Statement on the Assisted Dying for Terminally Ill Adults (Scotland) Bill
13 May 2025
Down’s Syndrome Scotland (DSS), the charity that supports and advocates for people with Down’s syndrome and their families in Scotland, remains concerned about the implications of the Assisted Dying Bill currently being considered by the Scottish Parliament.
While we recognise the Bill’s definition of ‘terminally ill’ states that a person is not considered terminally ill solely because they have a disability (as defined by the Equality Act 2010) or a have a ‘mental disorder’ (as defined by the Mental Health Act 1983), the lived experience of our members does not allay the fear that, in practice, people with Down’s syndrome are still experiencing discrimination including non-prioritisation for treatment in some healthcare settings, which can result in their premature and avoidable deaths[1][2].
It is in this context – the reality of what our members have experienced in practice – that we do not believe the safeguards, currently written into the Bill, would sufficiently address that fundamental concern.
We are also concerned about coercion and pressure on disabled people who might be seen as – or feel they are seen as – a ‘burden’ or ‘less valuable’, leading them to request assisted dying when they may not genuinely desire it for themselves.
[1] O’Leary et al. Early death and causes of death of people with intellectual disabilities: A systematic review. J Appl Res Intellect Disabil 2018a;31(3):325–342. doi: 10.1111/jar.12417.
[2] O’Leary et al. Early death and causes of death of people with Down syndrome a systematic review. J Appl Res Intellect Disabil 2018b;31(5):687-708. doi: 10.1111/jar.12446
We recognise that this is a complex and sensitive issue and that there are differing views even within the disability community, where some advocate for autonomy and choice under their right to a private life (Article 8 of the Human Rights Act 1998).
Down’s Syndrome Scotland’s position of concern is informed by the lived experience of our community which was evident, at its worst, during the pandemic when their lives were deemed less valuable and, in a number of cases, they were not prioritised for treatment and ‘Do Not Resuscitate Orders’ were wrongly put in place[3]. It would be wrong to assume that the ignorance and prejudice which underpinned unacceptable clinical decision-making at that time, is something that only occurred in the pandemic years.
It is the potential unintended consequences of the Assisted Dying Bill that cause us most concern and until the current inequalities in health care and treatment experienced by people with Down’s syndrome in Scotland are fully addressed, our concerns about this Bill remain.
Downs Syndrome Scotland
T: 0300 030 2121 | E: info@dsscotland.org.uk | W: www.dsscotland.org.uk
A Charitable Company Limited by Guarantee, registered in Scotland No. 356717. Charity No. SC011012
[3] Scottish COVID-19 Inquiry: https://www.covid19inquiry.scot/evidence/witness-statement-provided-edward-mcconnell-behalf-downs-syndrome-scotland-dated-06112023