As DSRF’s regular followers will know, we have been raising awareness about Kim Leadbeater’s Assisted Dying Bill. This Bill will affect England and Wales and is moving forward rapidly in Westminster, and we believe it will present serious dangers to the Down’s syndrome community in many ways. However, at the same time, another similar Bill is being pushed forward, which will affect people in Scotland.

On Tuesday 13th May, MSPs will debate and vote on Liam McArthur’s Assisted Dying for Terminally Ill Adults (Scotland) Bill. If this bill becomes law, it would have devastating consequences for disabled people across Scotland, including people with Down’s syndrome and other intellectual disabilities, as well as their families.

For the past 30 years, the Down Syndrome Research Foundation UK has worked to extend the life, health and wellbeing of people with Down’s syndrome through research and advocacy. We have deep concern about any change to the law to legalise assisted dying on behalf of our community. We believe that introducing assisted dying will be a catalyst for negative change in healthcare, which will adversely affect people with intellectual disabilities, including those with Down’s syndrome. 

The Health, Social Care and Sport Committee in Scotland, which has been receiving evidence and considering the bill ahead of the debate and vote on Tuesday 13th May, published its report on 30th April – less than 2 weeks before the debate. In the report, the Committee notes “the compelling evidence it has heard concerning the significant structural inequalities and barriers to services and support disabled people face every day. It recognises that these and the negative societal attitudes that lead disabled people to feel their lives are devalued need to be urgently and systematically addressed.” This bill is not being introduced in a neutral context. Disabled and otherwise vulnerable people in Scotland are already struggling as mentioned.

The Committee Report states that MSPs will want to give “further consideration” to whether the bill strikes an “appropriate balance” in terms of its protections for disabled people. However, very recent experience from Westminster, where the Committee scrutinising the bill rejected an amendment to specifically protect individuals with Down’s syndrome, shows that even when given the opportunity to stand up for vulnerable people, politicians don’t always listen. The time to stop this bill is NOW, at Stage 1, before it is too late.

We are deeply concerned about the risks of coercion and undue influence. In particular, people with Down’s syndrome and intellectual disabilities are at significant risk of coercion and undue influence, in part because of their need to trust and rely upon caregivers and medical professionals. The evidence supports this. 

Informed consent also raises serious issues. The evidence shows a clear need to ensure a higher threshold of care to make reasonable accommodation for people with intellectual disabilities. The onus is on healthcare professionals, not people with intellectual disabilities, to communicate with skill, give additional time, be willing, be patient and be present. Due to inadequate awareness and training, this presents challenges in the best of circumstances, but even more so in a context where senior doctors warn that the NHS in Scotland as we know it may not “see out another year” due to the pressure it is under.

We are also concerned about the wider impact on healthcare and support for people with intellectual disabilities. The recent experience of people with Down’s syndrome is not a good one. During the Covid-19 pandemic, “temporary” changes put the human rights of people with special needs on hold and prevented them from receiving appropriate care, with deadly consequences. People with intellectual disabilities, including those with Down’s syndrome, had a death rate six times higher than average. It does not require a huge leap of the imagination to expect a similar dynamic, should a state-sanctioned assisted dying service be implemented.

This bill, which puts vulnerable people at risk of harm, may well become law unless we speak out for our community today. 

Please use the simple tool linked here to send an email to all your MSPs, urging them to prioritise improved support for disabled and otherwise vulnerable Scots, including people with Down’s syndrome and intellectual disabilities. Even if you or your MSPs support the principle of assisted dying, this bill is not the way forward for Scotland.

Please take action today on behalf of your friends and family who are vulnerable, or for yourself. You will know from your lived experience, and of course, the evidence backs this up, that the overwhelming majority of people with Down’s syndrome are happy and love their lives. This is often invisible to those in public office – let’s remind MSPs! 

Please write to your MSPs today and ask them to protect people with Down’s syndrome and intellectual disabilities by voting against this bill at Stage 1 on Tuesday 13th May!

If you receive a response from any of your MSPs, please email their response to us: dsrf@dsrf-uk.org