Kelly Stuart
05/02/2025
News
All Wales People First has supported an open letter which raises concerns about the potential impacts of making assisted dying legal.
National Down Syndrome Policy Group’s press release, including a link to the open letter…

Assisted Dying Committee Must Respond to Concerns of People with Down Syndrome and Other Learning Disabilities
An open letter signed by 61organisations representing the interests of disabled people across the UK has raised serious concerns about the potential impacts of legalising assisted dying, urging Parliament to ensure the legislation “does not inadvertently harm the most vulnerable in society.”
The letter, drafted and signed by the National Down Syndrome Policy Group (NDSPG) alongside other groups advocating for disabled rights from across the UK, highlights the need for robust engagement with people with Down syndrome and learning disabilities to address the medical and social care challenges faced by these communities. It calls on MPs to ensure their voices are considered in deliberations surrounding Kim Leadbeater’s Terminally Ill Adults (End of Life) Bill, currently at its committee stage in the House of Commons.
The NDSPG stresses that as part of their duties, MPs must consider the long-term implications of legalising the right to assisted dying, particularly for people with Down syndrome and learning disabilities.
Avoidable Premature Deaths Among People with Disabilities
Research published in The Lancet in 2023 revealed that people with Down syndrome and learning disabilities die, on average, more than 20 years earlier than the general population, with many deaths deemed avoidable if they had received the same level of health care as other people in the general population.
During the Covid-19 pandemic in 2020, the National Medical Director had to remind NHS staff that:
“The terms ‘learning disability’ and ‘Down’s syndrome’ should never be a reason for issuing a DNACPR [Do Not Attempt Cardiopulmonary Resuscitation] order or be used to describe the underlying, or only, cause of death … Learning disabilities are not fatal conditions.”
Despite this directive, an analysis published by King’s College London in 2021 revealed ongoing failures, with significant instances of poor practice surrounding DNACPR orders for individuals with learning disabilities.
A Call for Caution and Safeguarding
The Assisted Dying Bill raises complex ethical, legal, and social issues, especially concerning individuals with learning disabilities and their mental capacity. Accessing mental capacity in individuals with learning disabilities is complex and presents significant challenges. The Mental Health Act recommendations can be conflicting and open to interpretation and abuse, providing no failproof safeguard for the vulnerable.
The open letter warns that assisted dying laws could place individuals with Down syndrome and learning disabilities at heightened risk of coercion or pressure, especially given historical evidence of inequalities in healthcare. It calls for a cautious, inclusive, and comprehensive review of the bill. Lessons from other countries where assisted dying has been legalised underscore the need for Parliament to exercise its safeguarding duties to avoid unintended harm.
Dr Liam Fox MP, when introducing the Down Syndrome Bill in 2021, noted that for the first time, many individuals with Down syndrome will outlive their parents, raising unique challenges around end-of-life care. This reality, combined with concerns over decision-making capacity and susceptibility to coercion, underscores the importance of full Parliamentary scrutiny of the proposed legislation.
Background
The National Down Syndrome Policy Group has long raised concerns about the poorer health outcomes and systemic inequalities experienced by people with Down syndrome. The group worked closely with Dr Liam Fox MP to shape the Down Syndrome Act 2022, which became law in April 2022. This legislation requires public authorities to consider the specific needs of people with Down syndrome when commissioning or providing services in health, social care, and education.
According to NHS Inform, most individuals with Down syndrome have mild to moderate learning disabilities.
The National Down Syndrome Policy Group is a UK based charity comprising of officers with and without Down syndrome which was established to raise the profile of the unmet needs of people with Down syndrome.
Rachael Ross MBE, Founding Officer, NDSPG, said:
“Everyone deserves access to compassionate end-of-life care, and the assurance of a dignified death must be available to all. However, the proposed Assisted Dying Bill fails to uphold this ideal. We must carefully consider the evidence and heed the warnings from all other countries that have implemented similar legislation. These experiences demonstrate in every case that no set of safeguards can prevent the scope of such laws from expanding, nor can they guarantee the safety of people with learning disabilities and the most vulnerable in society during their most fragile moments.
Our government bears a fundamental duty to safeguard protected minorities and those at risk in our society. If there is even a hint of uncertainty regarding the potential ramifications of this legislation on their well-being, it cannot proceed. The objectives of one group, no matter how well-meaning, must never take precedence over the safety, dignity, and protection of our most vulnerable individuals.”
Tommy Jessop, actor, author, and NDSPG Ambassador, said:
“A lot of people with Down syndrome are worried about the assisted dying law. We are worried about being pressurised into it. We know that some healthcare staff do not think our lives are worth living. They are wrong.
Please protect us from this. Please listen to us even if we find it hard to communicate. Please keep us safe.”
Bethany Asher, award-winning actor, added:
“People with Down syndrome and other disabilities are already not taken seriously, and it is difficult to have our voices heard.
I am worried that in years to come when my mum isn’t here any longer, I may be pressured to end my life when I didn’t want to because I may be seen as a burden on the health service if they don’t want me anymore.”
For more information, see the National Down Syndrome Policy Group website www.ndspg.org or email contact@ndspg.org