Assisted Dying Bill's Second Reading: House of Lords Must Respond to Disabled People's Concerns

Earlier this year, an open letter co-ordinated by the National Down Syndrome Policy Group (NDSPG) and signed by sixty-one organisations representing Disabled people across the UK set out detailed concerns and urged politicians to ensure the legislation "does not inadvertently harm the most vulnerable in society." Evidence submitted by the All-Party Parliamentary Group on Down Syndrome (APPGDS) echoed these concerns, warning that the Bill without firm guarantees and a robust legal framework, poses a significant risk to Disabled individuals. Those concerns, however, were not addressed as the Bill passed through the Commons.

The (NDSPG) has now turned its focus to the House of Lords, launching a campaign to amplify fears. Central to the campaign is a letter from actor and author Tommy Jessop, shared widely under the hashtags #NotCollateralDamage and #SafeNotSorry which includes his heartfelt appeal: “I am asking for your protection. Please keep us safe.”

The NDSPG is urging Peers to consider the long-term consequences of legalising assisted dying, particularly for people with Down syndrome and other learning disabilities, and to ensure that their voices are properly heard in shaping the future of this legislation.

Avoidable Premature Deaths Among Disabled People

The newly released LeDeR (Learning from Lives and Deaths) 2025 report shows that people with learning disabilities, including those with Down syndrome, continue to die almost 20 years earlier than the general population, with almost half of these deaths considered avoidable. The report highlights persistent failings in access to healthcare, timely treatment, and reasonable adjustments, showing that with the right support and equal standards of care, many of these lives could have been extended.

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.

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 challenges around decision-making 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. Compassion for one group, no matter how well-meaning, must never take precedence over the safety, dignity, and protection of our most vulnerable individuals. The House of Lords must fulfil its duty to scrutinise this bill thoroughly and ensure that this right to safety is never compromised.”

Tommy Jessop, actor, author, and NDSPG Ambassador, said:

"Some bill committee members said things said things which hurt and worried us. We were told we would have a voice, but we were not allowed to speak. We were told there would be rules to keep us safe, but that has not happened.

We 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 but they are wrong, our lives are worth living and we are not collateral damage.

Please protect us. Please listen to us even if we find it hard to communicate. There needs to be proper safeguards. 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.

The House of Lords must stand up for Disabled people and make sure we are protected with strong safeguards.”