Spring/Summer 2021 Printed Newsletter

GBSS

Spring/Summer 2021

News at

25 Y ear

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INSIDE

UK Hospitals report 3 Steps against Strep 4 GBS Virtual Conference 7 Meet our Trustees 10

Image: Ted www.gbss.org.uk

#GBSaware

Welcome

The GBSS Team

It’s been an interesting six months since our last newsletter, and I couldn’t be more proud of our team. We’ve worked incredibly hard to ensure that the information and support we offer families, doctors and midwives have continued seamlessly, despite the pandemic.

I’m particularly excited that the GBS3 trial of GBS screening is resuming. We’re working closely with Health Minister Nadine Dorries and NHS England to get more and more hospitals to take part. Results from the GBS3 trial will shape how the UK prevents GBS infection in newborn babies the future, hopefully leading to offering pregnant women tests routinely.

Our scientific conference on 2 June will bring together world-leading speakers on GBS to share their expertise. I’ll be glued to my screen, and I hope you can join us.

Looking to the summer, July brings Group B Strep Awareness Month 2021. It’s a time to increase awareness of group B Strep, and help families protect their babies.

Together, let’s make group B Strep history.

From top left to right: Jane Plumb MBE, Chief Executive & Founder Jane Grout, Fundraising & Office Manager Oliver Plumb, Policy and Public Affairs Manager Hiddy Denizer, Trusts & Philanthropy Manager Roz Moseling, Office Administrator Emily Robertson, Accounts Assistant Marta Crabbia, Supporter Care Administrator

Front cover image: baby Ted. Jessica didn’t get much information about group B Strep when pregnant with Ted, so “mistakenly thought this meant I didn’t need to get tested” because she was having an elective c-section.

Ted fell ill with group B Strep infection shortly after birth, but made a full recovery.

Jane Plumb MBE Chief Executive

WHAT IS GROUP B STREP?

GROUP B STREP SUPPORT

Group B Strep (Strep B or GBS) is a common bacterium carried in the lower intestines and/or vagina of one in four women. Usually harmless with no symptoms to the carrier, if passed to a baby around birth, it can cause serious infection.

We are the only UK charity dedicated to eradicating group B Strep infections in babies.

Although most babies exposed to GBS do not develop infection, GBS is the leading cause of life-threatening infections in newborns.

Most GBS infections are early-onset (first 6 days), a third are late-onset (7-90 days). Most early-onset GBS infections can be prevented by women carrying the bacteria having IV antibiotics in labour.

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We provide up-to-date evidence based information on GBS to families and health professionals and support to affected families.

We want every pregnant woman to be given information on group B Strep during routine antenatal care and offered the opportunity to have a GBS-specific test late in pregnancy.

Ultimately, GBSS wants GBS infection in babies to become a thing of the past.

UK hospitals failing to follow guidelines on group B Strep In February 2021, we published a report which showed that failures to follow national guidelines to prevent group B Strep infections in newborn babies is leading to a postcode lottery of care and opportunities to stop deadly infections being missed.

Nearly 90% of hospitals in the UK are not using the recommended test for GBS carriage – which costs the NHS around £11- despite clear guidance issued by the Royal College of Obstetricians and Gynaecologists (RCOG) and Public Health England (PHE) that the test is more reliable and accurate.

We’ve approached the NHS in England, Wales, Scotland and Northern Ireland as well as their governments and offered to work with them to improve this situation. We’ll continue to fight to make sure pregnant women in the UK don’t have to put up with a postcode lottery of care.

Key issues found by our report were: • Around 20% of Trusts had not updated their local guidelines since the RCOG guidance was published in 2017.

• Over half (51%) of Trusts did not give all pregnant women information on GBS, against RCOG guidance.

• Two-thirds (66%) of Trusts are using the wrong swab test to try and detect GBS in a pregnant woman, and only 13% of Trusts are following the right laboratory methodology for processing the tests.

Read this news story and the full report here: gbss.org.uk/FOIreport

Health Minister backs Group B Strep Support’s work Health Minister Nadine Dorries has continued to support our work, raising awareness of group B Strep, and pushing for better prevention.

She’s called on NHS Trusts to take part in the hugely important GBS3 trial, and so far this year has written pieces for Grazia and

the Daily Mail highlighting how vital it is that pregnant women and expectant parents know about group B Strep.

We welcome the Minister’s focus on group B Strep, and are continuing to work closely with her and her team to ensure it remains top of the agenda.

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Steps against Strep This March, 80 participants took on our first ever Facebook challenge and clocked up the miles by walking, running and jogging the distance of 62 miles.

We are pleased to announce that a fantastic total of £19,312.75 has been raised to date.

Congratulations to everyone who took part and to your friends and family who supported you through this challenge.

Here are just some of the supporters who shared their stories with us.

Ruaridh showed signs of group B Strep infection after he was born. He stayed in hospital for 5 days of treatment.

When his mum Chloe saw the 62 miles in March challenge on Facebook,Ruaridh said he wanted to do it ‘to save other babies’ lives’ - so thoughtful, especially at 6 years of age.

Ruaridh’s first walk was climbing up Stac Pollaidh. His longest walk was 10 miles, with no complaints. Ruaridh raised over £2,300.

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Rachel was excited to find the 62 miles in March Facebook challenge – Paisley was turning 2 in April 2021 and with COVID restrictions in place, she couldn’t think of a better way to celebrate her birthday than to take part in this Facebook fundraiser.

Rachel told us “I’m pleased I have managed to get my family and friends talking and raising vital funds. Paisley and I look forward fundraising again in the future.”

Time you did something amazing?

Many of the usual fundraising events we rely on to fund our services have been cancelled, meaning your support is absolutely vital. There are so many ways you can support our work - you can set up your own fundraiser today and take on one of our challenges with your friends and family: • Bake and sell to your neighbours and friends • Ask for donations to GBSS instead of birthday presents For the more physically demanding challenges, you could even • Take part in our next Facebook challenge • Run the Royal Parks Half Marathon on the 10th October 2021 Visit gbss.org.uk/events, choose your challenge, and set up a fundraising page.

Call us on 0330 120 0795 or e-mail fundraising@gbss.org.uk to get started with your fundraising, and tag us on Facebook, Instagram and Twitter so we can cheer you along the way.

Debbie raises £657 for her birthday in memory of Ada “Our daughter Ada died from ascending GBS infection while I was in labour with her in August 2019. I decided to set up a birthday fundraiser due to the fact I couldn‘t host a party with my friends and family this year due to covid. I hoped friends would consider donating the cost of a couple of drinks they might have bought me to a charity close to my heart.

It was the easiest money I‘ve ever raised, and I was delighted to be able to give back just a little to Group B Strep Support.”

© Remember My baby

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Baby Cole‘s story Cole’s mum Carrie writes, “I found out that I carried group B Strep after suffering a bleed. I was given a sticker to put on my folder, and informed that in labour, I would have to have IV antibiotics.

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I felt shocked and ashamed.

I thought GBS was a sexually transmitted infection.

how dangerous it could be for newborn babies, how did I not know this?

However, I read the GBSS website and joined the Facebook group, making sure no one could see I had joined! I was shocked reading

If I had not had the bleed, I would never have been tested. My heart goes out to all parents that never received a test.”

Virtual conference Group B Strep in Pregnancy & Babies Our virtual one-day conference Group B Strep in Pregnancy & Babies is on Wednesday, 2 June 2021. It’s a must-attend event for anyone interested in group B Strep.

The conference brings together worldleading experts to talk about group B Strep prevention policies, different testing options, antibiotic usage, and the progress towards a GBS vaccine.

The morning and afternoon sessions will be chaired by Edward Morris, President of the Royal College of Obstetricians

GBS3 Trial This important £2.8 million trial will establish which prevention strategy is best for the UK at reducing group B Strep infection in newborn babies.

After a lengthy pause due to the pandemic, the GBS3 trial is now underway, and has randomised the first four hospitals. 40 hospitals will be allocated to standard care (as described by the Royal College of Obstetricians & Gynaecologists), 20 to ECM testing at 35-37 weeks of pregnancy, and 20 using a rapid test in labour.

As we go to press, one hospital has been randomised to ECM testing (Northwick

and Gynaecologists (RCOG) and Kathryn Gutteridge, President of the Royal College of Midwives (RCM), featuring experts from Public Health England, the UK National Screening Committee, the World Health Organisation, Pfizer and the GBS3 Trial.

Plus our very own CEO, Jane Plumb, and the Chair of our Medical Advisory Panel, Prof Philip Steer.

It’s going to be a fabulous day! View the full programme and book your place at https:// gbss.org.uk/professional-resources/ conference-2021/

Park) and three to standard care (Coventry & Warwick, Nottingham and Royal Devon & Exeter).

The GBS3 team is working closely with many hospitals to get them GBS3 ready and monthly randomisations are scheduled, but they’re still looking for more sites and invite ‘Expressions of Interest’ from hospitals via a site-selection survey.

Visit gbss.org.uk/GBS3 for the latest information and how to get your hospital involved.

GBS3 Trial results, expected in 2023, will provide evidence for the next review of the UK’s national policy on screening pregnant women for GBS carriage.

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Baby Chesten’s story Chesten’s mum Sophia writes, “I tested positive for group B Strep in my second pregnancy. Chesten was my fourth.

After a night of contractions my waters broke at 9.30 am. I begged for antibiotics because I was scared. I was finally given them 1 hour before the birth. He came out grunting and was pale.

Chesten had contracted GBS pneumonia. I sat by his incubator every day staring at him, grieving over my sick child, helplessly miles away from home and my 3 older children. Chesten uses inhalers, but he’s thriving.”

Baby Henry’s story Henry’s mum Rebecca writes, “I went to hospital after developing a temperature and other worrying symptoms.

My baby’s heart rate was dangerously low and I was taken for an emergency Csection. I was separated from my baby, placed in isolation, pumped full of drugs and wired up to various machines.

Your donation can make a difference.

To help us support families like Chesten‘s and Henry‘s, please donate at: gbss.org.uk/donate 8

Test results confirmed group B Strep sepsis which had affected my kidneys. Henry received antibiotics as a precaution, but he too was lucky. At no point during my pregnancy did anyone talk to me about group B Strep.”

Baby Minnie’s story Minnie’s mum Anna writes, “I woke up at midnight when my waters had broken.

After 17 hours the hospital said my baby was face presentation.

My body was constantly shaking and I felt freezing cold. I later found out I had contracted sepsis.

I was then taken for an emergency C-section. My daughter Minnie was born at 4.04 am and rushed to intensive care.

We spent nine days in hospital together. She had the highest infection marker they had ever seen on a newborn in the hospital.”

Baby Isabelle & Sammy’s story Mum Gill writes, “This is Isabelle. She contracted late-onset group B Strep meningitis at 23 days old and was hospitalised for 2 months.

Here she is now. 18 months old and thriving! GBSS have been an incredible support to me and my family for the last few years since Isabelle’s older brother Sammy was also diagnosed with lateonset GBS meningitis in February 2017.

Willing to share your family‘s experience of GBS? Your story matters.

Please email us at: info@gbss.org.uk

I would encourage anyone who is pregnant or considering expanding their family to visit the GBSS website and familiarise themselves with the symptoms of GBS infection and how to test.”

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Meet our GBSS Trustees Our Board of Trustees is responsible for the overall control and strategic direction of the charity. Selected for their expertise, the trustees generously give their time to support the charity voluntarily, making sure we’re doing all we can to prevent group B Strep infection in babies and support the families of those affected.

Dr Edward Morris – Chair Consultant in Obstetrics & Gynaecology at the Norfolk and Norwich University Hospital NHS Foundation Trust and Honorary Senior Lecturer at the Medical School, University of East Anglia. He is President of the Royal College of Obstetricians and Gynaecologists (RCOG).

“We want to stop group B Strep infection in babies to end the tragic impact it can have.

I want to make the UK one of the best places in terms of prevention and management of GBS infection. We are united by one vision, and that united approach gives us strength as a new Board.”

Dr Edward Morris, Chair

Dan Hobster – Treasurer Chartered Financial Analyst and Fund Manager at one of London’s oldest hedge funds managing $400mn in Global Equities.

Alison Eddy Medical negligence lawyer at Irwin Mitchell, specialising in acting for children who have suffered lifelong severe disability due to birth injury.

Dr Balissa Greene Chartered Occupational Psychologist working across the private, public and NHS sectors.

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Dawn Abbotts Fellow of the Chartered Insurance Institute and a Fellow of the Pensions Management Institute.

Diane Jones Chief Nurse, practising midwife and Director of Quality at North West London Collaboration of Clinical Commissioning Groups.

Emily Cook Managing director at Lexington. Former newspaper journalist now working with national and international health clients, providing strategic communications advice and delivering award-winning campaigns.

Dr Kathryn Gutteridge President of the Royal College of Midwives (RCM) and Consultant Midwife.

She has a long history of clinical care and advocacy for women in the NHS.

Stuart Bramley Medical negligence solicitor taking on claims from patients and their families, after 15 years defending medical claims for the NHS.

Robert Plumb Management consultant at KPMG and a Principal, UK Partner and European Partner at Mercer. Clients include Britain’s largest companies, charities and public sector bodies.

Jane Plumb MBE – Chief Executive Joint Co-founder with husband Robert in 1996 after their middle child died from GBS infection. Vice Chair of the RCOG’s Women’s Network.

To find out more about our Board of Trustees and their expertise visit our page: gbss.org.uk/about/who-we-are/about-our-trustees/

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July is Group B Strep Awareness Month #GBSAM2021

Get ready for Group B Strep Awareness Month at gbss.org.uk/AwarenessMonth If you’d prefer not to receive our newsletters, please email info@gbss.org.uk, call 0330 120 0795 or write to us at GBSS PO Box 203, Haywards Heath, West Sussex, RH16 1GF Registered charity number: 1112065

Registered company number: 5587535