Group B Strep Support began in 1996 after our founders, Jane and Robert Plumb, lost their newborn son Theo to group B Strep sepsis. Until Theo became ill, they had never heard of group B Strep.
They started GBSS because they wanted other families to have something they hadn’t had: clear, reliable information about group B Strep, and somewhere to turn for support.
Thirty years later, much has changed. Awareness has increased, more families have access to information and support, and important progress has been made. But there is still more to do.
Click the milestones below to explore some of the key moments in our journey so far.
One of GBSS’s first priorities was to create reliable information for families affected by group B Strep, supported by our Medical Advisory Panel (now known as our Clinical Advisory Panel).
By the end of 1996, we were reaching out to healthcare organisations, professional bodies and charities across the UK, letting them know we were here and asking them to signpost families affected by group B Strep to us.
On 20 September 1996, Group B Strep Support was officially registered as a charity.
The charity was tiny.
The ambition wasn’t.
GBSS supported the first enhanced national surveillance study of group B Strep infection in babies across the UK and Ireland.
The study helped provide the clearest picture yet of the burden of GBS disease and the number of babies affected.
In June 2001, the Public Health Laboratory Service published the UK’s first national recommendations for preventing early-onset group B Strep infection.
GBSS wasn’t involved in writing those recommendations, but their publication marked an important milestone. For the first time, preventing group B Strep infection was being addressed at a national level.
GBSS worked with MPs to bring group B Strep to the attention of Parliament. More than 200 MPs backed a Parliamentary motion and group B Strep was debated at Westminster.
David Cameron became an important supporter, helping a small charity navigate Parliament and ensure the voices of affected families were heard by decision-makers.
The same year, the Royal College of Obstetricians and Gynaecologists published its first national guideline specifically on preventing early-onset GBS infection.
Momentum was building. Group B Strep was becoming impossible to ignore.
Below left to right: Craig Richards, Alison Richards, David Cameron MP, Jane Plumb and Robert Plumb.
For the first UK Group B Strep Awareness Week, GBSS supporters and volunteers visited almost half of the country’s maternity units. And information was sent to every other maternity unit across the UK.
It was an enormous undertaking for a small charity, powered by volunteers and families who believed expectant and new parents, and the health professionals caring for them, deserved better information about group B Strep.
Later that year, more than 5,000 people signed a GBSS petition calling for better information and access to sensitive GBS testing. Together with David Cameron MP, we took their voices to Downing Street.
What had begun around one family’s kitchen table was becoming a national campaign.
More than 11,000 people signed a GBSS petition calling for better information about group B Strep and improved access to sensitive testing. The petition was delivered to Downing Street with the support of parliamentarians and campaigners determined to improve outcomes for babies and families.
As public awareness grew, so did support for change. What had started as a small charity driven by personal experience was now bringing thousands of voices together to influence national policy and practice.
More than a decade after GBSS was founded, our campaign had become impossible to ignore.
Below (left to right): Robert Plumb, Jane Plumb, Susan Gregory, Nicholas Soames MP, Dr Chris Steele, Dr Robert Feldman and Theresa May MP.
Our CEO, Jane Plumb, was invited to join the group developing NICE’s national guideline on neonatal infection, helping to bring the experiences and priorities of families affected by group B Strep directly into the guideline development process.
Her contribution reflected far more than one family’s experience. It drew on years of listening to families affected by GBS: what mattered to them, what had gone well, and where information, communication and care could have been better.
GBSS went on to contribute to updates of the guideline and to NICE quality standards, helping ensure that national recommendations reflected not only the clinical evidence, but also the experiences and needs of pregnant women and birthing people, parents and families.
The voices of affected families were helping to shape national standards of care.
GBSS joined researchers and advocates from around the world in Siena, Italy, to discuss the development of maternal vaccines against group B Strep, jointly leading a workshop on public awareness and advocacy.
At the time, a vaccine to help protect babies from GBS disease still seemed many years away.
Today, promising maternal vaccines are in development, and GBSS continues to work to ensure that pregnant women and birthing people, parents and families are at the heart of discussions about their future use.
GBSS was helping ensure that public and patient voices were part of the global conversation from the start.
GBSS held its first major professional conference on group B Strep at the Royal College of Obstetricians and Gynaecologists.
We brought together leading clinicians, researchers and others working to prevent group B Strep infection and improve care for affected families. Together, they shared evidence, challenged thinking and explored how outcomes could be improved.
The conference laid the foundations for what has become an important part of our work: bringing healthcare professionals, researchers and families together to learn from one another and accelerate change.
The GBS community was growing, and so was its ability to drive change.
Below: Dr Gopal Rao OBE speaking at the first major GBSS professional conference on group B Strep.
Updated national guidance from the Royal College of Obstetricians and Gynaecologists recommended that all pregnant women should be given appropriate information about group B Strep.
GBSS contributed to the public consultation on the guideline, and a number of our suggestions were reflected in the final version.
We also worked closely with the RCOG to develop the accompanying patient information, helping ensure it addressed the questions and concerns that matter most to expectant parents.
For a charity founded because two parents had never been told about group B Strep, this was a particularly significant moment.
Information about group B Strep was now part of nationally recommended maternity care.
After years of calling for better evidence about how best to prevent early-onset group B Strep infection, funding was secured for GBS3, a landmark UK trial comparing the current risk-based approach with routine testing for GBS during pregnancy.
GBSS was involved from the application stage, helping bring the perspectives of pregnant women and birthing people, parents and families into the research. We went on to co-lead patient and public involvement throughout the trial.
When barriers threatened hospitals’ ability to take part, we worked with Government, NHS and research leaders to help resolve them and kept GBS3 firmly on the political agenda.
The trial ultimately involved 71 hospitals and around 320,000 women and birthing people and their babies, creating an unprecedented body of evidence with the potential to shape GBS prevention for years to come.
GBS3 became the largest study of its kind in the UK, helping answer questions families and professionals had been asking for decades.
From campaigning for answers to helping generate them.
GBSS wrote an online learning module on group B Strep for the Royal College of Midwives, helping make reliable, practical GBS education available to midwives across the UK.
It built on years of GBSS staff providing training, sharing evidence and supporting maternity professionals in hospitals, at conferences and through professional networks.
Good information for families matters. So does ensuring that the health professionals caring for them have the knowledge and confidence to put that information into practice.
Better outcomes start with informed conversations.
The World Health Organization launched its first global roadmap to defeat meningitis by 2030.
GBSS had been closely involved in its development. Our Chief Executive served on one of its technical taskforces, and we contributed particularly on group B Strep, including what needed to happen to prevent GBS infection while the world waited for safe and effective vaccines.
Working with Meningitis Research Foundation, Meningitis Now and the UK Sepsis Trust, we successfully advocated for changes that strengthened the roadmap.
The experiences and priorities of families affected by GBS were helping shape international policy and action.
National guidance only makes a difference if it is put into practice.
GBSS investigated how NHS maternity services were implementing national recommendations and found worrying variation. This included pregnant women and birthing people not routinely receiving information about group B Strep, and some hospitals using less sensitive methods when testing for GBS carriage.
We took our findings to Government.
Following our representations, then Health Minister Nadine Dorries wrote to NHS Trust chief executives about the use of the recommended ECM test.
Publishing good guidance is only part of the job. Making sure it improves care is just as important.
We wanted the trusted pregnancy information developed with the Royal College of Obstetricians and Gynaecologists to be available to more families, including those whose first language is not English.
GBSS conceived the project and secured funding to translate the information into 14 additional languages. The RCOG helped ensure the translations were reviewed by native-speaking clinicians.
The result was trusted information about group B Strep in pregnancy available in 15 languages, free to anyone who needs it.
Every family deserves access to information they can understand and trust.
GBSS took its professional conference online and made it an annual event, bringing together hundreds of healthcare professionals, researchers and families from the UK and around the world.
Our conferences create a space where new evidence can be shared, difficult questions discussed and the experiences of families heard alongside clinical and scientific expertise.
What began with our first major conference at the Royal College of Obstetricians and Gynaecologists in 2015 had grown into an international GBS community.
The conversations shaping the future of GBS prevention and care were no longer happening in one room, or even one country.
GBSS launched its own free, CPD-accredited eLearning course on group B Strep.
Co-produced with parents and families, midwives, obstetricians, neonatologists and other experts, it provides healthcare professionals with practical, evidence-based education they can apply in their everyday care of pregnant women and birthing people, parents and babies.
More than 1,300 healthcare professionals registered in its first few months.
Almost three decades after we first began sending information to health professionals, GBSS was helping provide accredited education at scale.
Because better care starts with informed, confident professionals.
30 years of Group B Strep Support
The world of group B Strep looks very different today from the one in which GBSS began.
There is national clinical guidance. Information about group B Strep is part of nationally recommended care in pregnancy. Families’ experiences inform NICE guidance and major research. Hundreds of thousands of women and birthing people and their babies have contributed to research into better prevention. Healthcare professionals can access dedicated GBS education. And maternal vaccines that once seemed a distant hope are moving closer.
Throughout all of that work, something much quieter has continued every day.
We’ve answered questions. We’ve listened to worried and frightened parents. We’ve supported families whose babies developed group B Strep infection, including families whose babies died. And we’ve provided information and support, free of charge, to anyone who needs it.
We’ve also taken what families have told us into meetings with healthcare professionals, researchers, policymakers and politicians, so their experiences can help make things better for the families who come after them.
Some of the impact of 30 years of GBSS can be counted: in families supported, healthcare professionals trained, hospitals involved in research and changes to national guidance.
But some of the most important impact can never be counted: the babies who didn’t develop GBS sepsis or GBS meningitis because someone had the right information, recognised a risk or provided the right care at the right time.
That’s what 30 years of informing, supporting, campaigning and working for change has always been about.
And there is still much more to do.
