Down’s Syndrome Association: how are we improving health outcomes?

As part of our A NICE Life campaign, the Down’s Syndrome Association discusses the actions it is taking to improve health outcomes for people with learning disabilities.

The Down’s Syndrome Association (DSA) has over 50 years of experience providing information, advocacy, training, and support to people with Down’s syndrome of all ages, their families, and the professionals who work with them.

We regularly engage with the Department of Health and Social Care, the Department for Education, the NHS, NICE, and other government departments. We also work with Integrated Care Boards (ICBs) across England and sit on the Learning Disability Ministerial Advisory Group for the Welsh Government.

We are dedicated to promoting inclusive participation and collaborating closely with “Our Voice,” a diverse group of individuals with Down’s syndrome. This group meets regularly to help shape and inform our work. Members of Our Voice engage in various projects, provide guidance, and share their opinions about our initiatives.

Some members meet weekly, while others participate in focus groups for specific projects. At the DSA, we strive to create an inclusive environment where everyone can participate and contribute to our efforts.

ICB support and training

Over the past few years, we have been working directly with ICBs across England and offering several free 90-minute online training sessions for health professionals.

This includes information about the health profile of people who have Down’s syndrome, the need to avoid diagnostic overshadowing, a checklist for annual health checks, and how to avoid health inequalities for individuals with Down’s syndrome.

We also provide training on ageing and dementia, focusing on early recognition and support, mental capacity, and supported decision-making to ensure individuals with Down’s syndrome can make informed healthcare choices. Our online training aims to equip professionals and parents/carers with the knowledge to deliver inclusive, high-quality care and to raise greater awareness of health conditions.

Maternity and neonatal care

The DSA’s Tell it Right® webinar is designed for maternity and neonatal professionals, including midwives, sonographers, and health visitors. It provides accurate, up-to-date information about Down’s syndrome, guidance on supporting expectant parents during the screening process, and advice on delivering pre- and postnatal diagnoses.

The session also covers common health issues affecting babies who have Down’s syndrome in their early weeks. It uses case studies to explore screening decisions, parental perspectives, and the life experiences of individuals with Down’s syndrome. The webinar is pre-recorded, allowing participants to watch at their convenience. Inclusive participation is at the heart of all that the Down’s Syndrome Association does.

Inclusivity and coproduction

We provide Listen Include Respect training for organisations to foster inclusivity, co-production services for creating accessible materials, and education-focused sessions covering early development to adulthood. The Listen Include Respect guidelines help organisations understand what they need to do to ensure people with intellectual disabilities are included in their work. Our training is co-produced and delivered with people who have Down’s syndrome to ensure that lived experience is at the forefront of our inclusive participation support.

We reached out to all ICBs across England around the time of the Down Syndrome Act receiving Royal Assent in 2022. A significant proportion engaged and met with representatives of the DSA to talk through their specific needs in relation to our offer of a bespoke advisory and training service for their system. Each ICB had a slightly different ask, reflecting their local populations.

One example of the training we have provided is the Down’s Syndrome Act Stakeholder Event facilitated by South Yorkshire Integrated Care Board, held during Down’s Syndrome Awareness Week 2025. A small group of DSA staff were delighted to present at this in-person event, which culminated more than two years of engagement between the DSA and senior officers at the ICB.

The day started with an update from Stephen Kinnock MP, followed by Julian Hallett, DSA Services Development Manager, outlining DSA’s extensive engagement with Department of Health and Social Care officials, including shaping the needs profile of people with Down’s syndrome. DSA Specialist Advisor Jane Mitchell also held sessions on dual diagnosis of Down’s syndrome and autism, and on well-being and regression. In addition to this, we have developed a comprehensive online resource, providing useful information and signposting for health and care professionals.

DSA Our Voice produced a short video to give advice and signpost key resources to health and social care professionals. The DSA works closely with the Down Syndrome Medical Interest Group UK & Ireland (DSMIG) to co-produce information resources and offer health advice through our helpline service.

Health Innovation West of England is a collaborative covering three ICBS across Bristol, North Somerset, Swindon, Wiltshire, and Gloucestershire. We engaged with them to deliver a series of webinars on health inequalities and addressing the issues of learning disability, ageing, and dementia.

Dementia workbook and Down’s syndrome

In 2025, in conjunction with Dr Karen Dodds, we launched the second edition of our dementia workbook, a unique resource for people caring for adults who have Down’s syndrome. The update revises the original document, building on our increased knowledge of dementia for people who have Down’s syndrome, especially our understanding of how to keep people healthy and try to manage the onset of dementia and other health issues.

The new workbook will help health and social care professionals, as well as family carers, support people who have Down’s syndrome to live their best lives as they move into adulthood, and if they are suspected or diagnosed with dementia, through the course of the disease. The workbook is available to all health and care professionals and parents/carers as a free download. Printed copies are also available, at a subsidised price, to ensure affordability.

Easy read information

Easy read information is a way of presenting content that is accessible and easy to understand for a wide range of people, particularly those with learning disabilities, cognitive impairments, or limited literacy skills. It employs clear and simple language, along with images and a straightforward structure, to help readers grasp the information being presented.

At the Down’s Syndrome Association, we produce and publish Easy Read information on a range of health and social care issues. Our aim is to ensure that people who have Down’s syndrome are able to access accurate and helpful information that will help them manage their own health, and to know how and when to ask for help or guidance.

All our Easy Read material is produced with support from Our Voice, a group of people with Down’s syndrome who are experts by experience. They help us develop and improve our Easy Read communications. Our Voice also undertakes work for other organisations, such as the NHS and researchers, to help them develop inclusive and accessible communications.

Regression in people who have Down’s syndrome

Regression is a term used to describe the loss of previously acquired developmental skills in an individual. This can be in the areas of daily living, language, motor abilities/function, or social interaction. Regression typically occurs in adolescence/young adulthood and can occur over weeks to months or more quickly. This regression has been recognised for many years.

The World Down’s Syndrome Congress in Glasgow in 2018 brought it to the fore. Several speakers presented on the issue at the pre-congress health symposium, confirming similar findings worldwide. The DSA Journal Spring/Summer 2019 highlighted the increasing number of younger adults worldwide presenting with a non-Alzheimer type of mental regression. Following this, we funded Cambridge University to carry out a systematic review of unexplained early regression in adolescents and adults with Down’s syndrome.

In March 2023, the DSA hosted a webinar jointly with the Department of Psychiatry at Cambridge. The work of Dr J.D. Santoro in the USA was presented, with several parents talking about their experiences. This resulted in an increased awareness of regression in young people who have Down’s syndrome. We remain in contact with Dr Santoro and have offered to be involved in his research if he is successful in securing funding.

In the US, regression is referred to as Down’s syndrome regression disorder (DSRD). There is still much to learn about why this regression happens; there may be many factors that come into play, including medical reasons.

We have experienced an increase in calls and emails regarding this subject. In response, we have developed a webpage where we are collating useful information and resources. We are also looking to gather further case studies to inform further work in this area, with our continued collaboration with academic and clinical partners. We provide direct support through our Helpline, as well as an online support group for parents/carers and a closed Facebook group.

NHS Digital Flag

The NHS Reasonable Adjustment Digital Flag project is an initiative instigated by NHS England and focuses on patients who have a learning disability giving consent to have their medical records flagged in the NHS Spine to enable health and care workers to record, share and view details of reasonable adjustments across the NHS, wherever the person is treated. We were part of the advisory group which oversaw pilot sites across England adopting this way of working. National rollout began in April 2024 and is continuing.

Learning from lives and deaths – People with a learning disability and autistic people (LeDeR)

Every ICB has a duty to establish a LeDeR review team and for a locally appointed team to undertake a review of the circumstances leading up to the death of any individual who had a learning disability and who died within their ICB area. Any learning relating to an avoidable or premature death should then be considered, and a local action plan agreed upon.

Each ICB submits information relating to the LeDeR reviews they have undertaken to the National LeDeR programme, which is led by King’s College, London.

The Down’s Syndrome Association has two senior staff who sit on the LeDeR Advisory Board and support an adult with Down’s syndrome to share his lived experience and meetings which consider issues relating to health inequalities and mortality affecting people with a learning disability across England. We are also involved in shaping their annual report.

We know that there are several conditions that, if not screened for and diagnosed early, can lead to preventable deaths. We are committed to ensuring that people who have Down’s syndrome, their parents/carers and professionals working with them are informed, that regular health appointments and screening are offered and utilised, and that people understand what signs to watch out for.

Downs Syndrome Association

The Down’s Syndrome Association supports people who have Down’s syndrome, and their parents and carers, throughout their lives. From before birth into older age, the DSA provides services to everyone.

See Full Bio