Down Syndrome UK welcomes national maternity care investigation, calls for focus on inclusive care standards

Leading charity highlights need for comprehensive support for all families, including those receiving a Down syndrome diagnosis

Down Syndrome UK has welcomed the Health Secretary’s announcement of a national investigation into maternity care standards, emphasising the need for inclusive care that recognises and supports the diverse experiences of all families, including those receiving a Down syndrome diagnosis during maternity care.

The charity, which has extensive experience working with maternity units across the UK and has conducted groundbreaking research with Warwick University on maternal mental health support, says the investigation provides an important opportunity to address systemic issues to ensure that maternity care reflects the varied needs of families.

Nicola Enoch, CEO of Down Syndrome UK, said:

“We welcome this investigation as an essential step towards ensuring safe, compassionate maternity care for all families. Our work with maternity units and research with Warwick University has shown that quality care must go beyond clinical outcomes – families need accurate contemporary information, empathetic unbiased communication, and comprehensive emotional support.

Families receiving a Down syndrome diagnosis face unique challenges and deserve evidence-based information delivered with empathy and expertise. Too often, we hear from families who felt unsupported or received outdated information during this crucial time.

This investigation must examine not just clinical outcomes, but the quality of communication, the provision of accurate information, and the emotional support available to all families. We have worked extensively with the Royal College of Midwives to improve the experiences of our families, and we stand ready to share our expertise and research findings to help improve standards across the NHS.”

Findings from University of Warwick report demonstrating need for review
Down syndrome in maternity care: Mothers’ experiences of mental health support

• Only 38.1% of mothers of babies with Down syndrome reported receiving enough mental health support during pregnancy — compared to 85% of women in the general maternity population (CQC, 2023).
• Nearly two-thirds (63.8%) of respondents felt there was not enough support for their mental wellbeing after their baby’s birth.

Examples of unacceptable experiences:

• “When told by a consultant, when in a vulnerable situation, that it’s ‘bad news’, you tend to believe them… until you learn that in fact it’s not bad news at all – it’s your son, and he’s amazing.”
• “I was told the diagnosis and then left to get on with it. No information, no support, no counselling.”
• “The consultant looked at my baby and with a terribly cold, heartless bedside manner, said my baby showed features of Down syndrome… She gave me no information whatsoever and then left me. I was on a full ward for everyone to hear. I had to text my husband the news. That was the only day I cried about Down syndrome.”

Down Syndrome UK brings substantial experience to this area, having developed a national antenatal care pathway in collaboration with the National Down Syndrome Research Foundation and St George’s University Hospital Trusts, working alongside eminent fetal medicine specialist Professor Basky Thilaganathan. The pathway offers guidance for best practice when delivering a diagnosis and supporting families during pregnancy.

In addition, the charity has worked closely with the Royal College of Midwives (RCM) to develop professional learning modules aimed at improving knowledge and confidence in caring for families expecting a baby with Down syndrome. These modules have been well received and highlight the value of lived experience in shaping professional development.

The organisation’s commitment to evidence-based improvement was demonstrated today at the Royal College of Obstetricians and Gynaecologists conference, where their Warwick University research findings on maternity mental health support were presented.

Positive About Down Syndrome – A Unique Source of Support

Through its Positive About Down Syndrome initiative, Down Syndrome UK supports more than 100 expectant women at any given time — a unique, peer-led service not offered by any other UK charity. This work provides insight into the lived experience of families and ensures that support is rooted in reality and informed by the voices of those directly affected.

Advocacy for Better Standards

The charity has consistently campaigned for better training and awareness within maternity services, underpinned by its recent research with the University of Warwick exploring gaps in maternity mental health support. The findings reinforce the need for a more joined-up approach to care that includes psychological wellbeing and follow-up support.

Impact of training and support

DSUK’s maternity training programme has already demonstrated significant impact among healthcare professionals and continues to receive outstanding feedback from student midwives and professionals, who highlight the importance of hearing from families and receiving practical tools for communicating diagnoses.

“Thank you DSUK! I always try to be aware of my language & how I speak to parents & carers, but now I feel more informed about babies with Down syndrome and the best information to give to parents, which resources to point them to and most importantly how I present that information. I think this should be mandatory training, especially with screening HCPs, I sadly hear negative stories all too often.” Community Midwife, May 2025

“This was an excellent session and I feel that it has helped me feel more confident discussing Down syndrome with parents and it was really valuable to hear Lucienne’s lived experience, a huge thank you for sharing that with us. I have always thought positively about Down syndrome but I can confidently say that I think this session will stay with me throughout my whole career. It has been very impactful.” – Student midwife, April 2025

Areas DSUK urges the investigation to address:

• The quality and balance of information provided to families receiving a prenatal or postnatal diagnosis
• The consistency and availability of training on disability awareness for healthcare professionals
• Emotional and psychological support provision for expectant and new parents
• Clear and compassionate follow-up care and support pathways

ENDS

Notes to Editors

About Down Syndrome UK: Down Syndrome UK is the only charity providing extensive ongoing support to expectant and new parents, together with training to health care providers.  The organisation provides information, support and advocacy to improve lives and change perceptions.

Media Contact:

Natasha Aidinyantz
natasha@downsyndromeuk.co.uk
07791448337

Resources:

• Warwick University Research: https://warwick.ac.uk/fac/soc/cidd/research/downsyndromeexperiences/ds_maternity_mh_support_-_warwick_-_final_003.pdf
• Personalised Antenatal Care Research with Professor Basky: https://www.stgeorges.nhs.uk/wp-content/uploads/2021/01/Personalised-antenatal-care-of-pregnancies-suspected-or-diagnosed-with-Down-syndrome.pdf
• Royal College of Midwives iLearn Module: https://www.ilearn.rcm.org.uk/enrol/index.php?id=1367
• Down Syndrome UK’s Sharing the News The maternity experience of parents of a baby with Down syndrome

Key Statistics:

• Approximately 775 babies are born with Down syndrome in the UK each year.
• Down syndrome is the most common genetic cause of learning disability.

Interview Opportunities

Nicola Enoch, CEO, and parents with recent lived experience are available for interview.