As the year draws to a close, I would like wish all our supporters a peaceful and relaxing Christmas and great 2016. With your support, we can gratefully say that 2015 and has been a fantastic year. This is some of what we’ve been up to over the last twelve months….
The GBS conference
Tuesday 3 November 2015 saw a national one-day conference for health professionals, “Prevention of Group B Strep infection in neonates: The way forward in the UK.” Top experts spoke and different prevention strategies were discussed. One of the highlights of the conference was Dr Gopal Rao and the team from Northwick Park Hospital sharing their experiences of introducing the first universal screening programme in a UK NHS Trust.
Watch out for the videos of the day – if you’re interested in the medical information about group B Strep, they’re fascinating. We’ll be posting them on the www.gbsconference.co.uk website (and our YouTube channel) in the coming weeks, once we’ve finalised the details, together with transcripts and a summary.
Perhaps one of the most encouraging things we heard on the day was when Professor Alan Cameron, Vice President Clinical Quality for the Royal College of Obstetricians & Gynaecologists (RCOG) and Dr Andrew Thomson, Co-Chair of the Guidelines Committee RCOG said they thought there would be an antenatal screening programme for group B Strep in the UK within the next 5 years.
#GBSSheroes: Fundraisers – Jackie Scott and Lynsey Dalvarez
April is London Marathon month! This year GBSS supporter Jackie Scott successfully completed the 26.2 mile course and raised a fantastic £3,251.
In 2009
my Nephew, Samuel, was born asleep. A post-mortem revealed that Samuel died from Group B Streptococcus. Group B Strep (GBS) is a bacterial infection and is normally harmless if detected, however, it can be passed to new born babies around childbirth and sadly in babies which develop GBS infection, it can be very serious. GBS is not routinely tested for in the UK and therefore results in many unnecessary deaths of newborn babies, my nephew being one of them.
I miss my nephew everyday but when I held him I promised him two things: 1) his memory will live on 2) we will prevent this from happening to anyone else.
my Nephew, Samuel, was born asleep. A post-mortem revealed that Samuel died from Group B Streptococcus. Group B Strep (GBS) is a bacterial infection and is normally harmless if detected, however, it can be passed to new born babies around childbirth and sadly in babies which develop GBS infection, it can be very serious. GBS is not routinely tested for in the UK and therefore results in many unnecessary deaths of newborn babies, my nephew being one of them.Congratulations, Jackie for a brilliant run!
A huge thank you to Lynsey Dalvarez and The Black Boy Golf Society for raising a fantastic £3,000. Lynsey writes
“In November 2014, I gave birth to my first child – a beautiful baby boy called Frankie. Although born healthy Frankie contracted GBS shortly after birth and he deteriorated very quickly. After 4 days of fighting, my partner and I had to make the agonising decision to let him go. I was devastated to find out that I coul
d have been tested for GBS and treated in labour which potentially could have saved my little boy’s life. Once I had found your website and understood what the charity was all about, I knew I had to do something to raise money and ultimately raise awareness of GBS. Therefore I asked my dad, an avid golfer, to nominate GBSS to be a charity of choice for the golf society he plays for. They knew the heartache we had gone through as a family and therefore happily agreed to raise funds. Over the course of a year, six golf days and many other fundraising activities, they raised huge £3,000. I could not be more thankful and so happy that the memory of my boy can do some good.”
Change.org Petition
July saw the launch of our first change.org e-petition, spearheaded by mum Fiona Paddon who, with her partner Scott, had raised over £2,600 by running 10K in memory of their son, Edward Gili, who should have had his first birthday on 27 May. Fiona said,
“Edward was very sadly born with a catastrophic GBS infection and was only with us for nine short but very precious days. So we dedicated 1K to each of those days and the last one to each other… No baby should die due to ignorance of group B Strep.“
Today, there are over 221,500 supporters on the petition – but we need more. If if you haven’t already done so, please sign and share.
Volunteers
We couldn’t run as efficiently as we do without the help of our brilliant volunteers – both those all around the UK, and those who come into our office in Haywards Heath regularly. Margaret and Rose have helped in the office throughout the year, plus there are twenty or so volunteers who are on call to help us with mail-outs, preparing for conferences, transcriptions, etc: anything we ask them really. These volunteers have given us over 300 hours this year! We love our volunteers and, of course, by donating their time, they are saving the charity a considerable amount of money.
Looking forward to 2016
GBSS’s 20th Birthday
2016 will be a milestone year for us as we celebrate our 20th birthday! The good news is we have seen a massive increase in awareness of group B Strep over the last two decades; raising awareness is a vital part of the work we do. But still too often families and their health professionals have insufficient information about group B Strep. We are proud to say that awareness is much better than it was in 1996, but we’re not complacent – there’s still room for improvement.
The 2015 Bounty Survey Of Women revealed that 47% of the 4,673 new and expectant mums who took part had heard of group B Strep. This clearly indicates that there is still a lot more work to be done to raise awareness of GBS. However, when Pregnancy and Birth magazine surveyed women back in 2006, the figure was only 10% so huge progress has been made!
As long as we continue to receive phone calls, letters and e mails from families unaware of what exactly the disease is, we will continue our awareness-raising campaigns for health professionals and the public.
#WhyGuess? campaign
The “Why Guess … when you can test?” campaign wants to stop healthcare professionals having to guess whether a pregnant woman is carrying the potentially harmful group B strep bacteria. It aims to establish the principle that testing for group B strep carriage is better than guessing and that accurate testing allows timely and accurate interventions.
GBSS wants pregnant women and their health professionals to have easy access to GBS-specific testing for group B Strep carriage. The current gold standard test for group B Strep carriage is the ECM (Enriched Culture Medium) test which is described by Public Health England in their UK Standard.
The campaign is supported by 19 other charities and organisations and in 2016 we will be working with those organisations and others to campaign for accurate tests for GBS carriage to be easily available within the NHS for doctors, nurses and midwives to access for pregnant women in their care.
Most group B Strep infections in newborn babies are preventable yet, on average in the UK:
- One newborn baby a day develops group B Strep infection
- One baby a week dies from group B Strep infection
- One baby a fortnight who survives the infection is left with long-term disabilities – physical, mental, or both
Group B Strep is the most common cause of life-threatening infection in newborn babies and the leading cause of meningitis in babies under three months. The rate of group B Strep infection in newborn babies in the UK has gone up over the past 10 years, despite well-implemented risk-based prevention guidelines. The current test used in the UK is poor at detecting GBS, missing up to 50% of carriers – little better than flipping a coin. It’s time to change. More information about the campaign can be found here
UK Group B Strep Guidelines 2016
Two key guidelines governing group B Strep prevention in the UK are due to be reviewed in the near future, probably 2016. These are the guidelines issued by the Royal College of Obstetricians & Gynaecologists (Clinical Green Top Guideline No 36 Prevention of early onset neonatal GBS disease) and the UK National Screening Committee’s policy (Antenatal screening for group B Strep). We at GBSS will be keen to contribute to the updates to these important guidelines, and will encourage others to do the same.
The energy and commitment of our supporters continues to drive us forward. We hope you have a wonderful break and we look forward to catching up with you in the New Year.
Christmas 2015 – helpline open times
