Leading for safety: A conversation with Jane Plumb, Founder of Group B Strep Support

Summary

Jane Plumb is the Co-Founder of Group B Strep Support and the Women's Voices Lead for the Royal College of Obstetricians & Gynaecologists. In this interview, she emphasises the importance of actively involving patients and families in patient safety discussions so that improvements can be informed by their insights and experiences. Jane also talks about her campaigning and advocacy work, reflecting on the challenges and achievements to date as well as looking ahead to future aims and activity. 

Questions & Answers

What made you decide to start campaigning and set up Group B Strep Support?

The tragic loss of my middle child, Theo, from a group B Strep infection at just 17 hours old was the driving force behind my decision to start campaigning and set up the charity Group B Strep Support. At the time, my husband and I had never heard of group B Strep, and we were devastated to learn that it is the most common cause of life-threatening infection in newborn babies in the UK and could usually be prevented. We wanted to prevent other families from going through the same heartbreak, so we established Group B Strep Support to raise awareness, support affected families, and push for improvements in the prevention, testing, and treatment of group B Strep.

Why is it important to engage with patients and families around patient safety?

Engaging with patients and families is crucial for ensuring patient safety. Patients and families have unique insights and experiences that can shed light on potential risks and areas for improvement within the healthcare system. By actively involving them in discussions and decisions about patient safety, we can gain a better understanding of their needs, concerns, and perspectives. This collaboration helps to create a patient-centred approach to healthcare and promotes a culture of transparency, trust, and shared responsibility.

Over the years, what have been the main challenges in engaging with key stakeholders and influencing changes for safety?

Engaging with key stakeholders and influencing changes for safety has presented several challenges over the years. One of the main challenges is overcoming entrenched attitudes and resistance to change within the healthcare system. Convincing stakeholders of the need for improvements and demonstrating the value of patient engagement requires consistent effort and evidence-based advocacy. Another challenge is the limited resources available to patient advocacy organisations like Group B Strep Support, which can make it difficult to compete for attention and influence in a crowded healthcare landscape. However, by building strong partnerships, presenting compelling evidence, and persistently advocating for change, we have made progress.

Reflecting on the work of Group B Strep Support, what would you say the most significant milestones or achievements have been?

There have been many significant milestones and achievements for Group B Strep Support over the years. Some of the key accomplishments include:

a) Raising awareness: Group B Strep Support has played a vital role in raising awareness about group B Strep among healthcare professionals, families, and the public. Back in 1996 when we started, there was virtually no awareness of group B Strep – even in 2006, a survey by Pregnancy & Birth magazine found that only 10% of their readers had heard of group B Strep. Thankfully, most expectant and new families have now heard of group B Strep – a survey we did with Bounty in 2019 found that 79% of new and expectant parents had heard of group B Strep - and this increased awareness has led to more informed decision-making and saved many babies’ lives.

b) Advocacy for improved prevention: Group B Strep Support has campaigned for improved prevention protocols for group B Strep infection in babies since day one. As a result, we now have national guidelines from both the National Institute for Health and Care Excellence (NICE) and the Royal College of Obstetricians & Gynaecologists (RCOG), plus guidelines on testing for group B Strep carriage from Public Health England (the predecessor of UKHSA (United Kingdom Health Security Agency). As a result, there has been greater recognition of the importance of testing and increased availability of testing options within the NHS and privately.

Group B Strep Support played a crucial role in the Government funding a large-scale trial, GBS3, to compare different approaches to preventing group B Strep infection in newborn babies. The GBS3 trial is ongoing with results due in 2025. These will inform UK clinical practice, guidelines, and prevention strategies, and should reduce babies developing neonatal death and disability from group B Strep infection. The results will also inform global efforts against group B Strep infection in newborn babies and improve maternal and child health outcomes. 

c) Support for affected families: Group B Strep Support has provided crucial support and information to families affected by group B Strep, ensuring they have access to the information and resources they need during what can be a very difficult time. The charity has a free helpline for anyone with questions or would like support around group B Strep.

d) Guideline development: Group B Strep Support has worked closely with healthcare organisations, including the RCOG and NICE, to develop evidence-based guidelines for the prevention and management of group B Strep infections in babies. We also worked with the WHO on their global Roadmap to Defeat Meningitis by 2023, including group B Strep meningitis. This strategic plan outlines a multi-faceted approach to tackle meningitis, including prevention, early detection, and improved treatment.

What is next for you personally, and for Group B Strep Support?

Personally, I remain committed to advocating for improved prevention, testing, and treatment of group B Strep infection. I will continue to raise awareness, provide support, and push for positive change in the healthcare system. I am delighted to be Women's Voices Lead for the Royal College of Obstetricians & Gynaecologists for 2023-26. I will focus on ensuring the voices of women and other obstetrics and gynaecology service users are right at the heart of the College’s thinking, decision-making, and activities, which will help improve safety and outcomes for all.

For Group B Strep Support, the focus will be on further raising awareness and driving policy changes to ensure that every baby receives the best possible protection against group B Strep infection. 

In the short term, we are focused on improving awareness and education around group B Strep, particularly for doctors and midwives who have not had the support they should have.

In the medium term, we look forward to the GBS3 Trial results in 2025, which will give us the data the UK needs to change policy and practice and stop more of these infections.

And in the longer term, we will continue to support the progress towards a maternal group B Strep vaccine. This has been prioritised by the WHO as part of their Roadmap to Defeat Meningitis by 2030 and is the 'holy grail' for GBS prevention

These next steps for Group B Strep Support involve ongoing advocacy, collaboration with stakeholders, and education programs to improve the health outcomes of families and babies globally. There is still a lot to do. 

Share your insights

Are you a health campaigner with insights to share? What motivated you to start campaigning? How do you hope to make care safer for patients through your activity? What have been the challenges and achievements so far? You can share your insights by commenting below (register for free first) or by contacting us at content@pslhub.org