is a campaigner for the DS community.
We continue to be thankful for the supportive voice of Dr Liam Fox for highlighting ongoing concerns with the development of the overdue #DownSyndromeAct Guidance. It is crucial this guidance is fit for purpose & reflects the specific needs of people with Down syndrome.
It has been encouraging to see how Advisory Group members have spoken out and their concerns have been taken up by individual MPs. Further, more MPs have now signed up for the All Party Parliamentary Group on Down Syndrome, which will further amplify the voices of the Advisory Group.
We are confident that the important work undertaken at the Summit will continue to have such positive and far-reaching effects. Congratulations to all our friends at the NDSPG for their inspiring examples and putting together a truly wonderful event!