September 2026 saw the defeat of the Edwards Assisted Dying Bill. Thank you for your ongoing and heroic support on this. We asked many times for your support and action to reach decision makers, and we are grateful that they engaged with our community and listened with their hearts as well as minds.

In the immediate aftermath of the Bill, there was a flurry of activity on our social media platforms. The majority of people showed support by liking the posts, but alongside similar groups which campaigned with us on this issue, we also saw a sharp rise in comments with statements like ‘the Bill had nothing to do with Down syndrome’. We even saw comments on other platforms attacking people with Down syndrome who had spoken out about the Bill.

Due to the topical nature of the public debate, social media platforms like Facebook spread those posts much more widely than normal at the time of the vote on the Bill, reaching social media accounts which normally do not interact with us. Some of the comments generated from that exposure showed a lack of awareness of the needs of the Down syndrome community, as well as limited knowledge of what the Bill was proposing. These comments weren’t from regular followers, but since the sentiments appeared on our shared spaces, we wanted to take a moment at the end of September – before we head into Down Syndrome Awareness Month – to address some comments.

Assuming that people have goodwill towards the needs of all communities, and that people generally would support the right of communities to voice the ways that changes to the law and medical practice would affect them, we would like to provide some more information. We also address some other concerns we’ve heard along the way.

‘Down syndrome is not a terminal illness’

The Assisted Dying Bill was for people who are deemed terminally ill with less than six months left to live. People with Down syndrome sadly will also fall into that category, just as often as everyone else.

‘The Assisted Dying Bill was not about people with Down Syndrome’

We were not claiming that this Bill was targeting people with Down syndrome. Our call was for people to take seriously the fact that people with Down syndrome would be uniquely vulnerable to assisted dying.

These points were firmly stated multiple times in the debate:

1. A person with Down syndrome would be eligible under the Equalities Act, if they were deemed to have capacity
   1. The Mental Capacity Act would be used to determine their capacity
   1. Other safeguards would NOT be added, to account for the particular needs of the individual.

All the doors were being held open for the Bill to be applied to people with Down syndrome.

Meanwhile, new research was showing that the Mental Capacity Act was not a suitable framework to lean on to assess consent, and that coercion issues were much trickier than assumed. We suspect that people who commented did not realise our community has its own legitimate concerns that are specific to characteristics of people with Down syndrome. For more information on this recent evidence which validates our concerns about safeguarding, coercion, and the limits of the Mental Capacity Act, please see here.

‘There’s no evidence that assisted dying has actually involved people with Down syndrome anywhere else’

‘Lack of proof’ has sometimes been mentioned, and we have a particular interest in that issue. We would like to see a lot more evidence than we currently have access to.

As a research foundation, we appreciate having a firm and tested basis to build upon. However, as we investigated assisted dying, we found anecdotal evidence building up on one side, and missing statistical evidence on the other side.

Many countries do not release statistics on the underlying intellectual disabilities or physical disabilities of people who apply for and then qualify for assisted dying. Where such information is collected, it may not be publicly available at the level of detail needed to identify particular disabilities or assess their prevalence. Typically the condition that made the person qualify for assisted dying is recorded (ie, terminal cancer).

This means, for example, that we don’t know for certain the number of people with Down syndrome who may have died an assisted death, as the records may only state that the person applied for Assisted Dying or euthanasia, justified by ‘cancer’. However, we do know that in the Netherlands, some people have died by euthanasia, solely justified by what was deemed unbearable suffering from autism or a learning disability.

If any of our readers know of ways to obtain reliable information on statistics like this, please let us know, because we have been unable to find public records that disclose this information. This is a big knowledge gap where we can’t evaluate, despite assisted dying happening in different forms in some countries for decades. To the best of our knowledge there’s no evidence available to support either argument, because the data is not collected or is not accessible. Canada seems to have the most detailed records, but does not yield a published Down syndrome dataset.

One helpful outcome of these extensive debates should be awareness that we need rigorous data collection from countries that have assisted dying, if we want to prove anything about the application of such laws to people with intellectual disabilities.

It would also be interesting if medical practitioners were obliged to fill out record forms in every instance where they suggested assisted dying to a patient, with records explicitly stating the disabilities, social care needs, mental health status, income status, as well as terminal illness status of the patients who had assisted dying suggested to them. Without statistical measurement like this, it’s very difficult to verify patterns. At the moment neither side of the debate can confirm or deny how extensively euthanasia currently affects people with Down syndrome or other intellectual disabilities: how often it is suggested, and how often it is taken up.

We highly commend the work of Professor Tuffrey-Wijne who is carrying out pioneering research which seeks to understand what people with intellectual disabilities themselves understand about Assisted Dying. Despite assisted dying being around for a few decades, it’s the first time anyone has investigated what people with intellectual disabilities think about this issue. This is a good indication of how little we know, and how seldom people with intellectual disabilities are actually consulted.

‘Groups for people with disabilities were using scare tactics’

One criticisms applied to both sides during debates involved the employment of ‘fear mongering’.

People are of course fully entitled to express their fears about a painful death, to raise awareness of this – and this concern should galvanise action to relieve suffering and alleviate those fears. We value the way that the debates around this issue put palliative care in the spotlight.

Fear was justifiably present on both sides of the argument. However, some supporters of the Bill who wanted choice above all else were willing to listen and respond to fears of an unwanted kind of death from one group, but unwilling to take as seriously the fears of other groups.

Certain rare and distressing occurrences were mentioned to galvanise urgency about the need for assisted dying. However, people with Down syndrome face routine sub-standard outcomes in healthcare, leading to avoidable suffering, sometimes in fatal ways. What might be a rare occurrence for an average patient – things like diagnostic overshadowing, medical neglect, failure to consult – can be common, everyday matters for a person with Down syndrome. The moment these issues come into a fatal, irreversible context such as end of life decision making (as seen with the scandal around Do Not Resuscitate Orders during Covid), it’s rational to be afraid about an extremely poor outcome.

We found it regrettable that there was such strong pushback on people with Down syndrome expressing their fears that they might find themselves confronted with a death they didn’t consent to. It was certainly the right time to express those concerns. Our community has poorer experience than average across the board with medical authorities which manage health outcomes. 

Towards better care and better outcomes

As a research organisation, our orientation is towards finding breakthroughs that make a difference to health and wellbeing. We’ve seen massive changes in the past and we believe they can be unlocked in the future too. 

We recognise that quality of life matters. We want fewer terrible and traumatising choices. We also don’t want our community to experience that defending the life of a person with Down syndrome goes against the weight of a system – life is a basic human right. We want more research that will help people with Down syndrome to thrive. We know that other research groups focused on different needs and profiles have exactly the same hopes for the groups that need their expertise. We hope that they will find good answers to some of the terminal conditions that bring suffering and indignity.  

Many individuals from the Down syndrome community had their say on this debate. On many other issues in the past their voices have been muted. We hope this outcome will raise the bar, and that their voices will be taken as seriously on other issues that affect daily wellbeing.

We are grateful to every MP who looked at all the fears and concerns of everyone around the issue of assisted dying, and balanced their judgements as best they could. As before, we do encourage you to thank your MP if they voted in a way that protects our community.