Kim Leadbeater’s Assisted Dying Bill is now headed towards the Third Reading in parliament. The Down Syndrome Research Foundation UK remains deeply concerned about the substance and the process of this bill.
DSRF-UK submitted written evidence to the Public Bill Committee in January 2025, outlining our reasons to believe that the Assisted Dying Bill will cause disturbing consequences for individuals with Down syndrome.
Along with many other groups, DSRF UK also co-signed an open letter issued by the National Down Syndrome Policy Group, asking for urgent attention on the issues raised by the Down syndrome community.
The Bill has recently passed through the committee stage, where a selected panel looked over the Bill and scrutinised amendments. 393 amendments were requested by MPs opposed to the Bill. Only 30 total amendments have been accepted, with a mere 7 of these changes being likely to increase the original safeguarding of the bill. The majority of the committee panel members with power to vote are holders of firmly established pro-euthanasia stances. It is unsurprising that issues with the Bill are hard to address.
We had hopes that one amendment would provide specific relevant protections. Amendment 368 aimed to provide additional safeguards for people with Down syndrome and prevent misuse of the Assisted Dying Bill, by invoking statutory guidance from the Down Syndrome Act 2022, which will soon be issued to meet the needs of adults with DS. This amendment was debated during the sixteenth sitting of the Public Bill Committee on 4 March 2025, and was rejected by the committee. Disturbingly, Kit Malthouse MP, co-sponsor of the Bill, followed the rejection of the amendment with a suggestion that criticism of the results of this vote should be silenced.
Kim Leadbeater made a public suggestion to meet with DSRF UK and NDSPG to discuss concerns, but no such meeting has taken place to date. This follows a wider repeated pattern of decision-making that excludes groups which advocate for the rights of people with disabilities.
We have highlighted data on concerns relevant to the DS community, in relation to assisted dying and euthanasia in other jurisdictions.
We have also found the research and oral evidence of Professor Tuffrey-Wijne, from Kingston University London, to be highly informative for this issue. Professor Tuffrey-Wijne is the world’s first Chair of Intellectual Disability and Palliative Care, and was a guest speaker at a recent discussion of the implications of the Bill with DSRF UK’s Chair, Dr. Liz Corcoran.
The Report Stage of the Bill is now scheduled for Friday 16th May 2025.
We are looking at an Assisted Dying Bill that does not provide adequate safeguards or address concerns for the Down syndrome community. In the lead up to the next stage of the Bill, DSRF UK will continue to publicise information relevant to our community, and signpost ways that you can make your voice heard.