Autumn Winter Newsletter 2020

GBSS

Autumn/Winter 2020

News

INSIDE In Memory of Baby August 3 Inspirational Stories 4 Strep B Awareness Month 5 Corporate Supporters 10

Image: Lily

#StrepBaware

Welcome

The GBSS Team

As we head towards Christmas, I’m struck by what a year it’s been! Not the one any of us expected or had planned.

Despite the challenging circumstances, the charity has achieved a lot this year, providing information and support to those who need us, raising group B Strep with Ministers, and continuing to push for change – and recruiting a new Chair plus 6 new trustees (read more about them on our website).

Thanks to your generous support, we’ve kept the charity running smoothly.

2021 will be an exciting year for group B Strep, with the GBS3 trial of routine testing planned to kick off fully in the Spring, a special event planned for July’s Strep B Awareness Month, and a global GBS conference in London in November.

Do stay in touch – we’re here for you. Wishing you a peaceful and happy Christmas and New Year.

Jane Plumb MBE Chief Executive

Jane Plumb MBE, Chief Executive & Founder Jane Grout, Fundraising & Office Manager Oliver Plumb, Policy and Public Affairs Manager Emily Robertson, Accounts Assistant Hiddy Denizer, Trusts & Philanthropy Manager Roz Moseling, Office Administrator

Front cover image: baby Lily.

Lily contracted late-onset group B Strep meningitis.

Her father Andy told us, “Lily is now at home and is back to her cheeky, hungry, gorgeous little self and we are so grateful to all the Doctors and Nurses for keeping our little girl with us.”

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 newborn at 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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Clockwise from top left:

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.

Parents Louisa Harris and Liam Weekes told us about their heartache over losing baby August.

Mum Louisa writes, “I had a perfectly healthy pregnancy but at no point was told about group B Strep.

I went into hospital at 41+1 with painful contractions. I was sent home and returned later in the afternoon. Due to COVID, my partner couldn’t come in with me. I told the hospital my waters had broken when I came in, but this was dismissed. After checks they left me to rest. An hour later August’s heartbeat had stopped. I had to phone my partner to come into the hospital to break the news. I waited 12 hours before giving birth vaginally.

check when I learnt I had GBS on the 7th June (the day August died). The post-mortem confirmed a month later that this was the reason she died.”

I later found out the breaking waters was in fact a leak. She died within an hour.

Find out more about Louisa and Liam’s fundraising at justgiving.com/fundraising/ allaboutaugust.

I had no idea of GBS until I had my six week

Our thanks to Louisa and Liam who have raised almost £12,000 for the charity, plus massive awareness of group B Strep by speaking with the media, and through Liam‘s very moving song ‘About Her‘ in memory of August. Louisa’s links with company Cult Beauty have additionally raised over £6,000 for the charity via their sample sale.

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Epic coast to coast bike ride David and Nat took on an epic 170 mile coast to coast cycle route known as ‘The Way of the Roses‘.

Starting from Morecambe, they finished their ride in Bridlington in just 3 days.

David’s daughter Sally and her husband Danny lost their newborn daughter Elsie to group B Strep infection. “Elsie was only with us for a very

Amy’s Steps challenge Amy took on the challenge of doing 5,000 kettlebell swings during the month of June to raise money for us. Amy told us, “When I was in labour with my daughter, I was given a test without being told what for.

Three days after she was born, we were at home and I received a call from my community midwife to ask if I‘d been given any antibiotics whilst in labour. I had tested positive for GBS and was told to look out for the signs of infection.

Thankfully she was fine, but it was a terrifying time for all of us, especially as first-time parents, and I want something done to prevent this from happening to other families.”

Amy has raised £150 for GBSS. 4

short time, however during that time we loved her dearly and she made our family complete,” said Sally. They cycled in her memory and

raised vital funds for GBSS. “We don’t want any other families to have to suffer like we have.”

Shawna ran a half marathon Shawna’s son Harry developed group B Strep infection at just 17 days old.

Shawna told us, “Harry has small brain damage on the left-hand side of his brain, and we were told he wouldn’t move his right arm or leg and would be blind in one eye and deaf in one ear.

He’s now 18 months and can move both arms, both legs and he’s not blind or deaf.

He’s a little behind his peers, however, I’m forever grateful we have him here.”

Shawna ran a half marathon with friends and family, and together they raised more than £3,000 for our work.

Strep B Awareness Month Roundup We are pleased to share with you some of the successes you helped us achieve during July’s Strep B Awareness Month: News Media mentions

Thank you

Thanks to families bravely sharing their stories, group B Strep was mentioned in the news during July six times more than in June.

Social Media & Video Content

Our new Strep B awareness videos were watched by 25,000 people – reaching new and expectant parents with key information about Strep B, testing and signs of infection to stay alert for.

Your support in sharing our content led to a huge increase in social media engagement and activity: our Twitter engagement tripled compared with usual, Facebook quadrupled, and Instagram quintupled.

To watch, search Group B Strep Support on YouTube.

Grayson’s 31 Day challenge Grayson’s mum Beth told us, “We walked/ran a grand total of 60.9k (37.3 Miles) and raised £125.

I decided to fundraise for GBSS as although I couldn’t reverse or change the damage it has caused to Grayson, I could raise awareness and help to prevent other families going through everything Grayson has.

The fundraising was a real challenge for us both, and although Grayson thrives on being outside, he found it very difficult at times. But the sense of achievement proves anything is possible. I feel like I’ve accomplished something for such a wonderful cause. Anyone thinking of fundraising should absolutely take on the challenge.”

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Baby Emily’s story Louise told us that when Sophia’s twin sister Emily (pictured on right) contracted group B Strep infection, she felt overwhelmed with guilt, “My heart sank. All I wanted was for both my girls to be

together and to be able to go home. Emily was in the Intensive Care Unit for two further days whilst Sophia and I were up in the ward.

Luckily, our little Emily was a fighter. After a long, worrying

Proud to partner Group B Strep Support Our lawyers have been successfully securing settlements for clients and campaigning for access to justice and patient safety for over 30 years.

If your child has been affected by Group B Strep through medical negligence, please contact Emmalene Bushnell on: ebushnell@leighday.co.uk +44 (0)20 7650 1200 leighday.co.uk @LeighDay_Law

two weeks of tests, lumbar punctures and antibiotics, Emily made a full recovery, and we were all discharged and made our way home as a family of four.”

Healthcare Safety Investigation Branch National Learning Report A national report from a safety watchdog HSIB found failures to follow national guidelines on group B Strep. These led to babies suffering from avoidable group B Strep infection.

Key findings were that mothers weren’t always provided with information on group B Strep, and group B Strep test results weren’t always communicated or noted clearly in records.

The charity is working to help the NHS address these issues.

NHS Resolution Learning Code NHS Resolution (the body that handles clinical negligence claims in England) has, following our request, introduced a new group B Strep code for its claims system so it can better track injuries suffered by babies as a result of these infections.

This new code will help the NHS better understand the true burden of GBS clinical negligence claims – both how many there are and their financial cost.

“Group B Strep: to test or not to test” Webinar & Q&A with Prof Philip Steer & Jane Plumb MBE In July we held an online webinar “Group B Strep: to test or not to test”, with Prof Philip Steer, Chair of GBSS’s Medical Advisory Panel and Jane Plumb MBE, our Chief Executive.

Health professionals and families joined to find out more about group B Strep, treatment and testing. An insightful Q&A session followed. Watch this space for more future webinars.

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Baby Jacob’s story Laura learnt of group B Strep after watching Iwan Thomas on ITV‘s This Morning talking about his son’s GBS infection. Laura told us, “When I found out I was pregnant, your social media posts reminded me that I needed to get a test. I tested positive.”

Laura received antibiotics in labour but gave birth 30 minutes later. Jacob was monitored closely for the first 24 hours of life. She was told to look for signs of GBS infection.

“I can’t believe nobody has heard of this infection. I will continue to spread the word as long as I’m living.”

Baby Summer’s story Amy told us her daughter Summer is a rainbow baby.

Big sister Millie was sadly stillborn at 40+4 days.

Although her pregnancy with Summer was higher risk, Amy was not told about group B Strep.

Summer contracted GBS infection at birth, doctors told Amy to say goodbye to her baby. “I felt like my whole life had been taken from under my feet once again.”

Your donation can make a difference.

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

“Summer recently celebrated her 3rd birthday, and I can happily say she is a very healthy little girl. I think the work you do is amazing. I encourage absolutely every pregnant person I know to get this test.”

Baby Ciarán’s story Sarah told us Ciarán was born at 34 weeks by planned C-section. He had to be resuscitated and was taken to the Neonatal Intensive Care Unit (NICU).

After a week in NICU and a week at home, “Ciarán fed a lot but didn’t seem to put weight on. He wasn’t waking much for a feed and he felt really cold.

Ciarán had developed group B Strep sepsis and meningitis.

His body was shutting down. They started him on two weeks of IV antibiotics.

He also needed a lumbar puncture and more tests.

I will always remember the doctor saying, “If you hadn’t brought him in when you did it would have been a whole different story.”

Baby Reigyn’s story Kelsey told us about the birth of twin girls Reigyn and Ryleigh, “I had a rough pregnancy and was induced at 34 weeks. As I’d had group B Strep in previous pregnancies I was given IV antibiotics in labour. They were taken to the Neonatal Intensive Care Unit (NICU) straight away.

At 20 days old our bigger twin, Reigyn, who had been healthy up until then, developed late-onset GBS meningitis. We had been told for over a week we could take her home, but we refused as we didn’t want to separate them.”

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

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

Reigyn has recovered, but has been left with 30% damage to the left side of her brain, as a result of the GBS meningitis and seizures.

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Corporate support Hayley and Scott Bradshaw have supported GBSS since 2006.

Hayley told us, “We‘d never heard of GBS before, so it was extremely worrying and stressful. Our oldest received treatment and after 2 weeks we were clear and allowed home.” Hayley had antibiotics in labour with her daughter in 2008 and younger son in 2011.

“We‘ve been supporting GBSS and fundraising through our company, Progression Accountancy and helping with the accounting. Anything to support families affected by GBS.”

Be in great company Whether it’s through Charity of the Year partnerships, pro bono support or Payroll giving, supporting GBSS’s work through corporate giving is a great way to raise funds and awareness of our work. We are always keen to work with companies in a way that makes the best use of their resources and staff, offering employees the opportunity for community involvement.

If your company could support our work, get in contact with Hiddy by emailing him at: Hiddy.Denizer@gbss.org.uk. He will be happy to discuss the various ways we can partner together.

Thank you to Cult Beauty Cult Beauty have raised over £6,000 with a sample sale!

“Everyone at Cult Beauty was so proud to be able to contribute to this important cause. Most group B Strep infections in newborn babies are easily preventable, no-one should have to suffer the consequences of this lack of testing.

The solution is inexpensive, but the results of universal testing are immeasurable and literally life-changing.”

Alexia Inge, co-founder Cult Beauty 10

Baby Evie’s story Nicola told us, “Christmas Day arrived.

I felt so low. Wearing a Christmas jumper, holding a teddy, I felt inadequate; what a first Christmas.

My relatives came for visits and I was wracked with guilt for ruining their Christmas.

Evie was on oxygen and had another feeding tube.

I wanted it to stop. The Christmas music. The merriment. The happiness.

However, we were lucky.

Her group B Strep infection hadn’t spread. Evie came off her tubes and by 9pm on Christmas Day, she was

moved to Special Baby Care.

She became stronger, her infection lessened, and all our dreams came true on the 30th December when we brought our little girl home.”

The GBS3 trial

The iGBS3 trial

Due to the pandemic, the GBS3 trial of group B Strep testing will not start allocating hospitals to the testing or the risk-based arms until the Spring. Recruiting pregnant women will start shortly after that.

Alongside the GBS3 trial is the iGBS3 trial, which is working to establish what level of antibody needs to be created in a baby to protect them against GBS infection.

This major £2.8 million trial will determine what prevention approach - testing or riskbased - is better at reducing group B Strep infection in babies. The results, due in 2022/3 will provide evidence for a review of the UK’s national policy.

This will help accelerate the development of a GBS vaccine, which would prevent many more infections in babies and potentially adults than any other prevention strategy.

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Fundraising fun from home Virtual events are a great way to challenge yourself and raise money, all from the comfort of your own home.

Whether you’re getting creative in the kitchen, hosting virtual hang-outs with friends and family online or getting fit with workouts at home, we’ve got lots of ideas for how you can raise funds to help save babies’ lives.

For more information on how to get involved please contact fundraising@gbss.org.uk.

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