Group B Strep Support formed in 1996, with just 3 individuals and one medical adviser. Within a few months, we had a respected medical advisory panel made up of three experts in their fields. Now the charity has an annual turnover of over £100,000. Despite the charity’s growth over the years, we have the same goals of increased awareness and support that we have had from our beginning.
The Charity’s History
February 2000 The British Paediatric Surveillance Unit Study, in conjunction with the Public Health Laboratory Service (PHLS) studied the number of culture-proven GBS infections in UK babies up to 90 days old between 1st February 2000 and 28 February 2001 and the risk factors associated with these infections. They established a minimum rate of GBS infection in UK babies of 0.7 per 1,000. Research is a crucial part of understanding GBS infection, its incidence and how best to prevent it.
June 2001 The PHLS issued Interim Good Practice Recommendations for the prevention of early-onset GBS infection in the UK – the UK’s first national recommendations on this.
February 2003 David Cameron, MP launched a campaign in Parliament following meeting constituents Alison & Craig Richards who lost their son, Owen, through GBS infection. Mr Cameron sought answers from the Department of Health on why the UK does not routinely test for GBS carriage whilst other countries do. He tabled an Early Day Motion which over 200 MPs from all parties signed.
May 2003 A sensitive enriched culture medium (ECM) test for GBS carriage is made available privately in the UK. The standard test (an HVS) available on the NHS only detects up to half of women carrying GBS when the swabs are taken. Sensitive tests are not available as a routine part of NHS antenatal care. GBSS wants sensitive testing offered as part of every woman’s antenatal care as has successfully been implemented in many other countries, including the US.
June 2003 UK research showed that the incidence of early-onset GBS infection is higher than previously thought (estimated to be 3.6 per 1,000 births), lending support to the need for effective prevention strategies.
July 2003 David Cameron held an Adjournment Debate in the Commons where he debated the issues of GBS and testing were debated with Health Minister, Dr Steven Ladyman. MP.
July 2003 The National Screening Committee (NSC) convened a workshop in November 2003 on preventing GBS infection in newborn babies. As a result of this, the NSC’s Antenatal Committee set up a GBS sub-group specifically to keep prevention of early-onset GBS infection under review.
October 2003 The National Institute for Clinical Excellence (NICE) issued “Antenatal Care – Routine care for healthy pregnant women” guidelines stating “pregnant women should be offered evidence based information and support to enable them to make informed decisions regarding their care … addressing women’s choices should be recognised as being integral to the decision making process.” Yet pregnant women are not routinely informed about GBS. NICE don’t recommend testing for GBS, saying, “evidence of its clinical effectiveness and cost effectiveness remains uncertain.” All the evidence clearly demonstrates the clinical effectiveness of testing pregnant women for GBS and offering intravenous antibiotics in labour to higher-risk women: this dramatically reduces GBS infections in newborn babies. The cost effectiveness issue is less clear and a cost benefit analysis is needed.
November 2003 With 15 families, David Cameron met with Health Minister, Dr Stephen Ladyman at the House of Commons, to discuss how the Government can reduce cases of GBS infection in babies.
November 2003 The Royal College of Obstetricians & Gynaecologists (RCOG) issued their first guidelines for GBS prevention in newborn babies. GBSS endorses these risk-based guidelines which, if implemented throughout the UK, would prevent most fatal GBS infections in newborn babies. These guidelines are a key starting point – more GBS infections in newborn babies could be prevented by offering all low-risk women sensitive tests to detect GBS at 35-37 weeks of pregnancy (then offering intravenous antibiotics in labour to those carrying GBS, those who previously have had a baby with GBS disease, and those with other recognised risk factors) than by only using risk factors.
A NSC Workshop held on preventing GBS infection in newborn babies agreed the priority should be to ensure women at increased risk receive consistent advice and appropriate clinical management, and that a project group be established to keep prevention of GBS infection in newborn babies under review.
May 2004 The NSC Research Workshop established the key research priorities for preventing GBS infection in newborns – all experts at the meeting supported a randomised control trial to establish the relative effectiveness of a risk-based versus a test-based prevention strategy; and a cost/benefit modelling project.
November 2004 David Cameron organised a meeting with Health Minister, Dr Stephen Ladyman, where families affected by GBS called on the Minister to introduce national testing. The Minister said that if it is achievable and workable, he will make sure it is made available. He agreed the Royal College of Obstetricians & Gynaecologists’ risk-based guidelines should be implemented nationally and that pregnant women and their health professionals must be educated about GBS.
August 2005 The Health Protection Agency (HPA) issued their BSOP (Bacteriology Standard Operating Procedure) No 58 – Screening swabs for Group B Streptococcal Carriage. These describe how best to take and process swabs from pregnant women in order to obtain optimal detection of GBS carriage, and state the results should be reported urgently. A BSOP is the minimum standard recommended by the HPA for screening swabs for group B streptococcal carriage but it is not the standard method used in the vast majority of NHS hospitals.
September 2005 GBSS organised the UK’s first Group B Strep Awareness Week. Volunteers around the country met midwives and other health professionals, handing over packs containing substantial amounts of information materials on GBS for reading, distribution and display. Almost half of the UK’s maternity were visited and those that were not, received information packs by post. There were lots of fundraising and media appearances, including in The Mirror and This Morning.
October 2005 Pregnancy & birth magazine surveyed 1000 pregnant women & new mothers – 9 out of 10 had never heard of GBS, only 2% had been informed about GBS at an ‘antenatal class’ and 3% ‘by their GP’. Two-thirds of these ‘had no idea how dangerous GBS can be’. 100% said ‘all pregnant women should be automatically told about GBS by their GP or midwife and be offered a free reliable test on the NHS during the last few weeks of pregnancy.”
November 2005 David Cameron & GBSS delivered a petition of 5060 names to 10 Downing Street, asking the Government to ensure sensitive testing for GBS carriage is routinely & freely available for all pregnant women in the UK and that health professionals are fully informed about GBS so they can advise families in their care.
May 2006 The NSC launched an online learning package on GBS prevention, developed by the Women’s Health Specialist Library to raise awareness of GBS amongst health care professionals. Based upon the current UK guidelines published by the Royal College of Obstetricians & Gynaecologists, it covers antenatal; delivery; and postnatal care.
January 2007 The Royal College of Obstetrician’s & Gynaecologists’ Patient Information Leaflet on preventing GBS infection in newborn babies was finalised and made available from their website.
February 2007 The RCOG published the results of their national audit to evaluate practice in UK obstetric units against the recommendations of the RCOG guideline. The Audit showed that, even after 3 years, only a minority of units had protocols which were entirely consistent with the guidelines.
April 2007 Dr Chris Steele (GP on the ‘This Morning’ programme and columnist in several newspapers and magazines) became the Group B Strep Support’s first patron.
September 2007 The results of two research projects commissioned in 2005 by the Health Technology Assessment (HTA) Programme were published:-
- The National Perinatal Epidemiology Unit, St George’s Hospital, the HPA and King’s College undertook an economic modelling study which reported in the BMJ in September 2007 that testing women for Group B Strep during pregnancy could save the Government £37million a year. The article stated that most GBS infection in newborn babies could be prevented by changing current best practice and that offering testing for group B Strep carriage to all pregnant women was the most cost effective option, with antibiotics being offered in labour where GBS is found.
- A proposal for a feasibility study of a large trial comparing testing with risk factor management to support decision making about a future trial was submitted but it was recommended that in its current design the trial should not be commissioned.
December 2007 GBSS organised the UK’s second Group B Strep Awareness Week – all UK maternity units were sent up to date information materials for both health professionals and expectant parents. There were lots of fundraising and media appearances, including in The Mirror and many local and regional newspapers.
January 2008 In conjunction with Pregnancy and birth magazine, GBSS created a petition asking that all women are provided with information about GBS and offered a sensitive test for GBS as a routine part of their antenatal care. Nicholas Soames, together with a number of other MPs from England, Wales and Northern Ireland, took a delegation of parents and supporters to present the petition to the Prime Minister.
February 2008 Jeffrey Donaldson and Alasdair McDonnell jointly hosted an information event to raise awareness of a campaign to save babies lives by making sensitive testing for GBS available to pregnant women on the NHS in Northern Ireland. Professor Philip Steer (chairman of GBSS’ medical advisory panel) and Jane Plumb (chairman of GBSS) addressed an audience of MPs, MLAs, health professionals and families affected by GBS providing information about measures which can be taken which will prevent most of these infections in newborn babies.
March 2008 The review of NICE’s Antenatal Care guideline was published. Disappointingly, there was no review of the GBS sections, despite this being suggested by a variety of clinicians, health professionals’ organisations and GBSS. This guideline is next due for review in March 2011.
April 2008 GBSS met with the Minister of Public Health.
May 2008 GBSS met with the new Screening Programmes Director of the NSC.
November 2008 NSC GBS Stakeholders’ Meeting was held – GBSS submitted comments to the NSC on the meeting note and the Evaluation of antenatal screening for Group B Streptococcal (GBS) carriage against NSC Handbook Criteria, most of which were not included in the final submission to the NSC meeting. GBS infections reported to the HPA increased to 421 GBS infections in babies aged 0-90 days in 2007, an increase of 24% since 2003 (when RCOG’s guidelines were introduced).
March 2009 A petition of 3196 names was submitted to the Prime Minister asking him to ensure all women are offered the chance to be tested for group B Strep during pregnancy. In June, the Government confirmed they will not offer routine screening for GBS to all pregnant women.
November 2009 GBS infections increase in babies in the UK and in adults. The HPA reported 470 GBS infections in babies aged 0-90 days in 2008, an increase of 51% since 2003 (when RCOG’s guidelines were introduced). 3 more babies a week … at a time when national prevention guidelines were being implemented.
January 2010 With David Cameron’s agreement, GBSS met with the Shadow Health Minister.
Spring 2010 On 20 March, a petition of almost 1300 names was submitted to the Prime Minister asking him to ensure all women are offered the chance to be tested for group B Strep during pregnancy. In August, the Government confirmed they would not offer routine sensitive screening for GBS to all pregnant women.
June 2010 The Health Protection Agency held a GBS Symposium in London, bringing together international experts in the subject of current advances in the diagnosis, management and treatment of neonatal group B streptococcal infections. GBSS attended and spoke at the meeting.
November 2010 Incidence of GBS infection in babies in the UK reported in 2009 in England and Wales were published. The incidence has been rising – by over 38% between 2003 (when national guidelines were introduced) and 2009 for early-onset GBS infections. (http://www.hpa.org.uk/hpr/archives/2010/hpr4610.pdf)
December 2010 More research shows a testing strategy is more cost effective than a risk factor strategy. Research suggests that the NHS could actually make significant cost savings by introducing ECM testing for all pregnant women at 35-37 weeks and offering antibiotics in labour accordingly. The research was published in BJOG at http://www.ncbi.nlm.nih.gov/pubmed/21078057, and found that the risk factor approach currently used in the UK costs GBP50,000 per infection prevented, but that this would fall to GBP45,000 if routine screening were introduced (screening is more efficient because it prevents more cases). This is a purely financial advantage, without taking into account the savings from fewer babies needing intensive care, and without considering the distress to parents who lose their baby when this could easily have been prevented.
September 2011 Northern Ireland Assembly Health Committee. Evidence session on Group B Streptococcus – the committee took evidence on GBS from Group B Strep Support and thanked them for attending. Minutes here
November 2011 The incidence of GBS infection in babies rose again to 506 in babies aged 0-90 days in 2010. The number of babies aged 0-6 days suffering these largely preventable infections continues to rise – by over 32% between 2003 (when risk-based prevention guidelines were introduced in the UK) and 2010. We had hoped we’d see a drop but sadly, that’s not happened. Click here to see the report.
December 2011 Northern Ireland Assembly Health Committee. Following up on the meeting in September, the Committee noted correspondence from Group B Strep Support and agreed to write to the Department about the issues raised. The Committee also agreed to hold a further evidence session with departmental officials on Group B Streptococcus.
December 2011 A poll held by ComRes found that while 54% of the women aged between 20-35 surveyed had heard of group B Strep, only 20% knew what it was. 92% of those surveyed believe that information on group B Strep should be given to all pregnant women and would welcome the opportunity for pregnant women to be screened for group B Strep in the later stages of pregnancy and believe this should be offered to women routinely. 95% believe antibiotics should be offered in labour to women with group B Strep and that they themselves would definitely or probably accept the offer (89%)
January 2012 Jane Plumb, joint founder of GBSS was awarded an MBE for services to Child Healthcare in the 2012 New Year Honours’ List in recognition of her work to prevent group B Streptococcal infection in newborn babies.
May 2012 Mark Durkan MP and Mike Hancock MP tabled individual Early Day Motions ((EDMs) are formal motions submitted by MPs for debate in the House of Commons. However, very few are actually debated. EDMs allow MPs to draw attention to an event or cause and they register their support by signing individual motions.)
June 2012 A new report into infant death and disability caused by group B Streptococcus (GBS) infection was launched in the House of Commons. The reception was hosted by Alison Seabeck MP and heard from Professor Philip Steer, Emeritus Professor at Imperial College, consultant obstetrician at the Chelsea and Westminster Hospital & Chair of the GBSS Medical Advisory Panel, Charlotte Cheshire, whose son Adam suffered from GBS infection and Jane Plumb MBE, Chief Executive of GBSS, who prepared the new report.
July 2012 Novartis Vaccines hosted a day-long meeting about developing a vaccine against group B Strep infection. Still in the development phase, a safe and reliable vaccine when available will revolutionise GBS prevention. Gina Burns from the US Group B Strep Association and Chief Executive of GBSS, Jane Plumb MBE chaired a group on GBS Public Awareness, Advocacy.
July 2012 The Royal College of Obstetricians & Gynaecologists updated their guidelines for GBS prevention in newborn babies. Disappointingly, few changes have been made to the first edition (published in 2003), despite a lengthy consultation process to which GBSS and many others contributed. For more information, click here.
August 2012 NICE published their new guideline on the use of antibiotics for the prevention and treatment of early-onset bacterial infection, including those caused by GBS. For more information, click here.
October 2012 The UK National Screening Committee public consultation on routine screening for group B Strep closed. GBSS raised awareness of the consultation and encouraged responses from the public and health professionals.
November 2012 The incidence of GBS infection in babies remained relatively unchanged in 2011 compared with 2010 in England & Wales, though there has been a welcome fall in Northern Ireland*. The reason for this fall is unclear although the effect of the local awareness campaign of 2011 cannot be ruled out. The overall trend in England, Wales & Northern Ireland is of a rising incidence of group B Strep infections in babies, despite national guidelines. The Royal College of Obstetricians & Gynaecologists introduced Green Top Guideline 36 against GBS infection in newborn babies in 2003. Click here to see the reports from 2001 to 2011.
December 2012 The UK National Screening Committee decided to not introduce routine screening for group B Strep. GBSS was very disappointed by the decision, especially the fact that to date the NSC has failed to respond to any of the questions raised in the comments on the public consultation.
Mrs Jane Plumb MBE and members of the Medical Advisory Panel met with Parliamentary Under Secretary of State, Department of Health, Dr Dan Poulter MP and the Chief Medical Officer, Professor Dame Sally Davies and it was agreed that steps would be taken to ensure health professionals will be able to access the ‘gold standard’ ECM (Enriched Culture Medium) tests for group B Strep carriage in NHS laboratories. This means the best tests will be available, improving prevention of these severe infections.
February 2013 The Royal College of Obstetricians & Gynaecologists asks for comments on their draft Patient Information Leaflet on group B Strep. GBSS and many others submit their comments (click here for more information).
July 2013 GBSS against hosted Group B Strep Awareness Month: 31 days of concentrated awareness raising by GBSS and many supporters up and down the country. For a brief summary, click here.
September 2013 Bounty Media research reveals that women want better protection for their babies from group B Strep infection; 97% of the women interviewed think all pregnant women should be routinely offered a reliable test for GBS. The research conducted among approximately 2,000 pregnant women on Bounty’s Word of Mum research panel, showed that 41% of women had not heard of GBS. For more information, click here.
October 2013 We were delighted to receive the FabVorg Friendliness Award for best voluntary organisation – our thanks to lovely volunteer, Margaret Gomme, for nominating us.
November 2013 Nadine Dorries MP held an Adjournment debate on 7 November 2013, with additional questions asked by Andrew Selous and a response from the Parliamentary Under-Secretary of State for Health (Dr Dan Poulter). Click here to watch on YouTube or click here to read the transcript.
November 2013 The incidence of GBS infection in babies remained relatively unchanged in 2012 compared with 2011 in England & Wales. The incidence of early onset GBS infection in England, Wales & Northern Ireland remains the same as it was in 2003, when national guidelines were introduced. Click here to see the reports from 2001 to 2012.
Jan 2014: GBSS was devastated by a last minute Department of Health u-turn in late 2013 on a decision to make an improved group B Strep -specific test available at the request of health professionals. The plan had been for the ‘gold-standard’ test to be available from Jan 1 on request, but in late December 2013, this was reversed. This decision leaves the UK far behind other developed countries.
February 2014: GBSS’ Chief Executive Jane Plumb won the Tesco Campaigning Mum of the Year Award 2014.
February 2014: GBSS welcomed Dr Guduru Gopal Rao OBE, Consultant Microbiologist at The North West London Hospital NHS Trust and Honorary Senior Lecturer working with the Centre for Infection Prevention and Management, Imperial College, to the Group B Strep Support Medical Advisory Panel. This new appointment follows the resignation from our Medical Advisory Panel of Dr Christine McCartney OBE, Director of Microbiology Services to Public Health England (PHE, formerly Health Protection Agency). Christine chose to resign in order to avoid any prospective conflicts of interest as an employee of the newly formed PHE, which includes responsibility for the UK National Screening Committee.
February 2014: The group B Strep e-petition to the Scottish Government created by Jackie Watt whose granddaughter tragically died from GBS infection, closed on 17 February with 1874 online and 178 off-line signatures. It called on the Scottish Government to introduce new guidelines advising that all expectant mothers are given information about Strep B and are either screened for Strep B as a matter of routine or given information on where to go if they wish to be tested privately.
March 2014: A new group B Strep epetition was created by Lindsey Nunn, which will close on 19th February 2015. The petition calls on the Department of Health to ensure that: EVERY woman is routinely given accurate information about group B Streptococcus (group B Strep or GBS) during antenatal care; every low-risk woman is offered a sensitive test for GBS, ideally at 35-37 weeks; and every higher-risk woman is offered antibiotics.
March 2014: GBSS Chief Executive Jane Plumb, along with members of the Medical Advisory Panel, met with the Minister for Health and the Chief Medical Officer to discuss better GBS prevention. Jane also met with the Prime Minister and his wife Samantha, and Home Secretary, Theresa May, at Downing Street.
April 2014: Following the Scottish Parliament Public Petitions Committee’s consideration of the petition at its meeting on 18 March 2014, the Committee wrote to a number of organisations to seek their views, including the American Congress of Obstetricians & Gynaecologists, the Scottish Government and the UK National Screening Committee. Jackie was invited to submit her comments on the responses of these organisations to the Committee.
April 2014: GBSS welcomes Su Newton as a GBSS Volunteer Ambassador. Su has already done so much to help raise awareness and now her role is official. Su will be lending support to many of GBSS’ charity functions, such as fundraising, campaigning, press and public relations and awareness building of GBS.
June 2014: GBSS’ first Calendar Competition came to a close, won by those listed here.
July 2014: GBSS against hosted Group B Strep Awareness Month: 31 days of concentrated awareness-raising by GBSS and many supporters up and down the country. A massive 2.32 million saw tweets mentioning GBSS, and over 320,000 saw the #GBSaware post about baby Imogen, who tragically died from group B Strep infection, the post achieved local, regional and national media coverage. In addition, over 200 people, including celebrities Peter Andre and Dermot O’Leary took part in the #GBSaware selfie campaign. The album is on the charity’s Facebook page.
August 2014: Supporters took up the viral Ice bucket challenge for GBSS, raising over £200. PHE opened a consultation on their SMI B 58 Detection method for Group B Streptococcus carriage, which ran until September.
September 2014: GBSS welcomed Susan Gregory as the charity’s new Chair. She had already devoted considerable time and resources to help create much greater awareness of this preventable infection in babies, following the tragic death of her nephew from group B Strep infection when he was only a few hours old. The charity paid a huge tribute of thanks to Debbie Slater who served as chair for six years and we are delighted that she remains on the Executive Committee.
October 2014: GBSS exhibited at the NCT babblelive! conference and debuted the charity’s new awareness-raising and educational posters. The charity also attended Bumpfest, Mumsnet’s one- day event for ‘everything birth and baby’.
October 2014: GBSS, along with many other baby charities, highlighted Baby Loss Awareness Week. As group B Strep is the most common cause of life-threatening infection in newborn babies, the charity contributed by posting a #GBSaware Fact-A-Day on its social media channels in support.
October 2014: An article published in The Lancet revealed a 60% rise in group B Strep infection in babies in Holland since their introduction of the risk-based prevention method. GBSS commented on the research in its blog, available here and achieved media coverage for its response.
November 2014: GBSS had a stand at the national Royal College of Midwives Conference. Group B Strep awareness materials were in very high demand and the stand had to be restocked multiple times. Many qualified midwives and student midwives were very interested in group B Strep prevention, and many signed up to the charity’s Health Professionals Mailing List.
November 2014: For the first time, GBSS attended the Royal College of Obstetricians and Gynaecologists Annual Professional Development Conference in London. It was an excellent opportunity to engage with so many interested and dedicated health professionals, who took large amounts of group B Strep educational and information materials to share in their hospitals and among staff and mums to be.
November 2014: Mum Ame Edmonds became a Volunteer Ambassador for GBSS. She had and continues to work tirelessly to help raise funds and awareness of group B Strep, sharing her daughter’s group B Strep story with the media and hosting talks
November 2014: GBSS again partnered up with Bounty UK, taking a page in the Bounty You and Your Pregnancy guide given to every pregnant women in the UK around their 12-week booking appointment. In 2015, Bounty will conduct research on awareness and perception of group B Strep among pregnant women and new mums, as well as delivering information to relevant health professionals through their Healthcare Network.
December 2014: The National Institute for Health and Care Excellence (NICE) issued a new quality standard which sets out priorities for healthcare professionals on the use of antibiotics to prevent and treat infections in newborn babies. GBSS’s Chief Executive Jane Plumb MBE took part in the process and stated “Proper assessment of pregnant women and their babies, with antibiotics being given promptly when key risks or signs of infection in newborn babies are present, will mean that antibiotics are used more appropriately. This is good news for pregnant women and their babies.”