The positive change
inspired by tragedy

After Jane Plumb’s son Theo died at only 17 hours old as a result of Group B Strep infection, she resolved to raise awareness of the then-little known condition, and fight for the necessary change which could save the lives of other babies.

Now, 27 years later, significant progress continues to be made in the approach to Group B Strep within UK healthcare, led and inspired by the work of Group B Strep Support, the charity established by Jane and her husband Robert in 1996.

Here, NR Times learns more about the work of GBSS, the advances to date, and why progress is tinged with frustration at how long urgently-needed change continues to take.

Since the loss of Theo, the middle child of Jane and Robert Plumb, to Group B Strep infection in 1996, what was then a condition with little recognition among the healthcare community - and almost no familiarity among the general public - is now firmly on the radar of both expectant mothers and health professionals alike.

Group B Strep - the most common cause of severe infection in newborn babies, causing sepsis, pneumonia or meningitis - is now well known and its symptoms recognised.

Over 80 per cent of pregnant and new mothers are aware of the condition and national guidance has been introduced.

Recently, Group B Strep in labour was included in the latest Care Competency Framework from NHS England, which sets minimum training standards for all health professionals working in maternity and neonatal care.

And these huge, life-saving advances have come about through the work and unrelenting determination of Group B Strep Support (GBSS), the charity established by Jane and Robert in the hope that other families would be saved from the heartbreak of the loss of a child through better awareness and preventative measures.

GBSS also supports families who have been affected by the devastating infection, with their interventions hailed as “invaluable”.

While the quest for routine testing goes on - although the world-first GBS3 trial will hopefully lead to long-awaited progress - and development of a vaccine continues, the advances made to date have, without doubt, saved the lives of countless babies across the country.

“Looking back, I’m really proud of what we have achieved as a team,” says Jane, who was awarded an MBE for her tireless dedication to the cause.

“Yes, at times it has been very frustrating at how long it has taken for change to be made - at times it has felt glacial - but the progress we have made has been so positive. And I’m excited about what’s coming.

“It feels like we are entering ‘end game’ time. The vaccine will be a game-changer. The GBS3 trial is really important for the UK, but will also have implications for other countries around the world. The Core Competency Framework was an absolutely brilliant step forward.

“There is a lot to be positive about - but we won’t stop, we can’t stop, until we can eradicate Group B Strep infection in babies.”

The lack of awareness that led to action

After the devastation of the loss of Theo, the trauma was compounded further by the shock of being told the reason behind it - Group B Strep infection.

“Just as we were leaving the hospital, the neonatologist ran down the corridor and told us they think Theo died because of Group B Strep infection. We literally had no idea what that was,” recalls Jane.

“Theo was my second pregnancy and I’d bought every book about pregnancy you could buy - this was 1996, when the internet wasn’t yet a ‘thing’ - I got loads of magazines, and there was nothing mentioned at all. It wasn’t mentioned at any of my maternity appointments.

“It was virtually unknown. There was no information publicly available, no guidelines in the UK, nothing.

“My husband and I began to research it, and six weeks on when we went to see the consultant obstetrician, it was clear our information was better than the information he had about Group B Strep at this point.”

As well as finding out more about Group B Strep and its implications, Jane and Robert were horrified to discover the scale of it.

On average, two babies develop Group B Strep infection in the UK every day, one of whom dies every week and one survivor is left with long-term disability.

The realisation that the infection is also largely preventable, through testing of the mother and administering antibiotics in labour, compounded the need for action further still.

“It’s unforgivable, one baby dying from preventable infection, it’s just not acceptable - and, as we know, there are many babies dying rom this,” says Jane.

“Once we realised how preventable the vast majority of Group B Strep infections were in newborn babies, we felt we had to do something to try and stop this from happening to others.”

From here, GBSS was born.

With the support of Dr Robert Feldman, a microbiologist who was working on the development of a vaccine, a medical advisory panel was assembled to support the charity’s quest to make change.

“The overarching objective of everything was to stop this happening to other people. It still is today,” says Jane.

The progress and frustration

Since the creation of GBSS, the impact of the charity, its team and volunteers has undeniably been seismic in terms of Group B Strep awareness.

From being almost unknown in 1996, now it is widely recognised among mothers and healthcare professionals.

The inclusion of Group B Strep in the Care Competency Framework was another significant step forward, showing continued progress - although not always at the pace that is so urgently needed.

“When I look back to 1996, you realise the charity has made a real difference. There has been huge progress, but there is still more to do, clearly,” says Jane.

“Now, there won’t be an obstetrician, doctor, midwife or nurse involved in maternity and neonatal care who isn't aware of Group B Strep.

“We have national guidelines, both from the Royal College of Obstetricians and Gynaecologists and from NICE, that talk about how we can prevent these infections, and also talk about making sure that the pregnant women and people are informed about Group B Strep, which is hugely important.

“The training that will now be delivered as a result of the Care Competency Framework is absolutely huge. Group B Strep is on the map in a way now, in 2023, that we could never have even dreamed of back in 1996.”

But while the progress has been undoubtedly positive and significant, the fact it has taken, in some cases, 27 years is clearly a source of frustration.

“There are some mixed feelings at times,” says Jane. “We will have a breakthrough, like the Core Competency Framework or the RCOG guidelines in 2017 which recommended all pregnant women should be provided with a leaflet about Group B Strep, and the first response is ‘fantastic’ - but that’s followed by ‘what took you so long?’

“Group B Strep should've been a key part of training for all maternity and neonatal healthcare professionals for years, for decades. It shouldn't be news for 2023. But nevertheless, it’s hugely positive.”

The issue of routine testing for expectant mothers has still not been resolved, despite almost three decades of calls for action and evidence from around the world of its efficacy.

While it has given rise to the GBS3 clinical trial - currently ongoing, and due to report back in 2025 - which is investigating the potential for routine testing of all pregnant women and involves 71 hospitals across England and Wales, the wait has been lengthy. Have things moved quickly enough on this vital matter?

“No, of course they haven’t,” says Jane.

“In 1996, the US introduced the first national policy on Group B Strep, was a dual approach which basically said obstetricians could choose whether they offered risk-based antibiotics in labour based on risk factors, or antibiotics in labour based on testing. They established the risk of early-onset GBS infection was significantly lower among the babies of women who were tested, than among those in the risk-based group.

“We saw other countries adopting na-tional screening antenatally for Group B Strep, much of Europe, America, Can-ada, Singapore, Hong Kong, to name a few - and we hoped, we thought, it wouldn’t take that long for the UK to do it too.

“We didn’t think it would take thislong, and it has been hugely frustrating. Things have moved forward massively, and there are kids who are fit and healthy who wouldn’t have been if everyone involved in the charity hadn’t pushed for change.

“But there are still too many babies developing Group B Strep infections that could, and should, have been prevented. And that’s unforgivable.”

A positive outlookWhile change has taken a long time, the pace could well be picking up now, with a number of positive developments happening simultaneously.

In addition to the Care Competency Framework, and the GBS3 trial now funded and underway, the decades-long efforts into the creation of a Group B Strep vaccine are also advancing.

“Work on a vaccine is progressing and it’s incredibly exciting,” says Jane.

“I was first told about a vaccine in 1996 and that it was ten to 15 years away, and there have been variations of ten to 15 years since then. But actually, there has been huge progress in about the last five years, which has been incredibly positive.

“For example, the World Health Organization now has a roadmap to defeat meningitis by 2030, and GBS is one of the four key pathogens that it's addressing, and the only way we're going to be able to defeat Group B Strep meningitis, is with a vaccine.

“Giving antibiotics in labour is only ever an interim measure, and it can make a big change, but it won't change thingsas much as a vaccine.

“So it's very exciting that we have the roadmap and pharmaceutical companies are working really hard on developing a vaccine. I can't wait.

“A vaccine will be able to prevent Group B strep infections that IV antibiotics in labour can't. IV antibiotics in labour can only prevent the early onset Group B Strep infections, those that develop in the first week of life.

A maternal vaccine would be given in middle to late pregnancy, exactly when is not clear because we don't have it yet, but this could prevent stillbirths caused by Group B Strep.

It could prevent the early onset infections, but also the late onset Group B Strep infections, which in the UK make up about a third of cases.

“The potential for this around the world is absolutely huge, it will reach places where testing and IV antibiotics frankly aren’t feasible. This vaccine will make a world of difference.”

While the vaccine would truly be the game-changing breakthrough, the positives come every day for GBSS - giving their support and information to those families who need it; hearing about the positive impact of their work; inspiring others into action.

Over the past 27 years, the little wins have often felt just as significant as the major breakthroughs. Jane says:

“Every time a health professional has been educated about Group B Strep, and has passed on the information to families. Every time things have moved forward, even just a bit. It has all been so valuable and every bit has been progress.

“I’m deeply proud of what together we have all achieved.

"Yes, I’d have liked it to have been quicker, but we have come such a long way and I’m really excited about what’s coming.”

July marks GBSS Awareness Month - for more details about how you can lend your support to the campaign, or support the charity, visit gbss.org.uk.

Emma Doughty, head of medical negligence at Slater & Gordon law firm, said: “Jane Plumb and the charity Group B Strep Support have worked tirelessly over the years to
minimise avoidable harm from GBSS and to support those affected by it.

“The promise of a vaccine for GBSS is a huge leap forward in ensuring the safety of babies and mothers.

“Getting to this point and raising awareness has been the life’s work of Jane Plumb, the charity and all of their
supporters.

“We at Slater & Gordon are proud to support Jane and team in their work.

“The progress they have made since 1996 has been frankly astounding and as a result, for so many families, the future now looks brighter.”

Contact Slater and Gordon on 0330 995 6823 or online.