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

Ethically approved by University College Cork, Ireland and funded by the Lejeune Foundation, the study, titled the DS Biome: Down Syndrome Gut Microbiome Sibling Study explores the gut microbiome in relation to digestive sensitivities, bowel disorders, and age-related conditions such as dementia in individuals with Down syndrome.

Click here to find out more about the study and what’s involved.


Down’s Syndrome Scotland responds to the latest research findings on premature and avoidable deaths within the learning disability population in Scotland
Eddie McConnell, Chief Executive of Down’s Syndrome Scotland reacted to the research findings with dismay, he said: “We should all be appalled at these findings. It is completely unacceptable in 2025 that people with learning disabilities, including people with Down’s syndrome, are dying prematurely from causes of death that are preventable and avoidable.


For our own community of people with Down’s syndrome, we have known for too long that they are dying prematurely. The original research carried out in 2017 by the Scottish Learning Disability Observatory, revealed that people with Down’s syndrome were dying, on average, 28 years earlier than the general population.
What is additionally concerning in these latest findings is that ‘Down’s syndrome’ is identified as the most commonly recorded cause of death among adults with learning disabilities in Scotland.


We need to understand, with some urgency, why medical practitioners are still listing ‘Down’s syndrome’ as a cause of death. Down’s syndrome is a genetic condition, it is not an illness and it cannot kill you. We are deeply concerned that the actual cause of death may be going unrecorded in many of these premature deaths and this leads us to question whether the presenting health condition has been identified and treated, in many of these cases. It is entirely possible that many of these individuals could have
lived longer had their health condition (and not their disability) been fully diagnosed and appropriately treated.


He continued: “When we speak with families, they tell us that there are many clinicians and health professionals who respond positively and provide appropriate care and treatment. However, the experience of other families is not so positive with many of them telling us that medical practitioners and health professionals often see a person with Down’s syndrome instead of seeing a patient who has acute and urgent health needs.


People with Down’s syndrome deserve equal access to good quality healthcare and medical treatment. These new findings suggest that the conflation between disability and health by medical practitioners is still significantly prevalent and could be masking the identification of underlying health conditions and their subsequent treatment.
It is evident from this research, that we still have much to do to challenge perceptions and change practice – many of these premature deaths are avoidable, preventable and treatable.


For the families left behind, there remain many unanswered questions about what happened to their loved ones in their final days of their lives.
We should all be greatly concerned at what these findings are telling us.”

To read the full news release from SLDO (Scottish Learning Disability Observatory) here and for the SLDO Mortality Briefing here

Coeliac disease is more common in people with Down syndrome compared to those without Down syndrome. It can develop at any age throughout a person’s life. Brian Chicoine and the team at the Adult Down Syndrome Centre in Illinois have created a free set of visual resources on coeliac disease which include a general overview of celiac disease, a list of gluten-free foods, and tips for eating gluten-free at restaurants and parties. You can view these here: Celiac Disease Visuals | Adult Down Syndrome Center

If you have any concerns about any health matters, please contact your GP or healthcare professional in the first instance for appropriate medical advice and guidance.

We are delighted to welcome the publication of the Scottish Standard Care Pathway for Babies Born with Down’s syndrome and pleased to have collaborated with our colleagues across the NHS community in Scotland in developing this critical resource. The pathway is intended to guide the initial care for a newborn baby with a diagnosis of Down’s syndrome. It is intended for use by all health professionals involved in the care of babies with Down’s syndrome across Scotland . Having a pathway in place means health professionals can have the confidence in sharing the news that the baby has Down’s syndrome, using the right language.  It will also improve their understanding around caring for babies born with Down’s syndrome and supporting them and their parents through the neonatal period.

Download resource here

Would you like to learn more about your child’s sleep?

(front: Patricia Jackson, Emma Telford; back: Taylor Gilchrist, Jessica Street, Lizzie Hill, Florian Gahleitner, Emma Carruthers)

Children with Down’s syndrome (Ds) experience a higher incidence of sleep problems than their typically-developing peers. Untreated sleep problems in children (with and without Ds) can lead to sleepiness, behavioural and emotional problems, cognitive impairment, reduced quality of life and reduced academic achievement.

A study by Dr Rebecca Stores at the University of Portsmouth a number of years ago demonstrated that group education of parents using a video and booklet can offer some benefit regarding behavioural sleep problems in children with Ds. A study is currently underway in Scotland, by researchers and sleep specialists from the Royal Hospital for Children & Young People Edinburgh, to evaluate the effectiveness of an updated version of the education package on the sleep and quality of life of young children with Ds and their parents/ carers. Should the revised package prove effective, it is hoped that it will be made available to families across the country, both with and without Ds.

Rest-Ed, funded by a grant from Edinburgh Children’s Hospital Charity, are looking to recruit parents/ carers of young children (aged 6m-5yrs) with Ds living in Scotland to take part in the evaluation process.

If you would like to participated in this study, please email the REST-Ed team at loth.rested@nhslothian.scot.nhs.uk, or speak to the lead investigator, Dr Florian Gahleitner on 0131 312 0453.

Learn and Thrive has launched the latest series as part of their Learning for Life project, which covers personal health, emotions, relationships, and appropriate behaviour. New material (in sets of videos) is released periodically. The ‘Understanding Health & Prevention’ series consists of the following videos:

You can read more about the new series here. 

Annual Health Checks – adults aged 16+

The Scottish Government are rolling out Annual Health Checks for people with learning disabilities (aged 16+). Some Local Health Boards have already contacted people with a learning disability in their area to invite them for their first Annual Health Check and others will be doing so throughout this year.

These Annual Health Checks will be a key vehicle for identifying any underlying health conditions that people with Down’s syndrome may have and then moving quickly to appropriate treatment. A well-executed Annual Health Check can save lives.

We have developed several resources to help support all those involved in the Annual Health Checks to get the most out of them and to raise awareness and understanding of the specific health conditions specifically associated with having Down’s syndrome. You can find out more and download these resources below.

If you would like any further information or support regarding accessing Annual Health Checks or would like more information about health conditions associated with Down’s syndrome our Family Support team are here to help.

LETS TALK ABOUT ANNUAL HEALTH CHECKS – easy read (for adults with Down’s Syndrome)

ANNUAL HEALTH CHECKS – PARENTS & CARERS INFORMATION

ANNUAL HEALTH CHECKS – PROFESSIONALS INFORMATION

Public Health Scotland has published details about this year’s Winter Flu and COVID-19 Vaccination Programme.

Individuals with Down’s syndrome aged 6 months+ are eligible for both the flu and COVID winter vaccines as detailed below.

We are very concerned that unpaid carers are not shown as being eligible for the 2024 Winter COVID vaccine. We are currently in contact with Public Health Scotland and The Scottish Government to challenge this as we know that many of you in our community are the sole (unpaid) carer for a loved one with Down’s syndrome and will be highly anxious about contracting COVID and being unable to care for them. We will update you once we have more information on this. 

The Joint Committee on Vaccination and Immunisation (JCVI) recently published its advice to UK governments on the forthcoming COVID-19 Vaccination Programme. Similar to previous Winter Vaccination Programme, the JCVI’s advice is to offer the vaccine to those at high risk of serious disease and who are therefore most likely to benefit from vaccination. You can read the JCVI statement here.

Scotland’s Winter Vaccination Programme will be delivered at local level by Health Boards across the country.

Invitations to book or attend an appointment are being sent to those who are eligible.

Who will be offered the Vaccines?

You’ll be offered the Flu Vaccine if you’re:

You’ll be offered Flu and Coronavirus Vaccines this winter if you’re:

If you need to book or rearrange a vaccine appointment for children under 12 years, you should call the number on your child’s letter.

Please click on the links below for more details:

The Coronavirus (COVID-19) Vaccine and Health Conditions – See sections titled ‘Adults aged 16 and over with health conditions’ and ‘Children aged under 16 with health conditions’. Down’s syndrome is an eligible condition under Chronic neurological disease or condition.

COVID-19: the green book, chapter 14a – See pages 24 and 26: ‘Table 3: Clinical risk groups for individuals aged 16 years and over’ and ‘Table 4: Clinical risk groups for individuals aged under 16 years’. Down’s syndrome is an eligible condition  under Chronic neurological disease.

Scotland’s Winter Vaccination Programme has started – Public Health Scotland

Winter Vaccines – NHS Inform

Flu Vaccine – NHS Inform – See section titled ‘Eligible Health Conditions’. Down’s syndrome is an eligible condition under Chronic neurological disease (from 6 months or older)

Child Flu Vaccine – NHS Inform

The Coronavirus (COVID-19) Vaccine – NHS Inform

Winter Vaccine Leaflets – NHS Inform

Information in Easy Read about the Winter Flu and COVID-19 Vaccines – Public Health Scotland

Scottish Vaccine Update – Issue 83 – Scottish Vaccine Update – Public Health Scotland

Please contact our Family Support Service Team on 0300 030 2121, email familysupportservice@dsscotland.org.uk or use live chat (when available) for any enquiries relating to the Winter Flu or Covid-19 Vaccination Programme.

We wanted to let you know that Healthcare Improvement Scotland have published the new Pregnancy Screening draft standards and these are now open for consultation. 

These standards are for pregnancy screening related to:

The standards are a revision of the 2019 standards for Pregnancy screening previously referred to as Fetal anomaly screening. The standards will support the delivery of this aspect of the national pregnancy screening programme.

We, Down’s Syndrome Scotland, have been involved as a Stakeholder in the Pregnancy Screening Standards Development and Editorial Groups to ensure that they are inclusive and respectful of our community. We are pleased to share that in response to our request the word ‘Fetal’ will no longer be a term used within pregnancy screening when referring to a baby during pregnancy.  

You can read the standards on Healthcare Improvement Scotland’s website here.

You can give feedback on the draft standards by completing an online survey here.

The consultation on the draft standards closes at 5pm on 19th August 2024.

If you have issues completing the form, you can contact Healthcare Improvement Scotland at his.screeningstandards@nhs.scot.

Healthcare Improvement Scotland will collate comments received on the standards at the end of the consultation period and use these to inform the development of the final standards.The final Pregnancy Screening standards are due for publication in December 2024.

If you have any further questions or would like to speak to us about any of this you can email us at familysupportservice@dsscotland.org.uk or call us on 0300 030 2121.