Health and Research
16th January 2025
A summary of the presentation given at the International Federation for Spina Bifida and Hydrocephalus’ World Folic Acid Week 2025 WFAAW25 Webinar ‘Prevention of Neural Tube Defects: Leaving No One Behind’
Kate Steele, CEO, Shine
January 2025
In 2021, the UK Government announced its intention to introduce mandatory fortification of non-wholemeal flour with folic acid - a major milestone in public health advocacy. This decision, however, had been a long time in the making. Shine had campaigned alongside others for over 30 years, and it took another three years after the 2021 announcement to receive confirmation in November 2024 that mandatory fortification had officially been written into UK law. Flour millers and manufacturers now have 24 months to implement this change fully.
For those involved in this journey, this victory is more than a policy shift; it is a testament to perseverance. One crucial lesson I’ve learned along the way is the need to be absolutely clear about the changes you are campaigning for. Another key lesson is to never give up, even when things get tough. It’s essential to keep working towards goals that matter.
Beyond fortification: addressing the bigger picture
While mandatory fortification is a significant step forward, it is not a panacea. It addresses part of the problem, but supplementation remains an essential component in preventing neural tube defects (NTDs) such as anencephaly and spina bifida.
Research shows that folic acid supplementation can reduce the chances of NTDs developing during pregnancy by around 70%. Shine’s ‘Folic For Life’ campaign provides a much-needed focus to get our important messages out and help people make informed choices about pregnancy planning.
We know some members of the Shine community can find messaging around prevention uncomfortable, particularly some of our adult members. To address this, we’ve reviewed and updated our communication approach to make our aims and their importance clearer. We now place a greater emphasis on the need for prevention of the fatal condition anencephaly. It is also a NTD, but less well known than spina bifida, despite causing significant numbers of baby losses each year.
Whether and how to prepare for pregnancy is up to each individual to decide. However, we believe everyone has the right to be fully informed when making those choices. Our ‘Folic For Life’ campaign focuses on finding the best avenues to share the right information at the right time.
Key lessons from the ‘Folic for Life’ campaign
Through our work on the ‘Folic for Life’ campaign, we’ve gained invaluable insights and identified challenges that shape our ongoing efforts.
Here are four key lessons I’ve learned along the way:
1. Timing Is Everything
While many people are aware of folic acid’s role in pregnancy, the critical need for preconception preparation is less understood. A common refrain we hear is, “My midwife told me to start taking folic acid at my first pregnancy appointment.” Unfortunately, by that time, it’s often too late. To address this gap, our campaign focuses not just on the importance of folic acid but also on the right time to start taking it.
We’ve also identified inconsistencies in messaging across the NHS. Many women planning pregnancies may not receive accurate information when they need it. Addressing this requires widespread awareness efforts and collaboration with healthcare professionals. I have been greatly encouraged by the recent joint statement issued by the Chiefs of Medicine, Nursing and Midwifery across the four UK nations, which also recommends professionals continue to promote supplementation.
2. Effective engagement and communication
To ensure consistent public messaging, we’re working to engage national strategic bodies and influential professionals. Additionally, we’re advocating for the inclusion of folic acid education in the national curriculum. Educating young people, especially teenage girls and young women, is crucial to fostering early awareness.
3. Collaboration is key
Collaboration was central to our campaign for fortification and remains vital in our prevention efforts. Many of our Shine members - adults and parents of children with spina bifida - are, or have the potential to be, powerful advocates. Their stories resonate deeply and can influence public perception more effectively than statistics alone.
Building relationships with government officials, public health bodies, and other key players has also proven to make a difference. Equally important is understanding and addressing the concerns of those who oppose folic acid supplementation. Preparing counterarguments with solid evidence is essential for overcoming resistance.
4. Planning makes the difference
A clear roadmap is essential for successful campaigning. Knowing the direction you want to take, the stakeholders you need to engage, and the obstacles you may encounter allows for a more focused and effective approach. Planning helps maintain momentum and ensures all efforts are aligned with the ultimate goal.
Looking ahead
The journey towards mandatory folic acid fortification has been long and challenging, but the lessons we’ve learned along the way will continue to guide us. While fortification is a landmark achievement, it’s just one part of the broader aims to prevent neural tube defects and support families affected by these conditions.
By continuing to advocate for preconception health, fostering collaboration, and refining our messaging, we can make even greater strides in the years to come.
Together, we can create a healthier future for all.
Further information
Shine is the largest specialist UK charity that supports people with spina bifida and/or hydrocephalus, supporting over 14,000 people living with spina bifida and/or hydrocephalus, and associated conditions.
For more information about Shine, visit www.shinecharity.org.uk.
For further information on Shine’s ‘Folic for Life’ campaign, visit www.folicforlife.com.
You can also contact Dr Jenny Smith-Wymant, Shine’s Health Research and Information Coordinator and charity lead for ‘Folic for Life’ on jenny.smith-wymant@shinecharity.org.uk.
Become a Shine member
Shine offers free membership to individuals living with spina bifida and/or hydrocephalus, and associated conditions. We support parents and carers, and families and friends of those affected by the conditions. There is free membership for professionals, too.
We also offer tailored, confidential support to anyone who has lost a baby to anencephaly.
Become a member by clicking here.