Dear Community,
We are writing to let you know that the Terminally Ill Adults (End of Life) Bill on Assisted Dying is now at the committee stage. This is the time to bring up the most difficult questions to politicians for further consideration, and put a spotlight on factors that were not adequately debated at the second reading when it passed with a majority of 330 votes to 275.
There are many major issues with the Bill, and we would like to highlight and encourage you to speak about with your MP, and to contact the House of Lords about. Please be aware that the Bill has been rushed through and extremely important points are at risk of being forgotten or totally unheard. If politicians hear and take on these urgent concerns, they can withdraw their support at the next parliamentary vote, and we could have a very different outcome.
TIPS: How to Submit Evidence for the Assisted Dying Bill
The Committee is reviewing the Bill and any proposed changes. Here’s what you need to know:
- What to Include: Focus on issues in the Bill where you have expertise or relevant facts. Start with a short introduction about yourself (or your organisation) and a summary of your points- from your experience so far how might it affect your loved one’s life/death.
- Format: Submit a Word document, up to 2,000 words, with numbered paragraphs. Add extra details or stats in numbered annexes if needed.
- Keep it Original: Don’t copy material published elsewhere, but you can reference it (include links).
- Avoid Legal Matters: Don’t comment on anything currently in court.
- Confidentiality: If you want your evidence to stay private, explain why in your email.
How to Send: Email your submission to tiabill@parliament.uk with your name, address, phone number, and email.
Don’t wait—send your evidence now. You can submit more later if the Bill is amended.
The first issue is the potential impact that assisted dying could have on the DS community. There are important reasons why people with intellectual disabilities would likely become more vulnerable to the abuse of euthanasia laws than many of their peers. We have highlighted these issues on our blog.
-
Risk of Coercion and Autonomy Issues: Studies indicate that vulnerable populations may be more susceptible to undue influence. This raises ethical concerns around consent for people with intellectual disabilities, and proponents of the Bill have been unable to give reassurances about how it could be known whether or not someone was coerced into assisted dying.
-
Need for Supportive Care: Government reports advocate for enhanced health and social support for disabled individuals (Department of Health and Social Care, 2020), emphasising care improvement over assisted death options. Euthanasia should never be posed as an alternative to due care.
-
Societal Impact and Stigmatisation: Legalising assisted dying can devalue lives with disabilities, which may reinforce negative stereotypes. Ableist measures used to judge quality of life are frequently applied to the disabled, despite the way disabled individuals value their own lives.
It is a real risk that a perfect storm of monetary and personnel pressures in the UK healthcare system, added to perspectives that devalue the lives of people with disabilities, could culminate in time with assisted dying being justified on the basis of intellectual disability. If you have a relative, child or grandchild who has DS, we urge that you use your voice now to speak about your fears and concerns, to protect their rights far into the future.
Before the UK rushes to introduce assisted dying, we firmly believe that independent research should be carried out to bear the burden of proof that such deaths are as peaceful and painless as they are claimed to be. If no jurisdiction that allows assisted dying is able to provide evidence on this that are research based, it leaves many questions unanswered. The whole argument of providing a peaceful and painfree death may be resting on a non-existent foundation.
We strongly encourage you to raise these concerns and any others you have.
If you have relevant expertise to contribute (a professional or carer or member of the DS community), the Call for Evidence is now open for the next two weeks only – you can find how to submit your written views for consideration here:
How Members of the LD Community Can Submit Evidence
If you’re part of the learning disability (LD) community, your voice is crucial. The Committee wants to hear personal, relevant experiences and concerns about how the Assisted Dying Bill could impact people with disabilities. Here’s what to include in your evidence:
- Personal Stories: Share how the Bill might affect you or someone you care for. For example, describe concerns about coercion, autonomy, or the value society places on lives with disabilities.
- Practical Impacts: Highlight potential risks, like reduced access to proper care or how vulnerable individuals could be pressured into assisted dying.
- Support Needs: Emphasize the importance of improving healthcare and social support for people with disabilities instead of introducing assisted dying.
- Call for Safeguards: Suggest protections to prevent abuse and ensure people with disabilities are treated with dignity and respect.
- Request for Research: Point out the need for more studies on how assisted dying affects people with intellectual disabilities and their families.
Your evidence doesn’t need to be long or technical. Write from your own experience, keeping it clear and focused. Submit your evidence as a Word document to tiabill@parliament.uk, and include your name, contact details, and a brief introduction about yourself.
Your story can make a real difference—submit your evidence today.
To raise the above issues and any others with your MP, you can contact your MP using the UK Parliament’s MP Finder tool:
To contact members of the House of Lords and let them know your perspective on this, please follow the steps here:
https://www.parliament.uk/business/lords/whos-in-the-house-of-lords/get-in-touch-with-members/
Please do give this issue reflection and urgent attention. There isn’t much time to make a contribution that could change a politician’s mind, but at this stage we genuinely do have that opportunity.
With many best wishes and hopes for 2025,
The Down Syndrome Research Foundation UK