1. Group B Strep : Parents’ Perspective
HPA: GBS Symposium
Thursday, 17th June 2010
Group B Strep Support
Delighted to be here – important meeting
Here with 2 hats on:
Parent
Joint founder & Chief Exec of GBSS
…. A bit about GBSS …..

2. Group B Strep Support (GBSS)
PREVENT PREVENTABLE GBS INFECTION IN BABIES
Charity set up 1996
Information & education for parents
Support for families affected by GBS
Support research into GBS prevention
Supported by medical advisory panel
Prof Philip Steer (Chair)
Dr Christine McCartney
Dr Alison Bedford Russell
Ms Philippa Cox
3 main aims – overarching objective of preventing preventable GBS infection in babies
Couldn’t do it without our medical advisory panel members
freely give their time & expertise
& who improve and check all our printed materials
…. In terms of what the charity deals with in a year …

3. Group B Strep Support - 2009 500 members 20,000 supporters
2,000 new contacts by /letter/phone
50,000 letters/ s/phone calls
2.5m hits on
Information to all UK hospital maternity units
Snapshot of 2009 – fab so many people use our website:
In addition to this, we send out information UK Mat Units – usually annually
… and the people who contact us by phone/ / letter ….

4. Group B Strep Support
2,000 new contacts by / letter/ phone
About a FIFTH are health professionals – mostly midwives
About a THIRD are people who currently or previously carried GBS
About a THIRD are people who have no GBS history
About one SEVENTH are people who’ve had a baby sick with GBS, most of whom have recovered
…. Over the last year, we’ve done a survey on our website …..

5. GBSS Survey 09/10: 900 people 88% married/living with partner
Average age 32
77% have children
56% 0-3 years
26% 4-6 years
17% 7-11 years
12% 12+
21% pregnant
… 900 people have completed the survey on our website
This slide gives some information about the people who did
If you’d like to be send more detailed results /slides, sign up at the GBSS stand
…. We asked some questions ….

6. GBSS Survey 2009/10
…. This slide summarises the results …. Truncated bar chart …
These are YES answers –
…. These are the questions we asked in our survey
…. The questions we’re asked are

7. Questions Parents: Health Professionals: Both:
Why has nobody mentioned GBS to me?
Why haven’t I been told a GBS test is available?
Health Professionals:
How can I get more information?
When will testing be available on the NHS?
Both:
Why isn’t the ECM test available on the NHS?
Top two questions from parents …. & health professionals …. And always asked the last one ….
good question – and perhaps someone will answer that convincingly today?
It’s certainly not because the Risk Factor prevention strategy mostly used in the UK is working ….

8. Are current prevention strategies working
Are current prevention strategies working? HPA Reported cases of GBS bacteraemia in infants* England & Wales
Culture proven, voluntarily reported cases in E&W -
underestimates true burden
Area in RED are early onset GBS infection so most of these would have been potentially preventable
BUT
Figures since 2003 RCOG guidelines dipped slightly, but now increasing
Clearly it’s not working the way we had hoped … what we at GBSS and parents want …….
Source: Health Protection Agency, *excludes a small number of infants with imprecise age data

9. Prevent GBS infection in newborns
Available now ….
Give Mums & health professionals information
Offer low-risk Mums sensitive testing
Offer intravenous antibiotics in labour to higher risk Mums
Recommend intravenous antibiotics in labour to high risk Mums
When available ….
Effective, safe vaccine against GBS infection
To prevent preventable infections now ….
It’ll be wonderful when a safe effective vaccine is available & we’ll be delighted to help promote it
…. 14 years ago, when we started the charity, we were told a vaccine was 5-10 years away … still hearing that now ….
SO, we need to look after the babies born between now and when it is available …
Because the goal of us all is the same ….

10. What we all want … healthy babies