We had to say our goodbyes on Christmas Eve
Transcription
We had to say our goodbyes on Christmas Eve
GBSS news Published June 2013 “We had to say our goodbyes on Christmas Eve” Contents: Riley’s Story 1 Key Facts 2 Forward3 News4 Baby Stories 9 Donations12 Why Fundraise? 14 Fundraising News 15 Baby Congratulations 25 Research Papers 26 Raffle & GBSS Shop 27 How you can help – campaign with us 28 Group B Strep Support PO Box 203, Haywards Heath, West Sussex RH16 1GF Tel /answer phone: 01444 416176 Fax: 0870 803 0024 (calls charged at national rates) E-mail: info@gbss.org.uk Website: www.gbss.org.uk GBSS News is edited & published from the above address. Registered Charity No: 1112065 Company Reg No: 5587535 Registered Charity 1112065 | Registered Company 5587535 Jade Jones’ son, Riley, developed group B Strep meningitis at 3 weeks old and now suffers from cerebral palsy. Riley, born at just 26 weeks’ gestation on 1st December 2011 in Newcastle, spent three weeks on the intensive care unit and was doing well. His Mum and Dad were so pleased at how he was doing, bearing in mind he had arrived so early – he was only on a ventilator for one day and then moved to the high dependency unit. However, just a couple of hours later, he became agitated and was unable to feed. Then he became lethargic. Jade says, “On the day he was moved to the high dependency unit, he became unwell. He was crying and grizzly, but the nurse on duty didn’t think too much of it. It just so happened that the nurse who had looked after him in intensive care popped by to see how he was doing and was concerned that Riley’s symptoms were so out of the ordinary for him. She called the doctor immediately. And at that moment, Riley crashed and stopped breathing. The doctor immediately administered antibiotics, the right ones for group B Strep, and he began to respond. Two days later, the result came back positive for GBS infection. Riley was a very sick boy – GBS nearly took our son’s life – we had to say our goodbyes on Christmas Eve.” Thankfully, Riley has recovered from his GBS infection but it has left an unwanted legacy, “He is a happy, lovely little boy,” says Jade, “but he has little muscle movement – he is unable to sit up and can do little else with his body apart from roll over. He also developed chronic lung disease because he was on a ventilator for so long, he developed pneumonia, sepsis and meningitis. We are now under the guidance of ten consultants to help us look after Riley and his needs. “We had never heard of GBS until the doctors gave us the result of his tests. It is vital that expectant Mums know about this infection and to realise how deadly it can be.” Jade is now expecting her second baby and wanted to be tested for GBS* this time around. However, the ‘gold standard’ test is not available from her local NHS trust and she was quoted £300 by a nearby private hospital. *Since Riley had GBS infection, Jade should automatically be offered intravenous antibiotics in any future labours, regardless of any test result. The ‘gold standard’ enriched culture medium (ECM) tests are only available currently at a handful of NHS trusts, but they are easily accessible privately for around £35 (see www.gbss.org.uk/test for availability). 2 Group B Strep – key facts Group B Streptococcus (GBS or Strep B) is a common bacterium. It’s present in the intestines of up to 30% of adults, who carry it without any symptoms and without it causing any harm. In women, it can also be in the vagina. Carrying GBS is normal and doesn’t need treatment. It’s important pregnant women know about GBS because it can cause serious infections (such as septicaemia, pneumonia and meningitis) in vulnerable newborn babies up to age 3 months. However, most GBS infections in newborn babies are preventable by giving Mums whose babies are at raised risk of GBS infection antibiotics (usually penicillin) through a vein from the start of labour and at 4 hourly intervals until delivery. This will prevent most GBS infections in newborn babies by ensuring the baby has plenty of antibiotics on board when born. A newborn baby is at raised risk of developing GBS infection when: • Mum has previously had a baby who had GBS infection • GBS has been found in a urine sample, or vaginal or rectal swab taken from Mum during the current pregnancy • Mum has a fever in labour • Labour starts or waters break before 37 completed weeks of pregnancy • The waters are broken for more than 18 hours before the baby is born Oral antibiotics during pregnancy are given when GBS is found in the urine (to clear the urine infection) and then in labour Mum should be offered intravenous antibiotics. Oral antibiotics are not recommended when GBS has just been found on a vaginal or rectal swab as they are not effective at clearing GBS from the intestines or vagina and have not been shown to prevent GBS infection in babies. Unlike many other developed countries, testing for GBS is not routinely offered in the UK and many NHS hospitals do not have access to the sensitive ‘gold standard’ tests for GBS carriage (ECM or Enriched Culture Medium tests). ECM tests are currently only available from a few NHS trusts although we anticipate their becoming more widely available during 2013. They are available privately with home-testing packs available from £35. NHS trusts and private laboratories and clinics offering ECM tests are listed at www.gbss.org.uk/test What does GBSS want to happen in the UK? In summary, we want: • every pregnant woman to be given information on group B Strep as a routine part of her antenatal care; • every pregnant woman whose baby is at low-risk of developing GBS infection to be offered a sensitive test for GBS carriage at 35-37 weeks of pregnancy (and, where these tests are not freely available from the hospital, all pregnant women should be told that they are available privately – see www.gbss.org.uk/test) • every pregnant woman whose baby is at higher-risk of developing GBS infection (those where GBS has been found during the current pregnancy, those who have previously had a baby with GBS disease, and those where one or more recognised risk factors are present) to be offered intravenous antibiotics from the start of labour until delivery and, for those women whose babies are at highest risk, for these antibiotics to be recommended to them. We believe the above is the best approach for preventing GBS infection in newborn babies in the UK. It is both clinically and cost effective—and much more so than the current ‘best practice’ of risk-based screening, as a number of recent articles* have emphasised. • One day, a vaccine against GBS infection may be available to be given to women before or during pregnancy. This could prevent yet more cases of GBS infection, including late-onset GBS infection and adult GBS infection and must be an urgent research priority. • Until a safe and reliable GBS vaccine is available, we should implement strategies that would prevent most of the preventable cases of GBS infection … not just sit back and wait until better prevention is available. * Preventative strategies for group B streptococcal and other bacterial infection in early infancy: cost effectiveness and value of information analyses. BMJ 2007 Sep 29;335(7621):655. Colbourn TE, Asseburg C, Bojke L, Philips Z, Welton NJ, Claxton Ades AE, Gilbert RE. Cost-effectiveness of rapid tests and other existing strategies for screening and management of early-onset group B streptococcus during labour. BJOG. 2010 Dec;117(13):1616-27. Kaambwa B, Bryan S, Gray J, Milner P, Daniels J, Khan KS, Roberts TE. Dr Chris Steele MBE, GBSS patron says: “Group B Strep infections in newborn babies can be devastating but can usually be prevented – get informed and protect your baby. I’d like to see every pregnant woman in the UK offered a reliable test for GBS on the NHS – this test is a routine part of antenatal care in many countries including France, Canada, Spain, Argentina and the USA. I’d urge any pregnant woman to get informed about GBS, and get tested.” Preventing life-threatening GBS infection in newborn babies www.gbss.org.uk tel: 01444 416176 Registered charity number: 1112065 | Registered company number: 5587535 3 Forward By Jane Plumb MBE, chief executive of Group B Strep Support Last year was an incredibly busy year for the charity; we and so many of our wonderful supporters worked tirelessly to convince the powers that be of the case for the provision of information and sensitive testing for group B Streptococcus as a routine part of antenatal care in the UK. At the same time, the ongoing work continued – we sent out information materials to expectant and new parents and their health professionals. We attended and spoke at conferences and study days. We answered questions about group B Strep by phone, email, letter and on social media. Visits to our website rose by a staggering 50% and hits were up by 166%. Our members and supporters were also spurred on to generate greater awareness and together we raised the profile of group B Strep in the published media, on TV, radio and online, as well as in parliament. Sadly, we continued to hear from and offer information and support to families who had suffered as a result of GBS. As one mother said, “I can’t explain the pain. It’s not something that I could ever imagine feeling ever again. I don’t know anything that compares.” Life-threatening group B Strep infections in newborn babies can usually be prevented – a simple, safe and inexpensive test towards the end of pregnancy can establish whether Mum is carrying the bacteria, allowing antibiotics to be given during labour to minimise the risk of GBS infection in her newborn baby. During 2012, there was a flurry of activity with UK guidelines relating to group B Strep. The UK National Screening Committee looked at the evidence and decided against introducing routine screening for pregnant women for group B Strep at the end of last year. This decision was devastating. The number of GBS infections continues to rise in the UK, falling in other countries where routine screening has been introduced. How is that not compelling evidence? We may have lost the battle, but we have not lost the war as we strive to increase awareness and pressure decision makers for change. The year ended on an encouraging note – at a meeting with the Minister for Health, Dr Dan Poulter, and the Chief Medical Officer, Prof Dame Sally Davies, they said that steps would be taken to ensure NHS hospitals will be able to access the ‘gold standard’ ECM (Enriched Culture Medium) tests for group B Strep carriage. We are delighted by this and look forward to it becoming a reality during 2013. And finally I would like to say thank you to everyone who does so much to prevent as many of these devastating infections in newborn babies as possible. Not everyone is named in this newsletter (though quite a few are!), but so many go to enormous lengths to raise awareness, raise funds and improve the prevention of these infections in the UK. Thank you to every one of you – you never cease to amaze and inspire us. Medical Advisory Panel And an enormous thank you to all of the members of the charity’s Medical Advisory Panel – we thank them for their seemingly indefatigable (thankfully) generosity with their time, knowledge and expertise and for their continued support. Thank you all so very much. Prof Philip Steer BSc MD FRCOG (Chairman) Emeritus professor at Imperial College and consultant obstetrician at the Chelsea and Westminster Hospital in London Dr Christine McCartney OBE, FRCPath Senior Adviser on Microbiology Services to CEO, Public Health England, London Dr Alison Bedford-Russell MRCP Clinical Director for Neonatology at Birmingham Women’s NHS Foundation Trust and West Midlands Strategic Clinical Network Clinical Director for Maternity & Newborn, Birmingham Philippa Cox Consultant Midwife/ Supervisor of Midwives, CWSH Management Office, Homerton University Hospital NHS Foundation Trust, London GBSS Our Executive Committee A huge thank you to each of the members of our Executive Committee, who go above and beyond the call of duty in so many ways. Members of the Executive Committee, with their particular areas of responsibility or interest, are: Debbie Slater Chair (and Fundraising) Ginny ClaytonMidwife Jane Plumb Chief Executive Susie Gregory Dawn Abbotts Treasurer Robert Plumb Secretary Policy Anne HughesGeneral 4 Screening will save newborn lives report launched in Summer 2012 GBSS commissioned a report which makes the simple case that the current approach of only treating women identified through ‘risk factors’ is ineffective. The report, “Screening will save newborn lives: A case for the introduction of routine screening for group B streptococcus in late pregnancy,” was launched at a reception hosted by Alison Seabeck MP at The House of Commons. The event was attended by parliamentarians from both the House of Commons and the House of Lords and the speakers were Alison Seabeck MP, Professor Philip Steer, Emeritus Professor at Imperial College, consultant obstetrician at The Chelsea and Westminster Hospital and Chair of the Group B Strep Support Medical Advisory Panel, Jane Plumb MBE, chief executive of GBSS and Charlotte Cheshire, who spoke so movingly about how group B Strep has affected her son, Adam. that are done are not designed to detect GBS and give a high level of falsely negative results, meaning women think they are free from GBS when they are not. Tests are available for GBS which pose no risk to mother or baby, but they are currently only available privately. They should be offered on the NHS.” Professor Philip Steer, Emeritus Professor at Imperial College said, “Group B Strep infection is the commonest infection complicating labour and the newborn period, and the evidence is now compelling that in the UK the problem is increasing, affecting up to as many as 1,000 babies (and their families) per year. For too many, the complication is fatal. This is despite reductions of four fifths or more in the rate of infections due to GBS in many other developed countries, where routine screening of mothers at 35-37 weeks’ gestation has been introduced.” GBSS believes that the Government should act now to ensure women get the very best advice and support during their pregnancy. This should include information on the serious nature of group B Strep infection, the offer of sensitive testing, followed by appropriate antibiotics during labour to protect the baby from infection. “The evidence from around the world demonstrates that the most effective way to prevent avoidable pain and suffering caused by group B Strep infection would be a national information and testing programme,” says Jane Plumb. GBSS Patron, Dr Chris Steele MBE, attended the event and said, “At present there is no national testing for group B Strep in pregnancy. The tests Meeting your MP Su Newton and her MP, Sir Bob Russell In September 2012, supporter Su Newton met with her MP, Sir Bob Russell, at the House of Commons. She shared with him her story (see page 10). Sir Bob seemed particularly touched by how ill her daughter, Emily, had been and how – had Su been tested for group B Strep late in her pregnancy – her illness could have been prevented. Sir Bob agreed to sign the EDMs tabled by his colleagues at Westminster and to ask questions in the House on this important subject. This he has done and continues to do – and the answers received are helping to inform the GBSS campaign for better prevention of these devastating infections in newborn babies. Su said about the meeting: “I was really pleased that my MP was prepared to meet with me and to hear first-hand the effects that group B Strep infection can have on babies and their families. He was very supportive – I would encourage others to contact their MPs and inform them of the lack of testing offered by the NHS. Fortunately, Sir Bob, having heard Emily’s experience and after reading literature provided by Group B Strep Support, was armed with the reason to sign the Early Day Motions and ask questions in Parliament. I consider this a huge success in terms of raising awareness and would urge others to do the same.” 5 Health Protection Agency UK Standard for Microbiology Investigations – Testing for Group B Strep Carriage be treated with caution. However, the impact of the local awareness campaign of 2011 cannot be ruled out. In August 2012, the Standards Unit of the Health Protection Agency’s Microbiology Services Division issued an update to their UK Standards for Microbiology Investigations (SMI), Processing Swabs for Group B Streptococcal Carriage.* The document has been updated for clarity and is presented in a new format, although there are no major changes to the guidance. The overall trend in England, Wales & Northern Ireland is of a rising incidence of group B Strep infections in babies, despite the introduction of national guidelines in 2003. The Royal College of Obstetricians & Gynaecologists introduced their Green Top Guideline 36 against GBS infection in newborn babies in 2003. The number of cases reported in England, Wales & Northern Ireland for 2004, the following year, and for 2011 is shown below: This SMI describes the processing of specimens from pregnant women for carriage of group B Streptococci and provides a standardised method for culture where clinicians decide to investigate specific patients. As the SMI states, “according to local protocols, patients judged clinically to be at high risk for the development of Group B streptococcal infection may be investigated for carriage. The isolation rate of GBS from clinical specimens depends on several factors. Studies have shown that the accuracy of prenatal screening cultures for identification of GBS colonisation can be enhanced by attention to the timing of cultures, the sites swabbed and the microbiological method used for culture of organisms. Collection of swabs between 35 and 37 weeks’ gestation is recommended to improve the sensitivity and specificity of detection of colonisation at the time of delivery*. Optimum yield will be achieved by selective/enrichment procedures applied to swabs obtained from the vagina and the anorectum which increases the likelihood of GBS isolation by up to 30% compared with vaginal or cervical culture alone. Vaginal and rectal swabs are likely to isolate a diverse array of normal flora and use of selective enrichment broth is recommended to avoid overgrowth of other organisms.” It remains astonishing to us at GBSS that so few NHS hospitals make this test available either to pregnant women in their care or at the request of their health professionals. * Health Protection Agency. (2012). Processing Swabs for Group B Streptococcal Carriage. UK Standards for Microbiology Investigations. B 58 Issue 2.2. www.hpa.org.uk/webc/ HPAwebFile/HPAweb_C/1317132860736 Little change in reported incidence of preventable group B Strep infections in England, Wales & Northern Ireland combined The voluntarily reported incidence of GBS infection in live-born 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 and, due to small sample sizes, the numbers for Northern Ireland need to Group B Strep Infections in babies reported to the Health Protection Agency (Early Onset 0-6 days, Late Onset 7-90 days) for England, Wales and Northern Ireland 2004-2011 Source: GBS infections in babies aged 0-90 days are reported on a voluntary basis to the Health Protection Agency and reported each November. Data are not collected for stillborn babies. Reports from 2001 to 2011 available from the HPA at www.hpa.org.uk/web/ HPAweb&Page&HPAwebAutoListDate/Page/1202487097746 Disappointingly, reported early-onset GBS infections in England, Wales and Northern Ireland combined increased between 2004 and 2011 by over 35%, with the rate per 1,000 live births increasing by almost 20%. The early-onset GBS infections are often preventable by identifying situations where a baby is at raised risk and offering the mother intravenous antibiotics in labour to minimise that risk. At present, late-onset GBS infections are not preventable - early recognition of signs and symptoms consistent with late onset GBS infection and early treatment is vital – although researchers around the world are working on a vaccine which one day may prevent early, late and adult GBS infection. Antibiotics for the Prevention and Treatment of Neonatal Infection New National Institute for Health and Care Excellence (NICE) Guideline Published in August 2012, this new National Institute for Health and Care Excellence (NICE) guideline focuses on the use of antibiotics for the prevention and treatment of early-onset (within 72 hours of birth) bacterial infection in newborn babies, including those caused by GBS. The new guideline makes a number of recommendations, including: • A framework based on risk factors and clinical indicators should be used to identify and treat babies with an increased likelihood of having an early-onset neonatal infection. • Intrapartum antibiotic prophylaxis should be offered in a timely manner to women whose babies are at higher risk of infection (including all pregnant women from whom GBS is found during their current pregnancy). • Babies with suspected early-onset neonatal infection should receive antibiotics as quickly as possible (within one hour of the decision to treat). • Benzylpenicillin and gentamicin should be used in combination as the firstchoice antibiotic regimen for treating suspected early onset neonatal infection. • When starting antibiotic treatment in babies with risk factors for infection or clinical indicators of possible infection, a blood culture should be performed before administering the first dose. Mark Turner, Senior Lecturer and Consultant in Neonatology, University of Liverpool and Liverpool Women’s NHS Foundation Trust and chair of the guideline development group said: “I was very pleased to be involved in the development of these important new guidelines which set out clear recommendations for those treating and managing neonatal infection. The NHS needs to prioritise treatment for sick babies as well as ensure antibiotics are used sensibly.” Farrah Pradhan, parent member of the guideline development group said: “As a parent of two children that were both born prematurely, I know first-hand what a difficult and trying time this can be, especially if a baby also has a bacterial infection. I welcome these guidelines, and I hope they will help healthcare professionals deliver excellent care to pregnant women and their newborn babies.” Jane Plumb said: “These guidelines which will help ensure that antibiotics are used wisely for both the prevention and the treatment of bacterial infections in newborn babies. By giving clear guidance on which antibiotics to use before and after birth and also on situations where antibiotics are not indicated, they will help clinicians use the most appropriate antibiotics wisely and well. And that can only be a good thing. ” More information about the guideline, including implementation tools, can be found as follows: www.guidance.nice.org.uk/CG149 – the guideline itself www.guidance.nice.org.uk/CG149/SlideSet – Educational slide set www.guidance.nice.org.uk/CG149/BaselineAssessment/xls/English – baseline assessment tool www.guidance.nice.org.uk/CG149/CostingTemplate/xls/English – costing tool www.guidance.nice.org.uk/CG149/CostingReport/pdf/English – costing report www.guidance.nice.org.uk/CG149/ElectronicAudit/xls/English – electronic audit tool 6 Royal College of Obstetricians & Gynaecologists In July 2012, the Royal College of Obstetricians & Gynaecologists released their updated Greentop guideline on the prevention of early-onset group B Streptococcal disease (No 36). Disappointingly, few changes have been made to the first edition (published in 2003), despite a lengthy consultation process to which GBSS and others contributed. The statement that routine bacteriological screening of all pregnant women for antenatal GBS carriage is not recommended remains unchanged (this is a Grade D recommendation, using Level 4 evidence – expert opinion). Given the wealth of evidence from other countries which screen and have seen their incidence fall dramatically (while the UK’s incidence is rising), which RCOG chooses to believe might be inappropriate to extrapolate to the UK, this is very disappointing. There are some minor improvements to the updated guideline, particularly in giving more clarity (for example, the guidelines now use the term ‘offer’ rather than ‘consider’ giving antibiotics in labour for women found to carry GBS during the current pregnancy) and including guidance on vaginal cleansing which had not been there before. On the other hand, the guideline recommends against antenatal testing for group B Strep carriage, continues to treat unknown GBS carriage status the same as negative GBS carriage status (which will be untrue for up to 30% of women), has removed a recommendation for prolonged rupture of membranes (a recognised risk factor for GBS infection in newborn babies) and fails to mention the difference between the tests for GBS carriage currently available in the UK. As worrying are statements of facts which don’t bear scrutiny – for example, the statement “the incidence of EOGBS disease in the absence of systematic screening… is similar to that seen in the USA after universal screening and intra-partum antibiotic prophylaxis” is false. In 2011 in the USA, the incidence of EOGBS infection was 0.26 cases per 1,000 live births (ABCs Report: Group B Streptococcus, 2011 www. cdc.gov/abcs/reports-findings/survreports/gbs11.html); in 2011 in England, Wales and Northern Ireland, the incidence voluntarily reported to the Health Protection Agency for early-onset GBS infection was 0.38 per 1,000 live births, 46% higher than the incidence in the US (HPA. Pyogenic and non-pyogenic streptococcal bacteraemia, England, Wales and Northern Ireland: 2011. Health Protection Report [serial online] 2012; 6(46): Bacteraemia www.hpa.org.uk/webc/HPAwebFile/ HPAweb_C/1317136996075). Whilst there are some improvements to the 2012 update, they are tweaks and clarifications rather than fundamental change in guidance. This is very disappointing. We at GBSS remain convinced that the best way to prevent more EOGBS infection is by informing all pregnant women about group B Strep and offering them a sensitive test late in pregnancy, with intravenous antibiotics offered in labour to women whose babies are at higher risk. The evidence from countries which offer screening shows significant falls in EOGBS infection – the UK incidence since the introduction of the RCOG’s risk based prevention guideline in 2003 has risen. The graph below shows data from England and Wales only, with the blue section representing early-onset GBS infection. We had hoped that the RCOG would look at the evidence and realise that their risk-based strategy isn’t working and that it’s time to change. Unfortunately they didn’t. Hong Kong introduces Universal Prenatal Screening for Group B Strep With effect from January 2012, the Hong Kong Hospital Authority (HA) and the Department of Health (DH) have jointly launched a screening programme for Group B Streptococcus (GBS) for pregnant women. the prevalence of EOGBS disease. Overseas experience has shown that the incidence of EOGBS drops dramatically with the introduction of universal swab-based prevention strategy.” The Director of Health says, You can read the full announcement at www.pco.gov.hk/tc_chi/home/files/ Letter_to_private_hospital_and_ doctors_GBS_Rev.pdf. “GBS is the commonest cause of severe early onset infection in newborn infants with a high rate of morbidity and mortality. Of GBS meningitis, about 50% can have neurodevelopmental impairment. Colonisation of GBS in the maternal gastrointestinal and/or genital tracts is strongly associated with early neonatal infection. In Hong Kong, the incidence of early onset GBS (EOGBS) infection in newborn is around 1.0 per 1000 births. Intrapartum antibiotic administration effectively decreases We at GBSS are delighted that women in Hong Kong have been added to the growing list of developed countries which offer antenatal screening for GBS with those who are found to be positive given antibiotics in labour intravenously. Other countries which we understand offer sensitive tests for GBS to women during pregnancy include: Australia, Argentina, Belgium, Canada, Chile, Czech Republic, France, Germany, Italy, Japan, Kenya, Lithuania, Oman, Poland, Spain, Slovenia, Switzerland and the USA. The UK National Screening Committee rules against universal screening for group B Strep in pregnancy In October 2012, the UK National Screening Committee completed a public consultation on the issue of routine screening for group B Strep. GBSS raised awareness of the consultation via the media and e-petition and encouraged responses from the public, health professionals and others. In December, the decision was announced against antenatal screening for group B strep. Needless to say GBSS was very, very disappointed with this decision especially given the evidence of its effectiveness in other countries and the support of so many for screening. Over 200 individuals, health professionals, MPs, charities and medical bodies contributed to the consultation and more than 90% of the comments submitted were in favour of screening – so far, the NSC has failed to respond to any of the points raised during the public consultation process. The document for public consultation can be viewed on their website at www.screening.nhs.uk/groupbstreptococcus, as can the comments made during the public consultation. GBSS’s chief executive, Jane Plumb, MBE commented, “The decision not to recommend for routine screening for group B Strep is devastating. I am at a loss as to why the UK National Screening Committee has refused to see that the current situation in the UK is unacceptable and that the introduction of routine screening is the best way forward.” You can read GBSS’s more details response to the update at www.gbss.org.uk/RCOG2012. The situation will be reviewed again in 2015/16 “or earlier if significant new evidence emerges”. 7 Measures of awareness Measures of awareness include website visits, media articles and information enquiries. Over the last 3 years, these are: Website Visits Website Hits Articles New Enquiries 2012 2011 2010 196,873 6,357,189 77 2,093 131,662 2,389,594 33 1,890 93,699 1,700,587 40 1,925 In 2012, our website had a total of 196,873 visits, more than double the number in 2010. The most popular day to visit our site is on Mondays, with the preferred time being 9 and 10 am (between noon and 1pm running a close second). 68% of our visitors were from Great Britain, 16% from the United States and the rest from 123 other countries. Most visitors typed in our web address directly, or had bookmarked us (75%) or found our website via a search engine (11%); the rest used links on one of 2,972 different webpages. The top 5 were facebook, Babycentre, nhs.uk, emmasdiary and milkchic. Each visit averaged 5 pages, with the most popular downloads being our GBS The Facts for Health Professionals (3,569 downloads), followed by the introductory “Group B Strep & Pregnancy” leaflet (3,524) then our June 2012 report “The case for screening” (2,956 downloads). Our PowerPoint presentations also proved popular, with 2,740 being downloaded. Media coverage about group B Strep and the charity in 2012 included in the Consumer Press (Chat, Living Magazine, Pick Me Up, Pregnancy & birth, Prima Baby, Sussex Life, Sussex Living magazine, Take a Break, That’s Life), Medical Press (Midwives Journal, Operating Theatre Journal), national and regional press (The Daily Express, The Daily Mail, The Daily Mirror, The Daily Telegraph, The Express, The Huffington Post, The Manchester Evening News, The Sun, The Sunday Post, The Telegraph, The Times), on TV and radio (BBC Radio Somerset, Bright fm 106.4, BBC Radio 4 Woman’s Hour, UTV, Granada Television, ITV Anglia) as well as on websites and in local papers (The Argus, The Banbridge Leader, Daily Gazette, Derbyshire Times, Dromore Leader, Essex County Standard, Harlow Star, Hertfordshire Mercury, Huddersfield Daily Examiner, Journal Live, Londonderry Sentinel, Lowestoft Journal, Metro, Mid Sussex Leader, Mid Sussex Times, Milngavie Herald, Northern Echo, Selby Times, Spectator Newspapers, The News (Portsmouth), This is Leicestershire, This is Somerset.co.uk, This is the West Country, Wales Online). What’s the story? A huge thank you to all the families who have helped us, and continue to do so, telling their stories about how GBS has affected them. A personal story will bring an article to life and often tip the balance in favour of it being published. And stories can speak volumes about GBS and bring the spotlight onto why providing information on group B Strep to all expectant and new parents is so important. All stories are important, though sometimes journalists are very specific about what sort of story they’re looking for. During 2012, there have been over 70 articles published in various media concerning GBS, and many of these featured a family telling their stories – from families who found out about group B Strep during pregnancy, Mum had antibiotics in labour and the baby arriving safely to families who had babies sick with GBS infection. If you have a story you’d like to tell and want to help raise much needed awareness, please let us know at info@gbss.co.uk and we’ll help if we can. Would you try to get your local newspaper interested by announcing your fundraising event or your story? You can download our local press release template from the website at www.gbss.org.uk/fundraiserPR Exhibiting for awareness When resources allow, GBSS will speak or exhibit at key healthcare conferences around the country. Many of these important events provide a valuable opportunity for us to speak directly with professionals involved in maternity care about better prevention of GBS infection in newborn babies. Here are some highlights from 2012: 6th LSA National Conference took place in January 2012 at the East Midlands Conference Centre in Nottingham and was attended by just over 500 senior midwives and heads of midwifery. This conference is always busy, providing information to senior health professionals and updating them on the latest guidelines on GBS prevention. Primary Care North Conference in Manchester, January. Jane Plumb MBE, GBSS’ chief executive, spoke on “group B Strep in pregnancy and newborn babies” in the Mother and Baby stream. We also had a stand at the conference, getting information materials to relevant health professionals. Primary Care Conference in Birmingham, May. We have exhibited before at this important two-day conference and this year it was attended by over 5,000 health care delegates including midwives, GPs and health visitors. Royal College of Midwives Annual Conference. This took place later in November, in Brighton. Over 1,000 midwives and student midwives from across the UK came together to discuss and debate key topics that are crucial to the profession, with many student midwives keen to gather GBS information for their dissertations. Speakers included senior politicians, plus international and UK midwifery and maternity experts. Prevention of Perinatal group B streptococcal through Maternal Immunization, Siena. In July, Jane Plumb jointly led one of the workshops at the Novartis GBS Vaccine conference with Gina Burns, President of Group B Strep Association. The conference was devoted to issues surrounding GBS vaccine development. The morning session held presentations on the history and development of a GBS vaccine and the key note speaker was Dr Carol Baker. There was a review of the epidemiology of GBS by Dr Paul Heath; Dr Stephanie Schrag of CDC provided details of the current prevention strategy in the USA. Doctors Mark Steinhoff and Karen Slobod provided detailed discussions of vaccine specifics. The afternoon session comprised six working groups each with 10-15 members. Jane and Gina chaired the GBS Public Awareness, Advocacy group. Key questions arising from the discussion included: 1. How will a vaccine given to a pregnant mother in order to protect her unborn baby be perceived? 2. What are the best methods to disseminate and educate about the upcoming vaccine? 3. Since the vaccine is approximately ten or more years out before it will be ready for the public use, what needs to be done in the meantime to continue bringing awareness to the disease? Jane said, “It was a privilege to be included in this group of incredibly dedicated professionals. We cannot thank them enough for their commitment to this vaccine and to GBS prevention, not just in the newborn, but the mother, those who have chronic diseases, and the elderly. The vaccine would not only be used for protecting newborn babies. We can’t wait.” We’d love to do more presentations to help ensure that relevant health professionals are fully up to date with preventative measures for mums-to-be, and of all the recent changes to relevant guidelines. If you’re interested for your hospital or practice, please do get in touch. 8 Meet the Midwife – Ginny Clayton GBSS put some questions to Ginny to find out what it is really like to be a busy midwife What drew you to the profession? Prior to training as a midwife I was a solicitor for ten years but it was my experience during and after the births of my own two children that started me thinking of retraining and I became fascinated with the role of a midwife. It is true to say that most midwives find it hard to explain why they chose the profession. Often, it can be a desire that they have held from a very young age or sometimes they can be influenced by the care they had during their own pregnancy. Whatever the reason, no two days in the job are ever be the same; Ginny Clayton has been a midwife for five and half years and has lost count of how many babies she has delivered. She is also a Trustee for Group B Strep Support. Describe a typical day (if you can!) There is no such thing as a typical day. I am hospital based so can find myself one day working on the delivery suite caring for a woman in labour and the next on the postnatal ward helping to establish breast feeding. I also work on the antenatal ward, in triage and even sometime in the day assessment unit. What are the most common misconceptions people have about the role? That midwives look after babies – in fact, we spend most of our time supporting expectant women and their partners and subsequently helping them to look after their babies. What have been the best moments? Making a difference to women and their partners during labour and making sure they can look back on it as a wonderful experience. It really is the best job in the world. And the worst? Of course there are sad days and difficult days but our job is just the same, to help the parents cope with the experience the best they can and to support each other when we need it. What advice would you give young, aspiring midwives? That the job is hard work but very rewarding. How long does the training take, where can you find information on where to train and what advice would you give someone wishing to embark on a career as a midwife? The training takes three years and involves time spent both in university and hospital. The best place to start looking for information in the Nursing and Midwifery Council’s website – www.nmc-uk.org. I would recommend they try and get experience of working on a maternity unit even as a volunteer as they need to demonstrate they know exactly what the job involves. What led you to become involved with GBSS? A friend of mine was involved with the charity as her son became infected with GBS and she suggested that I might like to become involved as a trustee. And just for fun? If you have any spare time, what are your favourite hobbies/ pastimes? I walk my dog, do a bit of running and I am involved with my sons’ scout troop and football team. Tea or coffee? Coffee. Stairs or lift? Usually up in the lift and down the stairs! Resources for aspiring midwives: StudentMidwife.net www. studentmidwife.net/ Nursing and Midwifery Council www.nmc-uk.org Royal College of Midwives www.rcm.org.uk/ Volunteer your time Our volunteers’ work is vital to our campaign and we thank everyone who has either raised funds for us, spoken to the media, provided information to health professionals and expectant mums, or simply talked about GBS with friends and family – we need more volunteers so we can do even more! Volunteering is a great way to use skills that you have – or even develop some new ones. Ways to volunteer and help us include : Help raise funds – you could choose to organise your own event or join one of our many challenges taking place around the country. Help out at event near to you – maybe offering a helping hand to keep things moving smoothly, or simply be there to cheer and lend support. Help out in the office – help us stay organised, keeping records up to date or helping us with office-overload and/ or implementing administrative systems. In return, we will support you in all that you undertake on our behalf and aim to provide a positive, friendly environment to work within. Often we are asked, “How much time do I need to give up?,” that is entirely up to you and the role you have chosen to help us in. Our lovely, weekly volunteer Margaret Gomme helping us out in the office Please join us on Facebook, we have a page called Group B Strep Support (just type it into the search on www.facebook.com or go direct to www.facebook.com/GroupBStrepSupport). We now have over 5,000 ‘likes’ and there is a real mix of daily news, views, comments and events. Please join us; you can write on the wall, post photos, videos and links. If you have an event you want to post on there, please give Marie Rothwell the details by contacting her at mrothwell@gbss.org.uk and she will be delighted to help. Please also follow us on Twitter and tweet us. You can join our #TwitterArmy #GBSaware by retweeting our tweets with these hashtags, and creating your own. We have over 5,000 followers on twitter – join us at www.twitter.comg/gbssupport 9 Babies’ Stories We are pleased to include the following stories written by families affected by GBS, and really appreciate their sharing them with us all. If you would like to contact any of these families, please write to them c/o GBSS and we will pass your letter on to them. The stories do not necessarily reflect the views, recommendations or policies of the charity or its supporters. My Two Girls Erin – 27th March 2011 – Sunday (40 weeks+3) My wife, Jillian, had laboured at home and we arrived at the hospital that evening fully expecting to be coming home the next day with our much longed for first baby. A girl that we’d already named Erin. Arriving at the hospital, the Admissions midwife examined Jillian while I parked the car. She was told she was fully dilated, that the midwife could feel our baby’s head, and we’d meet her in an hour. I arrived into the room and the midwife had Jillian hooked up to the foetal heart monitor. I can’t describe it but I felt an instant sense of worry in the room. What seemed like seconds later, we were all being whisked off into a lift. A junior doctor had, as well as a midwife, failed to find Erin’s heartbeat. That, combined with the fact that we had a growing crowd of medical professionals around us who all seemed to be in a panic, I knew that something was wrong… but hoped not. Jillian was wheeled into the delivery room, where a senior doctor performed a visual scan. I’ll never forget what I saw on the monitor. Erin was as clear as day, but where previously you could see her little heart beating, there was nothing. It felt like my whole insides fell to my feet. I knew that what I was looking at meant that Erin had died. The doctor confirmed what I had seen, saying she was so sorry but that it was bad news. I don’t know how we got through the next couple of hours, but we did. We knew our precious baby girl wasn’t going to make her entrance into the world with a cry, but we were still so eager to meet her and hold her. We had her with us in the hospital for four days; four sad, but precious days. We slept with her between us. We dressed her, bathed her and even changed her nappy. On Thursday morning Erin went for her post mortem. We had to try and find out why she died. Nobody had any idea why – she was perfect. We left the hospital later that day with her dressed in a beautiful little outfit picked out by her mother, but in a tiny white casket. Jillian’s parents drove us down to her hometown of Portaferry, and we buried our first born baby in a graveyard beside the church we were married in four years earlier. Nine weeks later we were called to the hospital to hear the findings of Erin’s post mortem. We were told she had died of pneumonia, caused by inhaling amniotic fluid infected with Group B Strep. While waiting for those findings, we did a bit of research ourselves, trying to find out why babies die. We came across GBS for the first time then. When we were told that was what had caused Erin’s death, we were doubly devastated. GBS infection can be prevented, quite easily, but only when it’s been detected. Tragically for Erin and us, we live in a country where GBS is not screened for routinely. If Jillian and I lived in the US, for example, one of the many countries that routinely screen for GBS, it’s almost definite that Erin would be two years, 2 months old now. But she’s not. Erin wasn’t the first baby to die due to GBS infection and sadly she hasn’t been the last. After Erin’s death, Jillian and I were in a daze really, a dark daze. Jillian threw herself into a campaign to raise awareness of GBS in Northern Ireland and we called on our local Government to introduce routine screening. This gave Jillian a focus and I somehow muddled through. Clara 14th August 2012 – Tuesday (38 weeks+3) One morning while out on my mail delivery, I got a phone call from Jillian asking where I was. She said she needed to come and see me, but wouldn’t tell me exactly why. While waiting for her my mind was racing and I started to worry, such was our life then. Jillian pulled up in the car and I got in, fully expecting some awful news. What she then shared lifted my spirits to indescribable heights of joy. In the car’s glove compartment was a positive pregnancy test. We’d been blessed a second time. As much as we both were overjoyed, we were petrified at the same time. GBS doesn’t always go away. Jillian may always be a carrier, a carrier of a bacteria that killed our first baby. We had to keep telling ourselves that the reason Erin died from GBS is that we didn’t know it was there. Now that we did know, we should be able to prevent another tragedy with any new babies. We ordered the ECM Gold Standard test via the links on the GBSS website to find out if Jillian was still carrying the bacteria during the next pregnancy and she was. Again this petrified us but we were armed with information this time, we could do something about it this time. The 14th of August 2012 seemed to take an eternity to arrive but we got there. Our second child, another girl, was born kicking and screaming. Clara Erin Hope Boyd - slightly shorter but heavier than her big sister, and just as beautiful. Clara has brought so much happiness back into our life and she is such a joy, the apple of my eye. It can be hard at times, though, because we’re now so aware of all the things we’re missing out on with Erin, while at the same time feeling so much happiness having Clara to raise. My wife describes our life perfectly. We have two girls and two hearts. One is the heart, still full of love, but that is shattered and will never mend. The other is the heart that is filled only with pure joy and fulfilment. For being blessed with my two girls I will be eternally grateful, and will always be a father to them both. Andrew Boyd 10 Emily’s Story Emily Newton was diagnosed with group B Strep infection shortly after her birth in October 2009. She spent a week in the neonatal intensive care unit at Addenbrooke’s Hospital in Cambridge before being transferred to Colchester Hospital where she spent a further week in the special care baby unit. In addition to the obvious stresses of dealing with a critically ill newborn, the Newtons had a 3 year old son back in Colchester who, having been told he was spending the night with his grandparents when Emily was born, actually ended up staying there for a week. When the Newtons did finally get back to Colchester, mum Su had to spend most of her time in the hospital with Emily, expressing breast milk for her to be tube fed. “I really felt I had abandoned William. To add insult to injury, all this happened during the swine flu outbreak so William wasn’t even allowed to visit his new baby sister!” Whilst in SCBU, during the many ward rounds, one of the paediatricians dropped another bombshell on the Newtons. “Just as we thought Emily had overcome everything the GBS infection had thrown at her, we were told she had a hole in her heart which may require surgery! I thought I had shed all the tears I had during those first critical days, but this news hit me hard.”As it turned out, during regular subsequent check-ups at the heart clinic, the hole closed by itself without the need for surgery, although Emily was also diagnosed with a leaky valve in her heart which is still being monitored. The cardiac doctors are not concerned enough that it requires any treatment, but concerned enough that they wish to monitor it, so she still needs annual check-ups. In the weeks after her discharge from hospital in November 2009, the Newtons started to adjust to being a family of four and looking forward to their first Christmas all together. However, Emily had other plans! “I have no evidence, other than a mother’s intuition, to suggest what happened next was in any way connected to Emily’s GBS infection, but I am convinced that being on a ventilator weakened her lungs.” Emily developed bronchiolitis. A very bad case of bronchiolitis. Emily was now 7 weeks old. Su says, “On a mid-December morning I took Emily to our local walk-in clinic as she had not fed well during the night and she was showing signs of struggling for breath – her tummy was recessing as she fought to fill her lungs. I dithered for an hour or so before going - would they think I was a neurotic mum, over-reacting because of Emily’s previous problems? Or do I go with my instincts and get her checked just to be on the safe side? Never ignore Mothers Intuition!! I’m glad I went to the walk-in clinic when I did. In view of her history, the walk-in clinic told me to take Emily to Colchester Hospital. Then it all got scary again. Because it had been so difficult to intubate her previously (Emily had managed to self-extubate at Addenbrooke’s, after which she was put on CPAP) and because her condition appeared to be deteriorating, the paediatric doctors wanted to get Emily on a ventilator again before it became an emergency to do so. They had to take her to the adult intensive care unit to do this (Su had no idea until now that paediatric and neo-natal intensive care Ella’s Story “I had an amazing pregnancy with all our scans and measurements spot on. We were so excited about our new arrival and had no idea what we were having. I joyfully updated Facebook daily with my ‘peanut’ progress, and so all our family and friends felt like they were a part of my pregnancy. “I was in latent labour from the 4th July and we were sent home from the hospital twice assured that everything was progressing as expected. I eventually I went into established labour and was admitted to the maternity ward in Portsmouth, on the Sunday morning. I had a fantastic, text book labour: in the birthing pool and reaching 10 cm dilated – Baby Frost was almost here! “Sadly we then lost her heartbeat, after many different midwives and doctors tried to find it. It was too late, Ella passed away just minutes before her birth. The reason for this needless loss was a simple, PREVENTABLE infection, GBS”. Natalie Frost units were not available in every hospital – this ensures that the specialist staff and their care and knowledge is not spread too thinly). Knowing how traumatic it was last time they attempted the intubation procedure, I felt helpless, “I was her Mummy but I couldn’t do anything to help. After an hour or so, I was told I could see her. Luckily it had proven easier this time to get her on the ventilator. She looked so vulnerable, all wired up again, cocooned in what looked like bubble wrap. Apparently Emily’s arrival on the intensive care unit caused quite a stir amongst the staff who were used to dealing with adult patients! It was odd to see a tiny baby in their environment. Within a few hours, we were being whisked out of Colchester Hospital in a CATS ambulance with blue lights and sirens blaring to Great Ormond Street. Everyone knows that only the sickest babies go to Great Ormond Street, so the journey was a fraught one for me. Emily spent a few days in isolation in PICU at Great Ormond Street Hospital and was then discharged to one of the wards. Gradually her oxygen levels improved and slowly, slowly, the assistance she needed with her breathing was reduced. Unfortunately, despite her being well enough to be transferred back to our local hospital, there were no beds available (it was what I now know as ‹bronch-season›), so we took up a bed in Great Ormond Street Hospital for a further week.” A week in, Su had to break her promise to William that she would take him to see Father Christmas. Emily was eventually discharged direct from Great Ormond Street Hospital the night before Christmas Eve. Sue continues, “As she gets bigger, the weakness in her lungs seems to improve and each winter she copes a bit better with the coughs and colds. We did have to spend another night in Colchester Hospital with Emily on a nebuliser, but as time goes on, she has needed less intervention. She does still get a bit wheezy, but an asthma inhaler is all she tends to need now.”Su and her family are hugely grateful to the NHS staff at Colchester, Addenbrooke’s and Great Ormond Street Hospitals, who undoubtedly saved Emily’s life. Su says, “My gratitude is matched by my annoyance that, had I been offered antenatal testing for group B Strep, and been given antibiotics in labour, all the pain suffered by Emily, the disruption to our family and the costs of Emily’s medical care (that easily ran into tens of thousands of pounds) could have been avoided.” Su and Steve Newton 11 Oliver’s Story “My name is Michelle Moore I am 32 and a mother of 3. My children are Oliver (5), Chloe (4) and Charlotte (13 months) and all births have been very different. My firstborn is Oliver, born in November 2007. I had a routine swab done at the hospital in Sheffield while I was visiting my mum as we lived up in Scotland at the time. The hospital contacted me direct and my midwife has no idea of this and dismissed it. The swab was done after I developed a small abscess in my groin and was told that I had group B Strep and that I would be given antibiotics in labour (erythromycin as I am allergic to penicillin) and that was about it. After Googling GBS and frightening the life out of myself, I found the charity Group B Strep Support who gave me the information that I needed. I mentioned this to my midwife, who just shrugged and called it scare mongering. All went well with my remaining pregnancy. I had a straight forward labour, apart from a raised temperature and heavy loss of blood! Oliver was born at 23:26 pm and I was brought to the ward at approximately 4am. I was then left alone on the ward. There was no-one else in my bay. I had just got the feeling back in my legs from the epidural and was left alone with my newborn son. I noticed I couldn’t warm him up. He was refusing to feed and was whining and grunting not like a normal newborn.” Michelle called the midwives over and over but they passed her off as an over-bearing mother. Michelle asked to see a doctor and was refused. At 11 am when the doctor came to do his rounds, Michelle demanded he look at Oliver. He took Oliver away and came back and asked if Michelle had noticed he was severely jaundiced. “No” replied Michelle and told him how she had the midwives to look at him over and over and had been ignored. The doctor took Oliver away again and took some bloods from him. When Michelle’s husband was allowed back in after lunch at 2pm, he barely got to look at Oliver. He just had time to take his coat off and go to pick up Oliver when two doctors and a midwife came and said that they needed to take Oliver to SCBU as he was gravely ill and that they needed to perform a lumber puncture. And that was that, they took him! “No explanation, nothing – we just sat there, crestfallen and alone. When we finally got taken round to him at about 7pm that night, he was all machined up, wires everywhere and needles in all his small limbs. We were advised that they thought it was my GBS that was making him so ill and they didn’t know how to treat it and that he had high levels of jaundice. We asked if he would die and we were told he was in a critical condition and they couldn’t get his heart rate down. At that time he was called baby M so we chose the name Oliver as, should he die, we didn’t want him not having a name. It was quite emotional watching them wipe baby Moore out and replace it with Oliver. We had a week of ups and downs.” After a week of Gentamicin and kidney functions tests, the Moores were allowed home. “We still don’t know if the Gentamicin has damaged his kidneys as they lost this test 5 times so they just didn’t repeat it.” All this took place at St Johns, Livingston, Scotland and, understandably, Michelle wanted her next birth in England, in her home town of Sheffield, “I told them of GBS and again I had to fight with them for antibiotics in labour and even a swab! But luckily I had clindamycin in my labour, no temperature and I was home within 12 hours. As I told the hospital, I probably knew more than them about GBS and the signs and symptoms. They did want to keep me in 3 days as a precaution. My third baby was born at the end of 2011 and even then I had to ask for antibiotics and, as I had gestational diabetes, that was their main concern. I was in and out of hospital with that pregnancy and I always asked the midwives their views on GBS. Some were all for promoting testing and antibiotics for GBS, while some were anti testing saying it was a waste of time - so it was quite a mixed bag. I did note that all the doctors had time to speak to me about this and all agreed with the antibiotics. There was, however, some reluctance from some of the midwives. I had clindamycin again before my waters were broken at 38 weeks and no checks or mention was made with GBS – it was all my monitoring. I was again allowed home later the next day.” Michelle Moore Jessica’s Story Jessica was diagnosed with group B Strep Meningitis at one day old. Mum, Nicola Pilling, took her to her local GP out of Hours service as she was making a grunting noise that just didn’t seem right. “The GP referred us straight to our local children’s ward. On our arrival we were met by two nurses, a doctor and a healthcare assistant. I knew it was something bad. The doctors came to talk to us and told us that Jessica needed to have a cannula inserted to administer IV antibiotics and that she needed a lumbar puncture to establish what was wrong with her. We were admitted to the ward and shortly after, Jessica began to fit and stopped breathing. We were then told that she had meningitis. We were admitted to the Paediatric Intensive Care Unit, by which time I was in complete shock. I asked the doctors if Jessica was going to die and their response was that we had a very poorly baby on our hands. The consultants told us that the next 24 hours were crucial and that she needed to start responding to treatment. Our little fighter did just that. I started to express my breast milk and Jessica was fed this through a tube. It was the focus that I needed, knowing that maybe it could help the healing process. We were back on the ward two days later and Jessica was breastfeeding again. We remained in hospital for a week and were allowed home during the day, but back on the ward at night for the following week with the help of our Hospital at Home team. We endured regular visits to the paediatric outpatients department and Jessica was progressing well, meeting all of her developmental milestones. It was with huge relief and many tears that she was finally discharged – without any ill effects from the meningitis – at 17 months old. We feel like the luckiest people in the world and are so thankful to the staff at the hospital and our families for the help and support that they provided that helped us to get through such a devastating period of our lives. We hope that our event will help to raise awareness of this potentially fatal infection as well as much needed funds for GBS Support!” Nicola Pilling 12 Donations Unfortunately, there no prospect of eliminating the problem of group B Streptococcal infections in newborn babies in the foreseeable future. Despite work being undertaken in a number of countries, including the UK, a safe and effective vaccine against group B Strep infection is not yet on the horizon. Furthermore, during the year, UK bodies again recommended against routinely screening for group B Strep late in pregnancy, despite international evidence of the efficacy of this strategy. So, our work is as important as ever and, although so many volunteers do so much, we inevitably need funds. Individuals A huge thank you to everyone who made a donation to GBSS during the year – we really couldn’t do it without you. It’s been a tough year with the economy and our amazing supporters have absolutely come up trumps yet again, entrusting us with their hard-earned cash so that we can make a difference to families in the UK. We continue to be as frugal as we can, whilst still working towards our key objective of preventing as many GBS infections in newborn babies as possible. Thanks one and all. Supporters who made donations during 2012 include: T Abbey, A Abbosh, D Abbotts, J Abbotts, A Abdelharmas, J Aberdein, T Aberdein, K Aberdien & R Rutterford, A Abraham, M Abraham,Y Abraham, M Abrahams, J Acklam, V Acklam, A Adams, D Adams, C Adams, P Adams, M Aitken, K Albans, S Alcock, S Aldridge, D Aldwinckle, C Allen, D Allen, E Allerton, H Allsopp, S Almond, A & S Alsop, I Amro, C Anderson, S Anderson, L Anderson-Chamers, K Andrew, M Anglim, C Aplin, F Apopi, G Archer, D Argent, K Armstrong, R Armstrong, G Arnold, R Ash, J Ashby, J Ashby, P Ashby, Ms L Ashford, G Asling-Carthy, D Asquith, J Atchinson, J Atkinson, L Atkinson, Miss R Attrill, C Attwood, B Austin, M Austin, S Ayers, Organisations During the year, we secured donations from organisations and charitable trusts and are hugely grateful to the following for their support. They include: • Ardwick Trust • Arthur James Paterson Foundation • Betty Stott Medical Research Charitable Trust • Fitzmaurice Charitable Trust • George John and Sheilah Livanos Charitable Trust • Gerald Palmer Eling Trust • Green and Lilian FM Ainsworth and Family Benevolent Fund • Hamilton Wallace Trust • The Hospital Saturday Fund • J K Young Endowment Fund • Longley Trust • Lynn Foundation • Mason Le Page Charitable Trust • Michael & Anna Wix Charitable Trust • Peter Harrison Foundation • VacZine Analytics Group We thank each one of you as you have enabled us to raise so much more awareness than would otherwise have been possible. We have been able to attend conferences and give information materials to so many relevant health professionals – this will made a significant difference to the families in their care. V Aynsley, A Bailey, R Bailey, O Bailey-Green, D Baillie, L Baird, J Baker, Sally Baker, K Baker-Heyes, H Ball, J Ball, M Bamber, C Bambrick, P Bamford, M Bangs, J Banks, K V Barbier, P Barclay, A Barcy, D Barks, L Barnard, R Barnes, J Barr, A Barrett, A Barrie, K Barrow, , S Barr-Young, S Bartle, D Bartlett, K Bartley, S Bastock, C Bater, H Bates, M Batson, S Battisiini, J Batts, A Batty, C Baum, J Baxter, E Bayford, A Bayley, T Beadle, L Beagrie, C Beale, C Beaman, A Beard, s V Beard, J Beasley-Suffolk, E Beaumont, C Beck, S Bedford, P Bedwell, C Beer, J Beeston, A Bell, G Bell, J Bell, M Bell, J Benge, N Benham, D Bennett, G Bennett, K Benson, L Bensted, M Bent, C Bentley, P Benzie, F Berry, L Berry, T Berry, R Bewley, C Bibby, N Bidey, C Billett, A Binnie, M Bird, G Birkett, K Blackwell, K Blades, R Blair, S Blakely, D Blakeney, T Blanchard, J Bland, H Bluff, L Blurton, J Blyth, H Boisseau, L Bo-Kays, M Bolland, A Bond, B Bond, N Bonner, T Boon, A Booth, J Booth, K Boothroyd, S 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Campbell, M Campion, R Cannings, S Cant, M Cantillon, H Capon, A Carlin, K Carr, P Carroll, J Carter, P Carter, T Carter, L Carthy, S Cartwright, J Carty, J Casey, K Casey, M Casey, M Casfzies, T Caspall, L Casson, J Castagnaro, S Castell, K Cauley, A Cawte, A Cecil, J Chalker, N Chamberlain, L Chandler, B Chang-Wilson, A Chaplin, C Chapman, I Chappel, P Chappel, V Chappell, T Charles, S Charlesworth, Joyce Charlton, L Cheadle, M Cheetham, C Cheshire, L Chesterfield, M Chesterton,Y Chetty, D Cheung, D Child, P Childerhouse, Z Childs, C Clark, M Clark, A Clarke, L Clarke, M Clarke, P Clarke, W Clarke, S Clarkson, C Clay, L Clayton, A Cleghorn, J Clements, N Clements, C Clerkin, D Clifford, A Clinton, F Clitheroe, H Clitheroe, M Clutterbuck, F Cocks, J Coe, K Coey, P Cogan, S Cohen, P S Colclough, C Cole, H Cole, J Cole, W R Cole, T Cole, D Coleman, L Coleman, R Coleman, A Coley, P L Collier, R Collier, A Collins, M Collins, S Combes, J Conde, K Connor, J Constable, A Cook, M Cook, S Cook, T Cook, C Cooper, P Cooper, C Copeman, I Corbett-Bromley, J Corcoran, S Corrigan, G Corris, L Cosnett, A Costello, C Costello, L Cotter, G Coupland, P Court, S Court, T Court, A Courtney, R Couzins, M Cowan, K Coward, C Cowdery, C Cowling, J Cox, S Cox, S J Cox, W Cox, S Coyne, W Coyne, M Cracknell, C Cracknell, S Craddock, L Craig, M Craig, V Craig, R Craven, J Crawford, J Crawley, M Cripps, C Crisp, L Croft, C Crompton, S Crompton, W Crook, J Cross, B Cumberland, P Cummings, B Cummins, A Cunningham, M Cunningham, P Cunningham, C Curran, E Currie, E Curtis, G Curtis, A Cutter, E Dalby, D Dale, N Danbury, D Daniel, W Dashwood, A Davenport, A Davies, C Davies, M Davies, Y Davies, R Davies-Payne, H Daws, M Dawson, N Day, S Day, R De Vaux, J Deadman, W Dean, M Deegan, J Deeks, L Deerlove, E DeGory, M Delange, S Dell, T Dell’Avvocato, R Demott, A Denton, K Denton, B Desmond, S Dethick, S Dewis, S Di Girolamo, C Dickson, S Dieni, L Dinsdale, B Dixon, D Dixon, P Dixon, P Dobb, A Dodd, E Dodman, L Dodson, L Doherty, M Dole, S Donaldson, P Doody, U Dormoy, P Doshi, J Doubtfire, J Dougherty, L Douglas, L Douglas, R Douglas, B Dowling, D Downs, J Downs, M Dows-Miller, J Draper, S Drayton, J Druitt, P Drury, C D’Souza, F Dudley, F Duff, M Duffy, P Duggan, M Dulway, I Dunbar, L Dunbar, M Dunbar, A Dunmall, E T Dunne, S Durkin, H Durrance, B Dye, K Dyer, J Dykes, D Earl, K Earnshaw, J East, P Eastburn, R Easterbrook, F Easton, A Ebsworth, S Edmonds, P Edmondson, B Edwards, F Edwards, J Edwards, P Edwards, K J Elkington, M Elliot, R Elliot,Y Elliot-Nichols, J Elliott, l Elliott, G Ellis, L Ellis, M Ellis, M Eltawil, G Emmerson, 13 F Engineri, A English, P English, R Ennis, P Esling, C Evans, F Evans, G Evans, J Evans, K Evans, L Evans, A Evans, S J Evans, K Evered, T Fairbrother, A Fairley, J Fairweather, J Fancett, S Fantham, S Farley, K Farmer, C L Farquhar, D Farrell, E Fassnidge, J Faulkner, N Fawdrey, J Feltham, K Ferguson, D Fern, I Fernandes, A Fettes, J Field, , L Field, P Field, E Filik, F Finch, L Findlay, C Finn, R Fisher, S Fitzell, F C Fitzgibbon, J Fitzherbert, T Fitzpatrick, P Flanagan, C Fletcher, D Fletcher, F J Fletcher, P Fletcher, K Fletcher, B Flooring, T Florence, S Floyd, L Foley, S Forrest, P Forsyth, C Foster, R Foster, V Foster, M Foy, B Foyston, S Francis, A Franklin, C Franklin, H Franklin, T Franklin, S Franks, T Fraser, W Fraser, J French, A Fretter, B Freundlich, B Frost, N Frost, S Frost, C Fry, M Fry, D Fulford, J Fulton, R Funnell, G Furksta, C Gabay, A Gallagher, M Gamble, R Gardiner, J Garfitt, G Garner, A Garnham, D Garnsworthy, C Garrett, F C Garwood, S Garwood, S Gascoigne, V Geer, N Gent, C Gibbins, B Gibbons, B Gibbs, L Gibbs,T Gibson, W Gibson, J Gilbert, J Gilbert, S Gilchrist, S Giles, A Gill, J Gilmore, M Gilson, A Gimson, P Gladwin, M Glassborow, K Gloudemans, J Goddard, L Goddard, M Goddard, A Godfrey, C Godfrey, H Godfrey, J Godfrey, R Godwyn, V Golacit, P Golden, S Goldhawk, M Gomme, J Gooch, M Gooch, J Goodall, D Gorse, D Gosney, A Gough, C Gourlay, C Govind, A Graff, D Graff, A Graham, M Graham, S Graham, A Grainger, P Grant, M Gravenor, D Graves, A Gray, J Gray, L Gray, S Gray, I Greaves, G Green, K Green, M Green, N Greenhalgh, D Greenham, N Greenwood, A Gregory, D Gregory, W Gregory, K Grey, M Grierson, M Griffiths, C Grimes, J Grimwood, M Morris & C Gristey-Morris, P Grogan, A Grove, N Grove, S Gully, K Gunn, M Gunner, J Gurney, G Gyves, H Hagger, J Haider, P Haigh, S Hainge, A Hainstock, N Hajda, P Hak, G Halcrow, A Hale, C Hall, J Hall, S Hall, V Hall, C Halliday, L Halliday, A Hallissey, G Hallissey, A Hallworth, D Hamilton, N Hamilton, I Hamilton-Smith, R Hancock, R Hanmore, L Hannen, M Hardcastle, A Harding, G Harding, K Harding, T HarmanJ Harmon, N Harries, S Harris, J Harris, M Harris, N Harris, A Harrison, E Hart, M Hart, N Harty, A Harvey, J Harvey, T Hassall, A Hassan, M Hattersley, K Haviland, S Haviland, J Hawes, K Hawes, G Hawkes, M Hawkes, M Hawkins & Ms S Otty, I Hawkrigg, R Haycock, G Haycock-West, M Hayes, J Hayter, T Haythornwaite, K Hayward, J Hazel, M Healy, S Heath, B Hebblethwaite, C Hedges, S Hellon, R Hemmens, L Hempenstall, D Hennah, T Henry, J Hepburn, M Herbert, D Herbert, J Herman, L Hernandez, K Herriott, M Heslop, L Hewes, L Hewes, R Hewes, I Hewkins, V Hewkins, S Hickley, J Higgs, P Higgs, R Higgs, D Hill, F Hill, J Hill, J Hill, J Hill, K Hill, L Hill, M Hill, T Hill, L Hillhouse, R Hillstead, I Himstedt, A Ho, B Hoare-Ward, N Hobson, V Hodge, J Hodgkinson, J Hodgson, C Hogg, K Hogg, M Holford, P Holgate, C Holland, P Hollis, D Hollywood, R Holmes, S Holmes, P Holt, D Holwell, G Homer, J Hope, C Hopkin, D Hopkins, M Hopper, A Hopwood, P Hornsey, S Horwood, P Hossack, E Houghton, I Houghton, P Houghton, K Hoult, C Houlton, C House, R House, R Howard, V Howard, M Howarth, T Howe, M Howley, N L Howse, S Howson, I Hoy, A Hoyle, R Hudd, T Huggard, P Huggett, G Huggins, A Hughes, D Hughes, T Hughes, V Hughes, Y Hulyer-McQueen, E Humphreys, C Hunt, C Hunter, V Hunter, J Hurdle, D Hurren, A Hutcheson, A Hutchison, D Hutchison, P Hyams, C Hyde, S Ilott, J Inacio, S Inglis, T Isaacs, O Ivannikova, A Jackson, D Jackson, M Jackson, M Jacobs, A James, G James, T James, S James, J Jaros, L Jarrett, S Jarrett, A Jarvis, E Jempson, H Jempson, L Jenkins, N Jenkins, R Jenkins, T Jenkins, D Jennings, K Jenson, L Jewell, D Johnson, H Johnson, I Johnson, M Johnson, S Johnson, M Johnston, C Jones, D Jones, G Jones, J Jones, J Jones, K Jones, L Jones, P Jones, S Jones, S Jones, M Jordan, P Jordan, S Jowle, F Joy, A Joyce, R Joyce, G Junior, A Jupp, P Juszclyk, E Kang, P Kasberger, H Kay, E Kazmierczak, D Kealy Gregg, J Keeling, P Keir, S Keir & Mr B Hefford, A Keith, H Kelektsoglou, J Kelliher, A Kelly, E Kelly, J Kelly, S Kelly, P Kench, C Kendall, B Kerr, J Kerr, C Kerr, M Kerr, P Kerwin, E Kester, N Kesterton, C Kew, B Khalique, C Kialka, M Kidd, T Kidd, J Kilday, M Kilday, C Kilkenny, J Kilkenny, K Kilkenny, W Kilvington, K King, S Kingdon, K Kipling, S Kirby, C Kirk, M Kirkby Dyer, K Knight, L Knight, J Knowles, K Kumpkin, S Ladd, E laird, S Lake, A Lalanne, R Lamb, J Lambert, F Lambrou, J Lancaster, C Lane, G Langford, S Langley, L Lanham, N Lapage, V Lappin, G Last, L Lavender, L Law, M Lawlor, K Lawrenson, C Lawson, F Lawson, D Layton, N le Bas, C Leach, M Leach, D Leacy, A Lear, S Leather, H Leaver, N Ledger, P Ledger, R Ledger, T Ledger, J Lee, M Lee, R Leedham, K Leeman, S Leete, M Leggett, K C Lehman, R Lehman, D Leigh, S Leighton, G T Lemos, T Lennon, J Lenz, R L’Estrange, J Lewis, N Lewis, R Lewis, S Lewis, M Lilley, C Linnecor, M Lis, A Lister, I Lister, T Lister, N Lloyd Williams, J Loake, S Loates, C Locke, D Lord, I Lorenzo-Toimil, T A Lott, A Lovett, L Low, M Lowe, S Lumb, A Lumsden, N Lumsden, P Lunn, S Lunt, A Luther-Jones, C Lyall, J Lyddy, C Macdonald, V MacDonald, F MacDougall, D MacGabhann, A Macmillan, P Madden, H Maddocks, Claire Madeira, A Madigan, Mr L Madigan, S Madigan, Lise Madsen, A Magee, A Maguire, S Maidwell, K Mair, H Maitland Davie, C Malin, R Mander, C Mangles, R Manners, N Manolescu, J Mansell, A Marchant, L Markey, J Marrazza, P Marrazza, R Marrazza, H Marsh, L Marsh, T Marsh, A Marshall, G Marshall, M Marshall, D Martin, L Martin, T Martin, M Martyn, , K Maryan, A Masters, E Mathison, N Mathse, C Matthews, K Matthews, S Matthews, A Mawer, G May, J May, E McAleese, P McCalvey, S McCambridge, A McCauley, C McCauley, K McCloud, M McCombie, O McCormick, S McCormick, R McCreadie, B McCrystal, N McCurtin, C McCutcheon, A McDonagh, E McDonagh, L McDonald, P McEdlderry, G McFee, A McGee, L McGovern, C McGowan, M McGowan, D Mcintyre, A Mckechnie, G McKeown, N McKeown, B McKerchar, J McKnight, A McLaren, G Mclaughlin, K McLaughlin, A McMenemy, J McMillan, S McMurray, H McNaught, M McNaughton, S McNeill, L McNeilly, M McNestry, N McPhee, R McShee, P Mcvey, J McWatt, L Meaden, L Melchoir, S Mendes, J Menell, L Mepsted, S Mercer, V Merino, A Merrett, C Merryweather, B Messinger, K Mew, S Meynell, L Middleton, K Mikolajow, R Miles, R Mill, L Millar, E Millard, D Miller, K Miller, P Miller, T Miller, K Milligan, L Millsopp, D Milock, L Milock, J Minto, A C Mitchell, A Mitchell, L Mitchell, M Mitchell, P Mitchell, C Mitchener, R Mogg, A Mohammed, C Molyneux, P Molyneux, C Montgomery, A Mooney, A Moore, K Moore, L Moore, S Moore, M Moorhouse, C Morecroft, C Morgan, K Morgan, N Morgan, K Morley, L Morley, S Morley, E Morris, J Morris, N Morris, S Morris, K Morrison, K Morrow, M Morrow, V Morse, A E Morton, F Morum, I Moulds, J Muir, L Muirhead, C Mulqueen, C Mumford, E Mundy, J Munro, T Munro, D Murphy, A Murray, E Murray, J Naylor, C Neville, L Neville, J Nevin, P P Newman, R Newson, S Newton, L Nicholson, M Nicholson, G Nixon, D Noonan, J Norman, L Norris, D Northage, K Northorpe, T Nosal, M Notarantonio, C Nugent, E Nunn, A Nuttall, L Oakley, A Oakshott,T O’Brien, P O’Callaghan, B O’Dea, N O’Kane, J O’Kill, B Oliphany, R Ollett, E Omelia, L O’Rourke, J O’Rourke & K McDougall, S Orton, K Othen, S Otty, A Oumou, V Overs, J Ovington, C Owen, D Owen, J Owen, D Oxley, A Oza, C Paduano, T Page, A Painter, M Pajda, E Palmer, L Palmer, V Panhania, S Parham, A Parker, C Parker, K Parker, ` C Parker & Mr C Brodie, G Parker-White, F Parkhouse, S Parnell, D Parr, B Parr, M Parry, E Parsons, N Parsons, C Pass, D Passman, A Patchett, L Patelaros, C Pattinson, B Paul, A Pawley, A Peake, J Pearce, L Pearce, S Pedrosa Alquezar, S Pegg, J Pendei, L Pendry, K Penny, C Peretti, C Perkins, M Permain, M Perrett, J Persh, T Petey, M Philip, D Phillip, C Phillippo, C Phillips, , D Phillips, N Phillips, J Philpott, L Phipps, M Phull, R Piercey, S Pilbeam, N Pilling, R Pitkeathley, L Pitts, B Plant, J Plant, L Plant, C Platel, R Plumb, O Plumb, I Pogue, T Pollitt, N Pomeroy, C Pool, A Pope, C Popovic, L Porter, J Poskitt, H Potter, A Poulain, C Poulton, J Powell, S Powers, E Powling, J Preshaw, C Preston, K Preston, H Price, L Price, M Price, P Price, S Price, J Priscott, C Pritchard, R Pritty, J Prothero, S Pullen, A Pulvirenti, J Punchbeck, A Pym, M Quick, E Quilton, C Quincey, J Quinn, L Quinn, S Quinn, M Rabinouwit, K Radomski, J Rafferty, V Raison, R Halai, D A Ramsay, L Ramsey, I Ransbey, S Ratcliffe, E Raven, R Raw, G Rawlings, J Rawlings, L Rawlings, S Rawlings, M Raybould, A Read, L Read, C Reading, A Reay, J Redley, B Redman, R Redpath, K Reed, K Reeks, T Reid, R Reilly, M Reilly & M O’Donnell, S Remnant, A Revett, M Rhodes, P Rich, S Rich, C Richards, E Richards, J Richards, M Rickerby, E Ridout, C Rigby-Smith, A Rintoul, S Roberts, L Roberts, D Robertson, J Robertson, T Robertson, H Robinson, M Robinson, J Roby, A Rockett, B Rodden, D Rodden, M Rodden, P Rodden, R Rodmell, G Rogers, M Rogers, P Rogers, G Rogerson, J Roghe, L Rolfe, N Rolfe, P Ronan, L Rook, G Ropundhill, M Rosen, L Roser, B Rosling, A Ross, C Ross, E Rouse, J Rowe, K Rowland, A Rowlands, A Rowlands, J Rowlands, M Rowlands, B Rowley, J Rowley, C Roylance, J Ruff, R Ruff, E Russel, J Russel, G Russell, R Russell, J Rust, T Ryan, M Ryan-Sak, N Sadler, A Saer, J Saireeves, D Salanson, J C Salmon, D Sandison, J Saunders, I Saunders, K Saunders, V Saunders, I Savage, G Sawyer, S Sawyer, D Scallan, S Schaffa, B Schlesinger, O Schmool, J Scott, K Scott, P Scott, S Scott, W Scott, M Scriven, P Scriven, A Seaman, A Searle, S Seaton, C Sedgwick, K Selman, L Sharpe, E Shaw, J Shaw, S Shaw, D Sheaff, A Sheard, A Shefield, K Sheldrake, F Sheperd, l Sheperdson, S Shoebridge, H Shorrock, K Short, K Shortman, K Shrubb, S Siddons, D Simmonds, S Simons, F Simpson, G Simpson,Y Simpson, J Sinclair, M Sinclair, N Sinclair, N Singleton, K Sinnott, D Sissons, J Sissons, L Sissons, S Skeldon, A Skinner, M Skinner, A Skivington, D Slater, C Smethurst, A Smith, C Smith, D Smith, G Smith, H Smith, J Smith, R Smith, K Smith, M Smith, N Smith, P Smith, R Smith, S Smith, W Smith, Z Smith, C Smyth, S Snow, S Soin, A Spackman, L Sparey, L Spargo, R Sparling, P Spencer, S Spooner, R Springate, I Springett, K Spruels, K Squirrel, L Stalker, R Stansfield, S Stanton, J Stark, C Stead, D Steele, K Steele, O Steele, D Steer, PJ Steer, L Stemp, S Stemp, J Stephen, P Stevens, M Stewart, S Stewart, C Stoddart, P Stonebridge, M Stoneley, T Storer, N Stormont, C Storr, S Street, K Stringer, N Stuart, S Stubbs, V Stubbs, P Sturgess, R Stutchbury, M Stuy, J Stygall, L Styles, C Sudre, M Suffolk, Sharon Sullivan, E Surginor, E Sutherland, S Sverrisdottir, R Swainson, D A Swallow, L Swallow, R Swallow, E Swannell, H Swatton, C Sweeney, S Sweeney, E Sweet, L Swift, M Swift, P Swiggs, K Sydenham, C Sykes, M Sykes, S Sykes, M Symons, T Tage, H Talbot, N Tatlow, A Taylor, C Taylor, E Taylor, F Taylor, L Taylor, S Taylor, J Tear, K Tebble, L Templeman, C Tesseyman, M Thomas, S Thomas, B Thompson, K Thompson, I Thompson, R Thompson, D Thomson, K Thomson, H Thornley, G Thornton, T Thornton, T Thurtle, P Tidman, L Tierney, G Tijou, C Tilcock, M Tilsey, G Timson, N Titman, A Tlibb, K Toimil-Bramhall, A Tomes, L Tomkins, R Tomlinson, S Tonkinson, S Toon, R Topher, D Torrance, R Trace, J Tranter, M Travis, H Trew, K Trew, G Trickey, G Trueman, L Tupper, A Turbutt, C Turner, I Turner, J Turner, S Turner, E Turner-Bone, B Turvey, G Tuson, E Tweedale, D Twidle, J Tye, K Tyminska, T Ungi, S Ungi, P Upson, D Upson, M Van Den Hurk, C Van Wijk, L Vanderbloem, C Vanner, G Vanner, s J Vanner, K Varley, C Varty,Y Vasatis, J Venning, F Vieceli, J Viner, J Vitali, I Voice, A Waite, B Walker, G Walker, P Walker, S Walker, S Walker-Reilly, l Waller, P Walling, L Wallis, C Walters, A Walton, S Wansborough, A Warburton, C Ward, D Ward, M Ward, P Ward, S Ward, E Warnes, L Waterhoue, L Waters, T Watkin, B Watkin Evans, S Watmough, D Watson, J Watson, K Watson, T Watson, R Waugh, M Weatherill, A Webb, D Webb, J Webb, K Webb, R Webb, S Weir, S Welburn, S Welch, G Wells, A Wentzel, L West, P West, J Westaway, D Weston, T Westwood, M Wheeldon, B Whibley, P Whitaker, A White, C White, D White, K White, M White, T White, M Whitford, N Whiting, P Whiting, R Whittington, J Whyte, S Wickenden, L Widdowson, M Widdowson, R Wilcocks, M Wild, S Wild, A Wilde, A Wilkinson, L J Wilkinson, P Wilkinson, A Wilknson, L Willard, T Willers, C Williams, J Williams, K Williams, P Williams, T Williams, C Willis, J Willis, M Willis, A Wilson, D Wilson, H Wilson, J Wilson, O Wilson, S Wilson, T Wilson, S Windrum, A Winfield, K Winfield, J Winslade, V Wintersgill-Taylor, H Witchell, A Withers, C Withers, B Wollaston, C Wollweber, C Wood, J Wood, P Wood, J Woodley, K Woodley, V Woodman, W Woolston, A Woosey, C Worlin, L Worsley, J Worsley, C Wrench, C Wrigh, C Wright, J Wright, D Wright, , K Wright, L Wright, M Wright, R Wright, L Wroth, S Wynne, A Yarnell, L Yates-Bissett, S Yeabsley, L Yeo, N Yeomans, J Young, R Young, T Young, P Youngs, N Yusuf, C Zelarayan, 14 Why fundraise? How the money is spent GBSS receives no funding from the Government; and relies heavily upon donations received from its members, supporters and others interested in our work. Fundraising is therefore essential to help the charity reach its objectives, which are to: It costs approximately 4p just to print a leaflet to give to a pregnant woman as a routine part of her antenatal care. • Offer information and support to pregnant women and families affected by GBS • Inform health professionals and individuals how most GBS infections in newborn babies can be prevented • Generate continued support for research into preventing GBS infections. We are amazed at the lengths people will go to in order to fundraise on GBSS’s behalf, so often pushing themselves above and beyond with extraordinary personal challenges. Whatever you choose to do – jumping from a plane, running in a race when you have never run before, or baking a cake - it is fantastic and helps us do so many things and help more parents become aware. On a larger scale, it costs over £5,000 to send leaflets and posters to antenatal clinics, antenatal wards, postnatal wards, special care baby units, community midwives, heads of midwifery, clinical directors of obstetrics and gynaecology and medical librarians around the UK. If you are fundraising, we have on our media page a sample press release which you can use for your local press and tips on how to approach the media. Getting coverage for your event means more people will become aware of group B Strep and that is so important. And, who knows, you might even get more supporters! Thank you all for your help and support – we can’t thank you enough. Awareness Months 2012 We had two awareness months during 2012 – firstly, we kicked off with International Prenatal Infection Prevention Month in February. We launched a media campaign, which resulted in Prof Philip Steer (Chairman of the charity’s medical advisory panel and Emeritus professor at Imperial College and consultant obstetrician at the Chelsea and Westminster Hospital in London) and Charlotte Cheshire (Adam’s Mum) being interviewed on Women’s Hour on BBC Radio 4. You can listen to this online at It costs approximately £250 a month to run the communications in the office – a huge amount of time is spent offering information and support by phone, email, social media and the website. www.bbc.co.uk/programmes/ p00p8k8j July was International Group B Strep Awareness Month – just ahead of this, we launched our 2012 report in the House of Commons, highlighting the various approaches to GBS prevention. That, coupled with loads of activity from supporters, resulted in lots of articles in the press. And behind the scenes, we were shipping out loads of information materials to health professionals to maternity units around the country. A SIMPLE TEST TO SAVE A LIFE Group B Streptococcus is the most common cause of life-threatening infection in newborn babies, in the UK we don’t prevent it very well GBS infection in newborn babies up by 25% in the last decade(1) 30% of women carry GBS without harm or symptoms ur to mums with Intravenous antibiotics given in labo ction in newborn infe GBS ces redu recognised risk factors 90% over babies by out of every 300 babies Without preventative medicine 1 become seriously ill, 10% ld wou born to women carrying GBS some survivors will suffer and die, will ies of these sick bab life-long consequences Risk Factors • a• a• a• a• What to do Ask your midwife or doctor about GBS Visit www.gbss.org.uk/pregnant Contact Group B Strep Support GBS detected from urine sample or swab from mum during this pregnancy A previous sibling having had GBS infection Mum’s waters breaking more than 18 hours before delivery Labour starting or waters breaking before 37 completed weeks of pregnancy Mum having a fever in labour “Life-threatening group B Strep infections in newborn babies can usually be prevented – get informed and protect your baby.” Dr Chris Steele MBE Patron of Group B Strep Support SOURCES 1 2003 HPA EW&NI 0.37/1000 or 229 babies; 2011 0.38/1000 or 281 babies) 2 HPA Guideline www.hpa.org.uk/webc/HPAwebFile/HPAweb_C/1317132860736 t Tes for S GB How common is GBS? Prevention ‘Gold testin Standard ’ enr g (2) i i statu s s in l a good ched cult predi u a b o ECM ur ctor re mediu T of GB m recta esting fo S car (ECM) l swa r GB riage S b s c arr taken Not a ll at 35 iage requ with NHS hos -37 w ir pitals your eeks es vagin obste al o o f f pre f ECM e r tricia gnan and t n or the ECM cy arou ests are a a t e t s w t nd £ s: lso a ww.g 35 vaila bss.o check ble p rg.uk rivat /test ely fo r Preventing GBS infection in newborn babies PO Box 203, Haywards Heath, West Sussex RHI6 IGF Tel/answerphone: 01444 416176 E-mail: info@gbss.org.uk www.gbss.org.uk Regd charity No: 1112065 Regd in England No: 5587535 15 Fundraising news a huge thank you to: Amelia Saer Dress Down Day Amelia was born in 1996 with a GBS infection. Fortunately she made a full recovery. Amelia wanted to help raise money for the charity so chose GBS as her charity for her Duke of Edinburgh challenge, she organised a school dress down day which was a huge success and raised £350.00 for the charity. Andrea English Adnams 10K Southwold, Suffolk 18 November The day of the Adnams’ 10k dawned. It was sunny and bright, perfect weather for a run around Southwold. As Andrea lined up with the other runners, she soon realised that there wasn’t the word ‘fun’ in the title of the race and seemed to be surrounded by some very serious participants wearing running club t-shirts and warming up in a very professional way. “I shuffled to the back, standing proud in my Group B Strep Support running vest. My aim was to get round in one piece!” The hooter sounded and the runners were off. Andrea was taken along by the other runners at rather a fast pace and was exhausted by the time the 1k marker came up. And there was another 9k to go! The other runners disappeared into the distance and ended up as tiny specks on the horizon. Andrea had no choice but to carry on amid cheers of ‘Come on Andrea’. “I was lapped by the elite rather quickly but my mantra was ‘keep going’, it’s for Group B Strep Support and think of Orla.” Slowly Andrea became aware that she might just be the only person still dragging herself around the course but as she reached the final hill, amazingly there were still people behind me. “Somehow, my leaden legs decided to gain pace and I sprinted to the finish. Yipeeee!” Andrea’s beetroot-face and breathlessness had obviously spurred people into supporting her on the day and she received further donations at the finish line. Andrea started training using a ‘couch potato to 5k’ NHS podcast “When I started, I couldn’t even jog for three minutes, but nine months later I can do just about an hour without stopping. Just a little bit more and that’s the 10k done!” Andrea says to anyone out there considering running, “Give it a go. If I can do it, so can you and if you’ve got something to aim towards you are more determined to carry on.” Andrea raised an amazing £467.35. Andy Cotton Ipswich Big Fun Run 21 October Andy’s partner’s sister Megan sadly died of GBS in October 1998 shortly before being born. Andy said “I’m raising much needed funds for Group B Strep Support, a charity very close to mine, and my partner’s heart.” Andy did really well and finished the 5k race in around 23 minutes coming 30th out of 226! He raised over £235.00 for the charity. Amanda Hutchison Manchester Big Fun Run, 11 August Amanda took part in the Manchester 5K Big Fun Run on 11 August 2012. Amanda said “I’m really glad I did the run, I’m not sporty in the slightest but decided to give it a go and have really enjoyed it. It is also wonderful to contribute to such a wonderful charity. My niece was very poorly as a baby with GBS and Amanda on the left and her friend Leander getting ready to go! I was shocked at how common it is, particularly as I have 2 children and have never heard of it before!” Amanda raised £368.75 wonderful. Andy Rowlands Coventry Half Marathon 14 October “When I look back on the stress the whole family went through during Toby’s birth and early days. I now just think it was so worth it, it pulled us closer together and as a family we are closer than ever. “We have since had an amazing 11 months together and there have been some small lows, but every day is just a joy having our cheeky little boy with us.” This was Andy’s third half marathon; Andy decided to run for the charity after his wife Michelle was told at 26 weeks’ pregnant that she was a carrier. Andy and his wife found this very worrying as they were given very little information at the hospital. Andy raised a wonderful £275.00 for GBSS. Toby was born but was very ill, he had to have a course of antibiotics and a lumbar puncture, the first few days of his life were touch and go and Michelle too was very ill. Thankfully both pulled through. Andy said “I am very proud of myself for completing the half marathon in such a good time, 1hr 46mins, all the training and effort paid off. “The support my friends and family gave me leading up to and during the event (especially financially) really helped push me. My wife Michelle was especially supportive even after all she had been through just a few months earlier. Ardingly College Fundraising The girls of Aberdeen House at Ardingly College in Sussex, raised £100 for GBSS after the charity was nominated by pupil Izzie Hughes. 16 Natalie & Mike Frost, Bee Aware – Family Fundraising Event Saturday 11 August Ye Olde Oyster House, Milton Cathy Wright Sky Jump in Las Vegas 3 October Cathy was brave enough to do a 500ft zip wire at the Oval cricket ground in 2011 for GBSS. She contacted us again because she was planning a trip to Las Vegas and decided she would like to do another zip wire while she was there, this time it was going to be a vertical zip wire from the 108th floor of the Stratosphere hotel – approximately 855 feet. Cathy said “Yes I’m am mad but it’s something I feel I have to do” “What an amazing day! The sun was shining and everyone had lots of fun! We raised a fantastic total of £2,977 by having a BBQ, a cake sale, a raffle, lots of children’s games, a silent auction, a man auction in the evening and from lots of generous donations from our supporters! Special thanks to the staff at the Oyster House for helping us put on the event and to the staff at the Thatched House for donating their tips! Mike Frost after presenting Jane Plumb Chief Executive of GBSS with a cheque for the Bee’s on Ben Nevis challenge. “We truly hope that all our efforts will help to reduce the tragic loss of life & spare more parents from the utter heartbreak we, and so many others have had to endure.” Here’s a picture of Cathy before she jumped The climb and the fundraising day were held in memory of the Frost’s beautiful daughter Ella, and we are very grateful & proud that they were SO successful, see page 21 for further detail. “ I can promise you I actually did do it. Once I was on my way it was great, but quite scary before. It wasn’t the height that phased me, it didn’t feel like you were attached to anything. They just said let go and you’ll be fine. It took me quite a few minutes to feel confident enough to do it. They increased the tension on the wire so I felt more secure then I was OK to go.” Huge thanks to Cathy who raised £431.28 for GBSS. The Stratosphere Tower Four little Bee’s at the Fun day There was a great turnout on the day Marie Hattersley Ebay Auctions 25 February Marie auctioned lots of items on Ebay – things of her own, things donated from friends and family – a percentage of the sales donated to GBSS. The week was a huge success and Marie raised £1000.00! Leanne & Shea Breen & family Belfast Marathon 7 May Leanne and her brother Shea along with three other family members Anthony, Hannah and John, formed a relay to take part in the Belfast City Marathon. however, she helped by collecting sponsorship donations. Together the Breen family raised £848.28 for GBSS in memory of Shea and Charlene’s daughter Eva Belle. Leanne said “The weather was horrendous. It rained heavily and it was windy for the whole marathon but we did it! “There was a good atmosphere so that kept us going along with the reason why we were doing it in the first place. We were all very cold and wet by the end of it but it felt great to have done it and I for one enjoyed it. Plus we had our parents and sisters waiting in the rain to cheer us on at the four change-over points. “The GBSS charity and work that they do is hugely important to us and one that is very close to our hearts,” said Chris. “Any chance we have of raising awareness and fund raising we are eager to do and this is just our little way of giving a little back to Jane, Marie and the rest of the team in their continuous quest to make this a routine test during pregnancy to avoid something that could be prevented. I completed the 10k in 53 minutes which I was happy with as it was a red hot day”. Chris raised £1390.77. Chris after his race with Bethany and Mikey Jon & Caroline Constable Memorial Fund for Samuel Constable Leanne, Shea, Jon and Hannah “It’s hard to believe that Samuel would have been 3 years old on Friday 15th June. Samuel was taken from us by the Group B Streptococcus bacteria which got into his lungs and caused pneumonia. “We feel so blessed that Samuel’s baby sister Faith is with us, but it breaks our heart watching her grow up without her older brother to play with and makes us realise just how many milestones we have missed with Samuel.” “We managed to complete the marathon in 4 hours 10 minutes and 24 seconds with Shea running the last leg and Charlene waiting on him at the finishing line.” Shea’s wife Charlene couldn’t run as she was pregnant at the time Chris Walsh Leeds 10k 8 July One of the things that kept John and Caroline Constable going is the hope that with all the work this charity does, it will make a difference and will stop other families experiencing such a tragic loss, Jon took on the challenge of cycling from London to Brighton to help raise funds for the charity, he raised a whopping £5,245.51. Shea & Charlene Thank you to both Jon and Caroline for their continued support. 17 Clare Billet & Mouchel – Dress Down Day May Clare who works for Mouchel, an international infrastructure and business services group contacted us to let us know that GBSS had been chosen to receive the proceeds from one of their dress down days. At the beginning of each year employees nominate a charity, and GBSS was Clare’s nominated charity. “Luckily, we were picked. Everyone dressed down and donated a £1.” Clare said “I discovered I had group B Strep whilst pregnant with my first baby. It was something I had never heard of before and do not feel there is enough emphasis on it.” Thank you Clare for putting the charity forward and to the employees of Mouchel for donating £198.72 to GBSS. Classic Collection Holidays – Team Atlantic Cake Sale November Trudy Charles from Team Atlantic told us “Our team all love baking so we thought it would be a great idea to all bring in samples of our baking and sell them for charity. “We chose GBSS to donate to as my daughter Alexie was born with a strep B infection. We were very lucky to have an excellent midwife who spotted her condition straight away and got her on antibiotics the night she was born.” Alexie made a full recovery and is a very happy and healthy toddler. “Since then I have always followed the work that GBSS do and would love to see better screening in this country as well as an increased awareness amongst medical professionals.” Trudy sent us some pictures of the cakes and they look amazing – shame GBSS couldn’t pop in to try some! The cake sale was very popular and helped raise £150.00 for GBSS. Dan Milock & friends run the Hadley 10K 3 June “ The weather wasn’t kind to us on the day, but the first 6-7 k were fine, it was after that I struggled slightly but the 3 of us, myself and my good friends Mike Gooch and John Acklam kept each other going and in the final kilometre or so I had to really remember why I was doing it, it was in memory of my daughter Isla who Clare Phillips Fundraising Fete 24 August Clare and her family organised a fundraising fete at her local pub garden in Hull. Clare had arranged lots of fun things for everyone to do. The day was going really well with everyone having a wonderful time until bad weather forced it to finish early which was a real shame. Even with the bad weather interrupting the fete, raised £540.00 for GBSS. Huge thanks to Clare and her family. Emma Bowden Sky Dive for GBSS Emma’s sky dive was planned for the 5th July but due to bad weather. It was postponed until August. Luckily the weather was fine for jumping and Emma bravely completed the jump raising £280.00 for GBSS. John Godfrey and James Watson – October Windsor half marathon John Godfrey and James Watson took part in the 2012 Windsor half marathon on 7 October. James said “It was mine and John’s (Godfrey) pleasure to run for you guys. Our close friend Kirsti lost her little girl to the infection and informed us of the charity. Glen Thornton’s – 60th Birthday Party June Glen and Christine thought that Glen’s 60th Birthday party would be a great way of raising awareness and funds for GBSS. They asked friends and family instead of buying Glen a birthday present if they would consider donating to the charity. Glen and Christine’s granddaughter Olivia was born with a Group B Strep infection and spent seven day’s on life support, thankfully she pulled through and recovered fully. The party was a wonderful success everyone attended had a great time and together their friends and family raised £497.44. Kamie Elkington Great Manchester Run 20 May “The run was brilliant, great atmosphere and I’m glad I did it for GBSS, I wanted to run for this charity as I lost my baby at 20 weeks pre term and the post mortem said Strep B was found I had never heard of it before so I wanted to raise more awareness. My daughter’s due date was May, the same as the Manchester run so that gave me inspiration to get motivated.” “The run went ok and was a great experience with a brilliant atmosphere. I think I completed it in 1hour 40mins (with a ten min queue for the loo half way round) so I am very proud.” Kamie raised £175.00 which is fantastic, well done Kamie. We actually really enjoyed the run, luckily the weather was kind to us and we had a few supporters to cheer us round!” had contracted GBS at just a few hours old, the fight and courage she showed for the 5 days she was with us far outweighed what I was going through. Between myself Mike and John we’ve raised over £1500 for your wonderful charity. “My wife Emma and I know how much it helps, it was a pleasure running for you and we wore our GBSS t-shirts with enormous pride. Let’s keep the charity on people’s minds always!” Dan, Mike and John raised in total £1912.57 Amazing! Thanks guys for all your hard work. James and John both completed the race and raised a fantastic £1394.62 for Group B Strep Support. Emma, Lauren & Liam Taylor Big Fun Run Southampton 20 October Emma and her children Liam and Lauren took part in the 5K Big Fun Run in Southampton. The event was held at Southampton Common. The family had a great time and raised £20 for the charity. Maria Cook Fundraising stall August Maria has been a supporter of GBSS since the loss of her daughter Megan in October 1998. On 4 August Maria ran a stall at her local Church fundraising fete and raised £50.00 for GBSS. 18 Emma Rouse Cardiff Half Marathon 14 October Emma and her Niece Stephanie signed up to run in the Cardiff half marathon Emma wanted to help raise funds for the charity who gave her much needed support and information following the death of her baby from GBS infection. Emma and Stephanie before the race Emma said “Stephanie and I completed the half marathon in 2 hours and 3 minutes so we are both very pleased. It was a beautifully sunny day but very cold the event itself was amazing”. It was part of a busy weekend for Emma as on the day before the half marathon Emma and her daughter Isabelle arranged a coffee morning and cake sale at their house, Emma told us “The cake sale was a huge success. We met so many new The cakes neighbours and it was a lovely day with people staying for a few hours and catching up with people they hadn’t spoken to for years. We raised an amazing £536!” Emma’s daughter Isabelle was very keen to do her own thing to help spread the word about GBS so when her school Howell’s School, Llandaff had a ‘wear your own clothes to school day’ on 12 October 2012 Isabelle came Helpers at the cake sale up with the idea for everyone to dress in yellow for GBSS. The whole of the junior school took part, and the day was a great success raising £382.00. Emma told us “Isabelle made a lovely comment about how she felt when she walked into school last Friday. It was something like ...”my heart almost burst when I walked into school and saw all the girls dressed in yellow and I knew it was to support us. People really care.” Huge thanks go to the Principal Mrs Judith Ashill for all her support and to everyone who took part. Isabelle didn’t stop there – she wrote to her local Sainsbury’s to ask permission to stand outside with her mum handing out information leaflets and collecting donations one Saturday. They were given permission and it went really well, they managed to raise lots of awareness. After a very busy few weeks Emma said “David and I have been so amazed by everyone’s generosity and Isabelle has had a brilliant time.” Emma with the help from Isabelle and Stephanie has raised a total of £1473.00 Fantastic. Isabelle and the class of 5S (Isabelle is in the blue GBSS T-shirt). Jaime Goddard Children’s Summer Ball 15 July Jaime felt the need to do something for GBSS after her son Teddy contracted GBS Meningitis when he was born. Fortunately Teddy recovered and is doing really well. Jaime came up with the idea of a Children’s Summer Ball, She set the date for 15 July and set to work planning the event. The party was held at The Abbey Hill Golf Club in Milton Keynes, it was a hugely successful night. Everyone dressed up. Jaime had organised food, a disco and entertainer, a raffle with great prizes donated including; vouchers for the Rainforest Café and TGI Friday’s, a micro scooter, a Snozone voucher, a bag from River Island and lots, lots more. They even had a professional photographer coming to take pictures so families could buy a memento of the event with all the money going to the charity. A wonderful evening was had by all and Jaime raised £2870.00 for GBSS – Amazing. Helen Cole Family Fundraising Walk 30 September Helen helped organise a 4.5 mile family walk around Virginia Waters in Farnborough with a lovely picnic for everyone afterwards. Helen carried GBS when she was pregnant with her daughter Zoe and wanted to help raise awareness and funds for GBSS. The day was a success with everyone having a wonderful time a great deal of awareness so far we have received £26.50 with more still to come. Hayley & Scott Bradshaw Big Fun Run Sheffield “We decided to do the Big Fun Run again this year to raise funds for GBSS. We last did it in 2010, as I was busy having George last year!” “It was a really great day. I was worried about taking part in a running event now, as, although I’ve previously been quite fit and active, I’ve found it more difficult to get back into shape and fitness after having had my third baby, George. But I managed to get round the track in only a few minutes slower than my personal best, so I was really chuffed! Again, it was great to have Alfie & Mollie run with me the last 100 meters, cross the line, and craftily claim a goodie bag! “We’ve always done fundraising for GBSS. It all started when our eldest, Alfie, contracted GBS meningitis when he was born in 2006. He’s a perfectly fit young lad now, but the memories of the tortuous days sat in the special care baby unit, and days afterwards on the postnatal ward with him having antibiotics through a cannula, don’t go away. It was an easier affair when I had Mollie & George, as it was in my notes and I had preventative antibiotics in labour with them both, and felt that I was able to have a conversation with my midwives, which of course never ever happened when I was pregnant with Alfie. “I can completely understand that there is so much out there in terms of information and stories that would probably put people off having babies! But it’s so important that information is available, and that women are given the informed choice, about what to do and what to be tested for. “I’m so glad that we chose to do this event, and roll on next year!” Hayley and Scott raised £609.44. Keith Watson Coast to Coast cycle ride June Keith took on the challenge of cycling coast to coast for GBSS, accompanied by friends. He completed his challenge and raised £175.00 for GBSS. Jane Ashby Henley Half Marathon 14 October Jane said, “I said I’d never run another marathon (14 years ago!) but I thought that maybe a half marathon would be ‘fun’? I took up running again after we lost our baby Harriet to Group B Strep in 2009 at only one day old. Sadly, this was the first that we had heard of Group B Strep which is commonly carried by healthy pregnant women”. Jane completed the half marathon raising an amazing £918.25. Kirsti Trew Zumba Party April On Good Friday, 6 April Kirsti, who has been a long-time supporter of GBSS, hosted a Zumba Party at The Meadhurst Club in Sunbury all in aid of Group B Strep Support. It was a happy occasion to mark the 10th birthday of Kirsti’s daughter Molly, who was stillborn due to GBS infection. As well as the Zumba dancing they held a balloon race and other fun activities. Kirsti said “The Zumba party was a huge success raising £923.08 for GBSS and of course making a lot more people aware.” Huge thanks to Kirsti and all her family and friends. Jo McKerchar – Isla’s Naming Day 12 August Joanne McKerchar thought a nice way to help raise awareness and funds for GBSS would be to ask for donations in lieu of gifts for her new baby daughter’s Naming Day. She had done this previously in 2010 when Isla’s older brother James had his special day too. Joanne said “Isla’s big day went very well and we managed to raise a small sum of money for GBSS. Everyone was very generous.” Isla’s lovely family and friends donated £198.72 to the charity. 19 Joanne Poskitt 100 mile walk July Jo was very keen on helping raise awareness and funds after her niece Cora was infected with late onset GBS. Jo set herself the challenge of walking 100 miles in 48 hours. The route she chose was from Temple Hirst to York Minster and back, twice along a safe cycle track. Jo set off on 7 July. She had plenty of walking buddies to join in at various points in the walk to keep her company. Unfortunately Jo didn’t manage to make the full 100 miles. After 16 hours and 54 miles her circulation became a big concern and the decision was made to call it a day. Jo said, “Although I was gutted I wasn’t going to risk my health.” The Labour Club charity gig for GBSS (a group that raises awareness of the dangers of GBS in pregnant women) – Bean had performed as part of his main band Hell Death Fury, a high energy and entertaining set of ska-punk, rock and metal mixes. Also on the bill was the ever reliable Jordan Whatley, playing for the first time after a long lay-off for flu’, and the hugely talented 15 year old Lauren Medway with a mix of covers and an original, amongst which Alicia Keys’ ‘New York’ and her own version of ‘Summertime’ were outstanding. The gig raised £120 for GBSS and future gigs will also add to this sum.” Mel has put on a few more gigs since then and at each has had the GBSS wristbands on sale at each event all which has helped put the total raised by Mel to £350.00. Well done Jo for all your efforts, you’ve raised a wonderful total of £1408.08. Nick and Angie Graff 10k walk/run 14 January Lindsay Birkett Fashion Show 15 June Nick and Angie organised their third annual 10k walk/run for family and friends along the seafont in their hometown of Eastbourne. Lindsay arranged another one of her amazing fashion shows in June they had the help of some fabulous models. Angie said “The run was another great success, We enjoyed doing this event and it gave us such a boost to know that we were doing something for Daisy and others.” Between the families involved £763 was raised for the charity. Gillian Cahill Glasgow Big Fun Run 14 July “I first became aware of the Big Fun Run last year when a link was posted on the GBSS Facebook page and it is something that I have wanted to take part in since then. Unfortunately I broke my ankle before last year’s event but there was no stopping me this year! GBSS is a charity very close to my heart because I was one of the lucky ones and was found to have GBS before my sons were born. I received antibiotics before my first son was born and my second son received antibiotics just after he was born. “I really enjoyed the Big Fun Run on Saturday – despite the route having a lot more hills than I expected! I finished in just under 40 minutes and was pleased with that (I joined a jogging group in January and although I am loving it, I still have a long way to go before I could be considered to be jogger!). The weather was very kind to us and it was dry for the duration of the run. “Our boys enjoyed the event and our 4 year old had a great time handing our GBSS stickers. My husband spoke to a lot of people and handed out the leaflets. He also spoke to someone whose wife was pregnant and if he reached just one person, he was so happy to have spoken to this man. He was completely unaware of what GBS was and he was going to speak to his wife about it and show her the leaflet. “My husband and I want to do all that we can to raise awareness of GBS and support GBSS. I am going to enter the Glasgow Big Fun Run again next year for GBSS and hope to make it a family entry!” Gillian and her family helped raise £135.00 which is wonderful. Jason Wright Ipswich Big Fun Run 21 October Jason signed up for the Ipswich Big Fun Run that was held at Christchurch Park. Jason gave the reasons for his taking part in the event; Jason said, “I am running the big 5K fun run on Sunday 21 October to raise money for Group B Strep Support, in memory of our little boy Callum who sadly passed away twelve years ago from a Strep B infection when he was just 11 days old.” Strep B infections in babies are still extremely common unfortunately as a lot of people are still unaware of its life threatening effects, as we were twelve years ago. L to R Catherine Painter; Laura Marsh; Suzanne Dack; Lindsay Birkett; and Stacey Allen Alongside the fashion show they held a raffle which helped take the total raised on the night to £797.00, amazing. One of the raffle prizes a handbag cake featuring the GBSS bee aware bee. Mel Austin Charity Music Gigs Melksham 28 January Mel Austin has done some great fundraising in the past for us. So combining his love of music and wanting to help the charity, Mel arranged a charity gig night in his local Labour Club in Melksham, Wiltshire. A local review from the night; “The previous Saturday had seen some of the same acts perform at Harry & Molly Graff who ran in memory of their sister Daisy. Sue & Alan Gough Signs for Rosie Sue & Alan lost their grand-daughter Rosie at four days old to GBS infection. Sue belongs to a sign language group that sign to wellknown music. Sue said, “This gave the idea of raising awareness through solo performances given to local clubs and homes for the elderly.” Alan introduces each performance with a brief description of importance of knowing about GBS and what the work of GBSS is trying to achieve. Signs For Rosie has been a great success and to date has raised over £600 for the charity. So big thanks to Sue and Alan for all their hard work. “Group B Strep Support is a fantastic charity who helped Clare and I and our families when we lost Callum, as they do for lots of other families too. They also help raise awareness which is vitally important to prevent the terrible consequences we faced as a family. We were lucky enough five years ago to have our second little boy Jack, who we are pleased to say had no effects of GBS due to the vital information we received from GBSS. Who knows. Without it things could have been a lot different.” Jason completed the run with Jack and Clare cheering him on. Jason raised £759.26 brilliant. Rachel Shaw Big Fun Run Newcastle 6 October Rachel took part in the Newcastle 5k Big Fun Run which was held around Newcastle Town Moor; her daughter Daisy contracted GBS infection at birth. She said “The thing that makes me most angry is if I had a small test to find out if I had GBS when I was pregnant, I could have had the antibiotics and Daisy would not have had to go through all of this from one day old. I am very lucky that my daughter is here now but she has suffers with after-effects to this day.” Rachel wanted to help more people be aware of GBS and how important it is to know that you’re a carrier. Rachel completed the 5k run and raised £47.82. 20 Isobel Chappel London Marathon April “Running the London marathon was the most amazing and insane experience of my life. It was sort of a spur-of-the-moment decision, as I’d never run long distance before, and thought as challenges go, its a pretty good one!” The training and fundraising for GBSS and the general build up was all good fun, but nothing could’ve prepared Isobel for the actual day. It was surreal! The crowds were amazing, everyone shouting your name and encouraging you, high-fiving the runners, and basically keeping us going... you might have noticed, 26.2 miles is a long way and takes some motivation! But the energy of the crowds and the runners was astounding and to be honest, although I managed to injure myself the week before the marathon and it was consequently quite a tough and painful race. I only have good memories of the day, it really was something I’ll never forget. “I’m just so pleased I was able to help Group B Strep Support and raise some awareness for them; I had a running top printed with the logo and name, and everyone I spoke to said what a great little charity it was to be promoting. I’m really pleased with how well my sponsorship page did as well, I wasn’t expecting to raise over £400! I would say to anyone looking to attempt the marathon that 1) you need a running buddy! My twin sister kept me going when both my knees wanted to stop! 2) just relax and enjoy it, as silly as that sounds and 3) if you can run it for a cause as worthwhile as GBSS then you’ve done well.” Isobel was amazing and in total raised a wonderful £533.20. Matt Hawkins Sky Dive 12 May Matt Hawkins very bravely signed up for a sky dive to help raise funds and awareness for GBSS. The Skydive was brilliant and highly recommend it to anyone who wants to do it. Matt said, “The day went very well and the instructors settled my nerves very well, it took 20 minutes to reach the jump height of 10,000ft and only 4 minutes to get back down to earth. The freefall was for 5,000ft which only took us 30 seconds as we were travelling at around 125mph. My cameraman was very close to us to get the best pictures – he was so close that we managed to high-five at around 7,000ft. Once our parachute opened all became very quiet and relaxed. I just hung taking in the view and reflecting on the reason I was doing this, at this point I got a little emotional but still smiling as I knew Bethany was with me and very proud. “We landed very comfortably and my adrenaline was running very high, I wanted to run straight back to the plane and do it all again. So maybe some more jumps in the future, think I have the bug for it now.” The Skydive was brilliant and highly recommend it to anyone who wants to do it. Matt raised and amazing £698.59 in memory of his daughter Bethany, well done Matt! Xafinity Paymaster Dress Down Day The lovely people at the Xafinity Paymaster office in Crawley all took part in a dress down day on 9th March, all the proceeds were to benefit GBSS they raised £186.50. Tony Page Walk to Work with Sheredes Senior School 29 February Tony Page was the caretaker at Sheredes Senior School in Hoddesdon, Hertfordshire. On 29th February he walked the eight miles to work from his home in Harlow. Tony left at 5:30 am arriving at work at 8.00 am. Tony’s son Ashton was seriously ill after birth with GBS infection but has thankfully made a full recovery. Tony and his partner Eloise had never heard of the infection and were shocked to find out that a simple test and treatment with antibiotics in labour could have prevented their family going through such a worrying time. Tony said “The walk took me about two and half hours and has inspired the school to want to do more for the charity. I want to do more for the charity as the satisfaction I got from raising money made me feel so good!! I would like to organise another walk but this time get the students involved and I am looking at doing 18 miles this time. Hoping to raise more and more for GBSS as it’s something I feel very strongly about.” John with Keira and Daniel John Boyce – London to Windsor Cycle 2 September John Boyce took part in the London to Windsor cycle race and chose the 75 mile route. John’s wife Jac said; “John completed the ride and we are very proud of him. The pictures show John at the finish line In one of the photos you will see 3 children. Our daughter, Kiera received antibiotics for the first few days of her life as I was found to be positive for Group B in a swab taken after the stillbirth of her sister 10 months earlier. Daniel was put on group B watch for the first 36 hours of his life. Both John and I are so grateful for the work of GBSS and will continue to help raise awareness.” Well done John for completing the challenge and raising £390.00 for GBSS. Tony and the school raised £306.00 for GBSS plus Tony really helped raising awareness through talking to his local media! Nick Robinson – Beardgrowing November Nick wanted to help raise funds for GBSS after his daughter Amelie contracted GBS when she was eight days old. Nick said “As high as 10% of babies who get GBS do not survive. We are so glad she is still with us. I am growing a perfectly formed ginger beard to celebrate! If we hit £1000, I will keep it on all December for my alternative Father Christmas look.”Nick managed to raise £1595.00 for GBSS, Fantastic! John at the finish line Neil Whiting Silverstone Half Marathon 11 March Neil took part in the Silverstone half marathon in March 2012 to help raise funds and awareness for GBSS. Neil was inspired to raise money for the charity after his good friends Pam and Lee Tomkins lost their first child James to GBS infection at twenty days old. Neil completed the race in the fantastic time of 1hour 50 and raised £325.00 in James’s Memory. 21 Joanna, Stuart and Joseph Littlewood Leeds Big Fun Run 12 August Joanna and her son Joseph once again took part in the Leeds Big Fun Run this time bringing along dad Stuart too. They all completed the race and had a great day raising £190.38 for GBSS. Toni Court Great North Run 16 September Jane Rawlings and family’s fundraising walk 18 August This is the second year Jane and her family have organised and took part in their fundraising walk they walked in memory of Jane’s grandson Harry who sadly passed away from a GBS infection at just three day’s old. Everyone who took Ready to go! part had a great time and they raised £369.53. Jane’s daughter Sarah told GBSS that they are going to make it an annual event, in memory of Harry. Toni completed the 13.1 miles in 2 hours 35 minutes and raised £317.00 for GBSS. Tara Haythornwaite Dance Show Bristol 8 February Tara contacted GBSS in December 2011 to tell the charity she was intending to arrange, and put on, a dance show at her school the Mangotsfield Secondary School in Bristol to help raise funds and awareness for Group B Strep Support. Tara said “The show went great! Everyone thoroughly enjoyed themselves.” Huge thanks to everyone who took part, the total raised by Tara and the school was £300.00. In November, Norton Radstock Ladies Circle members braved the cold weather to cater for the fireworks display in Midsomer Norton, organised by the local Roundtable. Mike Frost & The Bees on Ben Nevis August Toni said, “GBSS is mega important to me and my family after our gorgeous boy Tom was born with the illness in 2009. After that I really wanted to do something to fundraise for them and went from an exercise-phobe to Marathon runner in 2011! Unfortunately I gave up after that so the Great North Run got me back in the saddle and lacing up my runners again. “Race days are quite good fun but two hour long runs on your own on a Sunday in the rain are miserable so knowing some kind person out there will give me a fiver to help all the children out there who need it really helps me get out of bed and forgo a bacon butty, Thank you” Norton Radstock Ladies Circle Raising Money Group B Strep Support at Local Firework Display November Sally and Nicky cooking the Burgers Mike Frost, Billy Robertson, Lian Sissons, James Williamson, Liam Neville, Mike Steele, Jason Parker, Rich LeStrange, Phil Rodden, Simon Flannery, James Townsend, Dave Houghton, Joe Triccas, Rory Goddard & Ben Turvey Mike said, “Our swarm of Bees left Portsmouth Friday 3rd August at 4.30am, and after a 14 hour, 554 mile drive they finally arrived at the Chase the Goose Hostel in Fort William.” On Saturday 4th August 2012 at 9.30am they started their epic climb up all 4,409ft of Ben Nevis! All 15 of the Bees reached the summit together 4 hours 30 mins later, while raising £85 from other generous climbers & raising lots of awareness of GBS! Cooking over 200 sausages and burgers, there was a steady flow of customers looking for some hot food to warm them up. Emma Conneely, Chair of Ladies Circle said, “We had great fun on the night and worked well as a team and also managed to watch the fireworks – in between serving customers! It’s a fun way to raise money for a worthy cause and I am delighted to say we raised £200 on the night, We also held a Quiz Night and Fashion show taking the total raised for GBSS to £630.00.” The Bees spent about an hour on the summit enjoying the view, taking photos, getting naked (Joe Triccas for £20 donation!) and letting off balloons that apparently didn’t want to leave the mountain top! Everyone has said that although the climb was difficult especially in the heat (24 degrees in Scotland?!), it was an amazing experience and we have already started planning next years climb! Mike Frost said “Reaching the summit was a very proud and emotional moment for all of us. I blew our Ella a big kiss and told her I loved her. It is the highest point I can reach & the closest I will be to her for now.’ ” Lian Sissons said “I was at the back the whole time and I never thought I would make it up there! Luckily we all supported each other and every time I felt like I couldn’t go on, I would think of the heartache that this has caused Mike and Natalie, and my goddaughter Ella and I just refused to give up.’ ” They have currently raised over £4500 with more donations being added all the time! Huge thanks and well done to everyone who took part the final total raised was £5261.60. From left to right, Lorna , Alex, Emma and Lesley serving up front Nicolae Manolescu Virgin London Marathon April Nicolae contacted us after he secured his place in the 2012 Virgin London Marathon. He wanted to raise funds for the charity after his wife was told she was a GBS carrier after the birth of their daughter Megan. Megan spent some time in SCBU and was given antibiotics, thankfully she made a full recovery. Nicolae did an amazing run completing the marathon in 5 hours 21 minutes and raising £436.67 for the charity. 22 Katy Smith Brighton Half Marathon,The Great North Run & Birmingham Half Marathon “I ran the Brighton Half Marathon, the Great North Run and the Birmingham Half Marathon in 2012, raising over £500 for GBSS in memory of Layla Rose, the daughter of a dear friend. Layla picked up a Group B Strep infection before she came into the world and is now sleeping with the angels. “I felt proud to run the race wearing my GBSS vest hoping that if it saves at least one life by either the money donated or the awareness raised it made it all worthwhile. And when things got tough I thought of Layla and my friend, about how strong she was to go through such a horrible thing as losing a child and my temporary ‘pain’ seemed so insignificant!” GBSS were fantastic with the support that they provided and they were a pleasure to fundraise for! If anyone is thinking of raising money for them please do it!!! Michael Goddard Charity Football day 23 June Michael said, “I organised this event because it is a charity close to home. My nephew Teddy Goddard was born with a GBS infection and in the Intensive Care unit for the first 2 weeks of his life which was a very hard time for all the family.” Michael and his nephew Teddy The event was held at The New Park, Greenleys, Milton Keynes. “We had a charity football match between two works’ teams, Kuehne & Nagel v’s Echo the match ended 2-1 to Kuehne + Nagel which is their 5th charity match win in a row.” Also on the day there was a Tombola stall, a cake stall, guess the weight of the cake, a BBQ and a raffle. With all of these things at the event we managed to raise a great amount of money a total of £765.12 which is fantastic. “I couldn’t have done this event without the help of some of the following people, Zoe (fiancée) Linda (mum) Mick (dad) Ronnie (brother) Julie (mother in law) Angela (family friend) Dale (cousin) and of course the two football teams The Echo and Kuehne & Nagel.” After the Brighton Half marathon 2012 Lucy Hewes Pianothon Summer In the Summer, Lucy organised an event called the London Street Pianothon, where she raised funds by playing as many pianos as possible that were dotted around the streets of London whilst only walking or cycling (on Boris Bikes!) between them (Managed to play 31 out of 50 over 12 hours, covering around 15+ miles!) Members of Lucy’s Ascot, Caversham, Tilehurst and Henley Rock Choir sponsored her per piano which gave Lucy the incentive to keep going. She managed to raise over £1000. “I was originally raising the money for the Royal Brompton Hospital where I was rushed to as a baby and who looked after me for several weeks. It turned out that I had fluid on the lungs, pneumonia, and contracted Streptococcus from my birth. “After hearing the news of the Brompton surgery closing last year I did some research and came across GBSS, which is a charity that now means a lot to me. My Mum has always made me aware of being tested if I have children of my own one day, but so many expecting mothers do not even know anything about it, so it’s great that a charity like this exists.” Nicola Pilling Charity Concert Raffle & Auction 21 September Nicola said, “We chose GBSS because our daughter, Jessica, was diagnosed with GBS meningitis at one day old. It was the most terrifying experience of our lives and we are so lucky that Jessica came through it unscathed. We held a charity concert and auction at Stoke City’s Britannia Stadium and hopefully through our event and the publicity that it created we have managed to raise awareness of GBS as well as much needed funds. We believe that routine testing for GBS would help to prevent the unnecessary suffering of so many babies and their families.” The evening was a great success and £2000 was raised! Thank you to Nicola and all her family and friends. Kuehne + Nagel Football Team Echo Football Team Munns Farm Day Nursery, Charity of the Year Carolyn Middleton from Munns Farm Day Nursery in Hertfordshire called the office in early 2012 to let us know that the nursery had chosen GBSS to be their Charity of the year after one of their Mum’s had been affected and had a very difficult time. They arranged various events throughout the year including Leap for Leap Year where the children had a chance to leap into paint, ball pools and from crates they also held a summer fun day in September in total all the staff, children and families and friends raised a magnificent £2113.85 for GBSS. Paola Brennan Brighton Marathon 15 April Paola took part in her third consecutive Brighton marathon for GBSS in April Paola said “What an amazing day: perfect weather, great crowd! Felt strong all the way! Didn’t hit the WALL at all! Regular nutrition throughout with shot blocks and gels and only drunk when needed made the difference! I finished in 3:41 soooooo over the moon, so proud of my little legs and so happy I was wearing the GBSS vest!!! “Now, I’m enjoying a day off wearing my medal!!!” Paola raised £1025.90 for GBSS which is fantastic. 23 Royal Bank of Scotland – The Great South Run 28 October Liam Madigan who works for the RBS said, “The team at RBS Corporate Banking chose GBSS as our ‘2012 charity of the year’. GBSS is a charity very close to our hearts; three members of the team have personally benefitted from the great work which GBSS carry out. It was decided some 6 months ago that we would like to take on the 10 mile challenge of the Great South Run. Not only would this help get us in shape but would raise the profile of GBSS and raise sponsorship along the way. So the day arrived and some were more prepared than others! After waiting around in the bitter cold for what seemed like hours we eventually passed the start line. There were no dramas and we all surprisingly posted respectable times, much down to the adrenaline and buzz of the day. It was a great day all round in aid of a great cause. Now for the next challenge! “ The team did a wonderful job and raised £1890.69 for GBSS. Thanks to everyone who took part. The employees at RBS corporate banking in Chandlers Ford also held a charity Golf day on the 13 September. This alone raised just over £2500. On top of this the RBS run a community cash back award scheme where up to 10 members of staff can match the money they raised during the event, adding this to the total raised on the day it makes a whopping £5817.00. Left to right; Daryl Gayler, Dan Salanson, Alison Trant, Neil Foulkes, Julian Howard, Chris Shaw, Terry Koizou, Stephen Davison and Liam Madigan. Team Izzy Leicester Half Marathon 14 October Jackie Hill writes “On New Year’s Eve, our littlest princess, my granddaughter, Izzybella Joanna Pawley, fell asleep aged two weeks. Unbeknown to any of us, she had contracted a Group B Strep infection. Her heart-broken parents Kealy and Kyle will never fully understand why, or forget their most precious gift, and they wanted to raise awareness and give little Izzybella a voice in helping preventing this happening to other babies.” On 14th October Izzybella’s Dad Kyle and other members of her family, extended family and friends ran the Leicester half marathon. “ The achy muscles and joints have been worth it as so far Izzybella’s team altogether have raised over £1,400 including funds raised by our friend Laura Elson who on the 30th August put on a charity show. We are privileged to have had the chance to left to right is Martyn biddles, Kyle Pawley, give our littlest princess a voice and Jason Asher, Jackie Hill, Kirsty Hill and a meaning to her life. Nothing will Wesley Bugg. take away the pain of losing a baby but helping you spread the word and aiming to get routine checks compulsory means Izzybella didn’t die in vain and will live on in our hearts forever.” The final total raised by Jackie, Kyle, Kealy and their family and friends is £2,120. Amazing. Tom Ungi & the Dream Team take on the Paris Marathon 15 April Super fit RBS employee Antony White signed up to run the 2012 London marathon, he completed the race in a great time and raised £1959.36 for GBSS. Tom Ungi said “I’m running Paris for my daughter, Chloe Annabel Ungi, who was born asleep on the 13 April 2011. On the 3 May in Jarrow, Tyne & Wear we laid her to rest. This means the wonderful people at Royal Bank of Scotland Corporate Banking in Chandlers Ford have in total raised £9667.05 for us, their charity of the year for 2012. Looking forward to a day of Golf Lindsay Birkett receiving the cheque for the monies raised at the Golf day and the Great South Run Debbie Sinclair Corporate Manager from the company said “It has been a real pleasure raising money for GBSS and hopefully helping to raise the profile of this important charity locally. We hope that the money raised will make a big difference. We chose GBSS as our Charity of the Year to help support the tremendous efforts that our colleague Lindsay Birkett has made to raise money for the charity since the death of her first born – Rosie – by the infection shortly after her birth.” Chloe died of Group B Strep, which is a bacterium carried by a quarter of all women, and the UK is one of the few countries where women are not tested for GBS. A simple, cheap test would have saved her life. The charity aims at raising awareness and pressing the government and medical board to start testing for GBS, as well as obviously giving huge support to the families who lose a child.” Tom decided to run the Paris Marathon and was soon joined by some incredible people who trekked around the French Capital on the 15 April., including Ben Armstrong, Big Tommy, Little Tom, David Day, Stefan, James Woodley, James Lawless, Craig Johnstone, Lee Cordingley, Billy Dixon, Des Conway, Andy Hill, Andy Walton, Mark Dixon, Andrew West, Safraz Zavahir, Ed Atkins, Jonny Clemence, Richard Hough, Matty Thomas,Tony Atkins. Tom and his friends all completed the marathon and together they raised an astounding £28,066.53 Huge thanks to Tom and all his friends. Finished and emotional L to R: Tom Ungi, David Day, Andy Walton, Tommy Ungi Victoria Stubbs, Bupa London 10k 27 May Victoria said, “I did the Bupa London 10K at the end of May. Given how unfit I was at the end of March (and to be fair still am), the race went well even though the day was really hot. I did the race in one hour, twenty-five minutes, which wasn’t fast, but I finished it and in under ninety minutes, which was my goal.” It was a great race because it started and finished on The Mall and they were preparing for the Jubilee celebrations. “And I can now say I ran in a race with Mo Farah, the Olympic champion!.” hours in hospital we were told she was “shutting down.” But thanks to the amazing treatment from NHS Direct, the local ambulance service, A&E and the High Dependency Unit in the Royal Berkshire Hospital, she is fine. My little girl is now three and a half, she never stops talking or moving or bouncing or questioning or challenging. Victoria says she is really glad she ran for Group B Strep Support, “It was a lot easier raising money for something I believe in and have been personally affected by.” Victoria’s daughter was admitted to hospital with late onset Group B Strep when she was twenty one days old. “In some ways we were very lucky; it was in her lymph nodes, which swelled up and started to block her wind pipe, we noticed the funny breathing, rang NHS Direct, who rang for an ambulance straight away. “We were very lucky in a way that the symptoms caused something so obvious, and we could start treatment quickly. This meant there was no Meningitis. During the first twelve “It was important for me to support Group B Strep Support to help other parents avoid what we went through.” Vicky managed to raise £732.50 for the charity. 24 Kayla Henry Great Mini North Run 15 September Rachel Bowyer Virgin London Marathon 22 April Six year old Kayla Henry took part in the Great Mini North Run to help raise funds for GBSS. The course was 1.5km around Newcastle and Gateshead Quayside. Kayla’s older sister Ellie was born six weeks premature and at two weeks old as a result of GBS contracted neonatal Meningitis. Thankfully Ellie survived but is registered blind and has severe epilepsy and has cerebral palsy affecting all four limbs. Rachel contacted GBSS to see if there were any spaces for the London Marathon as she would like to run it to raise funds for the charity. It just so happened that 2012 was the year GBSS had been given a free charity place. “We were thrilled that Rachel was happy to take on the challenge.” Kayla’s mum Tracey said “Kayla wanted to do something to stop Ellie being poorly, I said we couldn’t do that, but this will help stop other people getting poorly” Kayla’s absolutely amazing she would do anything for her big sister, she’s like her other carer.” On the day of the race the weather was warm and sunny Rachel said “I had never heard of Group B Strep infection until it was too late for Dylan. Learning that GBS infections can be prevented was a tough one for me to find peace with. Training for this marathon helped channel some of those ‘dark demons’ into positive energy. “It was always a long standing ambition to run a marathon but never quite the courage or drive to do it. Losing Dylan changed that. “The short time we shared together was like beautiful, precious dream that faded. Gone but not forgotten. A part of my heart died with him that day... but he gave me strength and courage to see beyond the pain, hurt and anger and in time, helped me feel complete to follow my dreams again.” Kayla, Ellie and Sarah before the race Kayla and Ellie’s carer Sarah Preston who was running with Kayla as her accompanying adult took to the start line after a fun warm up. Nick Lewis Canal Walking Challenge 20 October “My Little girl Ava was born 9 weeks early, she is one of a twin. “At 3 weeks old she contracted Group B Strep Meningitis with severe septicaemia. We were told by Doctors to have her christened as she was going to die. “I’m very proud that we have raised to date £5492.02 for Group B Strep Support. It was an immense day on top of a long week of anticipation waiting. “It feels good to have achieved it. I completed the marathon in 4 hours 37 minutes – at times it was mentally really tough but I managed to get it back together and actually enjoyed the last 8 miles back down to the Mall. “It was an extraordinary and truly memorable experience – and thank you for honouring me with your place to run; it’s the least I feel I can do to help support the charity that has supported me and continues to work hard to raise awareness for Group B Strep Infection that lead to Dylan’s sudden and tragic death, and if one little life is saved through awareness, then Dylan’s death will not have been in vain.” “My little girl fought for her life and with the wonderful care of doctors and nurses at St Michaels Hospital in Bristol and Frenchay Hospital Bristol, she survived.” Ava has undergone numerous operations including having part of her intestine removed due to contracting NEC (a life threatening bowel condition) as well as numerous skin grafts due to the effects of septicaemia. She has had to have numerous operations on her legs to allow her to walk. Sunci Pedrosa Coffee morning 12 February All this before she was 2 years old. Ava is now a happy 3 year old who just gets on with life, she is naughty, cheeky, “But most of all she is my beautiful little girl.” On the 20th October, Nick set off to walk 87 miles along the Kennet and Avon canal from Reading to Bristol and then 16 miles along the Gloucester/Sharpness canal in four days to raise money for GBSS and the Meningitis Trust. Nick completed his challenge and raised a fantastic amount of money for both charities including £545.50 for GBSS. Sunci (centre with yellow tabard) and her friends. Sunci held her third annual coffee morning for GBSS, she invited lots of friends to come along enjoy the day. Sunci made sure that there was plenty of GBSS information leaflets available for her friends to pass to their friends and help with spreading the GBS word and raising awareness. Everyone had a great time and £50 was raised for the charity. Newsletter Contributions We like to include items from readers of our newsletter. Please mark any items you wish to be included in the newsletter ‘For Publication’ for the attention of The Editor, GBSS News at our office address. Please note that we reserve the right to make changes to the text submitted. The newsletter is sent to charity members, plus relevant medical organisations, other charities, media contacts and other selected individuals and organisations. Contact Us If you would like to get more involved with the charity’s activities, then the following are the people to contact in the first instance: Jane Plumb MBE, at jplumb@gbss.org.uk re medical and parliamentary issues Sarah Fiedosiuk, at sfiedosiuk@gbss.org.uk re media and awareness raising Marie Rothwell, at mrothwell@gbss.org.uk re fundraising and for information materials Celia Sykes, at csykes@gbss.org.uk re conferences and seminars, advertising and membership matters, including Standing Orders and Gift Aid Jane Grout, at jgrout@gbss.org.uk re accounting and trust fundraising 25 Baby Congratulations Oxley Fortescue, Natasha & Jack Bradshaw, Hayley & Scott A daughter, Ida, on 16 August 2011. A sister to Arthur who has recovered from the GBS infection he had at birth in September 2007. Mother and baby are fine. A son, George Arthur, on 9th September 2011. A brother to Alfie and Mollie. Alfie has recovered from the GBS infection he had just after birth in October 2006. Both Mollie & George were fine following Mum having antibiotics during labour. Edwards, Fran & Paul A daughter, Phoebe on 5 June 2012, a sister to Lois who suffered a GBS infection at birth but has thankfully recovered well. Fran was given antibiotics in labour and Mother and baby are doing fine. Charlesworth, Sophie & Reynolds, James Campbell, Sarah & Adam A daughter, Anaylece, on 23 July 2012. A sister to Jake and Owen. Jake died from GBS just 15 hours after his birth in April 2011. Mother and baby are fine. A son, Scott, on 25 January 2012. A brother to Lorna and Ewan. Ewan sadly died from GBS infection shortly after his birth in December 2008. Mother and baby are fine. Ilott, Sarah & Rob Plant, Jenny & Adam Duffy, Roseanne & Anthony A daughter, Ziva Caitlin Sue born on 4 January 2012. A sister to Zach and Lewis. Zach sadly died aged 10 days in January 2008 from GBS infection. Ziva is now a happy healthy one year old. A son, Ted, on 30 September 2012. A brother to Izzy who has fully recovered from her GBS infection after birth in December 2010, Mother and baby are fine. A daughter, Kara, on 1 April 2011. A sister to Katie Rose who has recovered from the GBS infection she developed shortly after birth in August 2007. Mother and baby are fine. McClafferty, Sinéad & Caoimhín Pawley, Kealy & Kyle Boyd, Jillian & Andy Milock, Emma & Dan A daughter, Ellen Mary-Kate, born on 14 September 2011. Welcomed home by her very excited brothers, Finn & Oisín, and sister Annie. Her oldest brother Finn, pictured holding Ellen on his knee, made a full recovery from the GBS infection he had after his birth in October 2006. A daughter Ellissiya Bella Faith on 28 December 2012, a sister to Izzybella, Kodey and Kaiden. Izzybella sadly died at 2 weeks old on 31st December 2011 from GBS infection. Mother and baby are doing fine. A daughter, Clara, on 14 August 2012. A sister to Erin who was stillborn from GBS infection in March 2011. Mother and baby are fine. A daughter, Annie on 7 February 2013. A sister to Isla and Gene. Isla sadly died aged 5 days as a result of GBS infection in December 2008 Mother and baby are fine. Robertson, Hazel and Coutts, Tommy A daughter, Rachel Amy, on 11 November 2012. A sister for Alice Heidi. Mum, who was identified as carrying GBS during her pregnancy, and baby are fine. We are always delighted to hear news of the safe arrival of babies, particularly when the risk of GBS infection is heightened. Our thanks to those families who are happy for us to share their lovely news. 26 Research Papers During 2012, many thousands of research papers were published. Quite a few were on group B Strep – below are some highlights. You can find more listed on our website at www.gbss.org.uk/research, including links to more information. UK Papers International Papers: Pyogenic and non-pyogenic streptococcal bacteraemia, England, Wales and Northern Ireland: 2011 Health Protection Report [serial online] 2012; 6(46): Bacteraemia This paper presents data on the reported incidence of Streptococcal infections, including group B Strep, in England, Wales and Northern Ireland in 2011. Please bear in mind that in most of the countries where the following research was carried out, antenatal screening for group B Strep using ‘gold standard’ methods is standard practice. Raising Awareness of Group B Strep. Hunt L. RCM Midwives. Aug 2012. This article outlines why it’s more important than ever to inform expectant mothers of the risks of group B Strep against the background of rising numbers of babies affected by group B Strep. Antenatal screening for group B streptococcus. Senior K. Lancet Infect Dis. 2012 Aug;12(8):589-90. This article highlights the support for antenatal screening for group B Streptococcus amongst a range of medical professionals. Feasibility of using microbiology diagnostic tests of moderate or high complexity at the point - of - care in a delivery suite. Gray JW, Milner PJ, Edwards EH, Daniels JP, Khan KS. J Obstet Gynaecol. 2012 Jul;32(5):458-60. Study which suggests that the implementation of more complex point of care testing is technically feasible, but it is expensive, and may be difficult to achieve in a busy delivery suite. Early onset group B streptococcus sepsis: guidelines review. Martin A,Vergnano S, Heath P, Anthony M, Kennea N, Watts T, Embleton N, Collinson A. Journal of Infection Prevention. May 2012 vol. 13 no. 3 75-78. Article which reviewed 14 units’ guidelines, finding substantial variation in recommendations within and between units on indications for antibiotics given in labour and treatment of babies without symptoms, and discrepancies between obstetric and neonatal guidelines, potentially increasing infants’ risk of infection. Streptococcus B in pregnancy: to screen or not to screen? GBSS Medical Panel. BMJ April 2012. A letter correcting false statements and misrepresentations which appeared in an article in the BMJ, Group B streptococcal disease in infants aged younger than 3 months: systematic review and metaanalysis. Karen M Edmond, Christina Kortsalioudaki, Susana Scott, Stephanie J Schrag, Anita K M Zaidi, Simon Cousens, Paul T Heath. 2012 Jan. The Lancet. Review article which aimed to examine the current global burden of invasive group B Strep disease and the distribution of group B strep serotypes. Intrapartum antibiotic prophylaxis for the prevention of perinatal group B streptococcal disease: Experience in the United States and implications for a potential group B streptococcal vaccine. Schrag SJ,Verani JR. Vaccine. 2012 Dec 3. pii: S0264-410X(12)01697-0. Study reporting that the effectiveness of intrapartum antibiotics in labour is similar and high among term (91%) and preterm (86%) infants when first line therapy is received for at least 4h. The authors state that the US experience demonstrates that universal screening and intrapartum antibiotics in labour for GBS-colonized women comprise a highly effective strategy against early-onset GBS infections. Maximizing adherence to recommended practices holds promise to further reduce the burden of early-onset GBS disease.Yet there are also inherent limitations to universal screening and IAP. Some of these could potentially be addressed by an efficacious maternal GBS vaccine Prevalence of Group B Streptococcus Colonization in Subsequent Pregnancies of Group B StreptococcusColonized versus Noncolonized Women. PageRamsey SM, Johnstone SK, Kim D, Ramsey PS. Am J Perinatol. 2012 Sep 21. Study finding the GBS colonization rate in the first pregnancy studied was 20%. Colonization rate in subsequent pregnancies for initially GBS-colonized women was 42% compared with 19% for women who were not colonized with GBS in the initial pregnancy. Improving perinatal Group B streptococcus screening with process indicators. Albouy-Llaty M, Nadeau C, Descombes E, Pierre F, Migeot V. J Eval Clin Pract. 2012 Aug;18(4):727-33. doi: 10.1111/j.13652753.2011.01658.x. Epub 2011 Mar 18. Group B streptococcus (GBS) neonatal infection can be prevented by screening pregnant women for GBS colonization from the 34th to the 38th week of gestation, as has been recommended in France since 2001. This article assessed guideline adherence among midwives and obstetricians. Long-term Outcomes of Group B Streptococcal Meningitis. Libster R, Edwards KM, Levent F, Edwards MS, Rench MA, Castagnini LA, Cooper T, Sparks RC, Baker CJ, Shah PE. Pediatrics. 2012 Jul;130(1):e8-e15. Group B Streptococcus (GBS) is the leading cause of meningitis in young infants. Survivors of GBS meningitis continue to have substantial long-term morbidity, highlighting the need for ongoing developmental follow-up and prevention strategies such as maternal immunization. Prevention of Neonatal Group B Streptococcal Infection. Spanish Recommendations. Update 2012. SEIMC/SEGO/SEN/SEQ/SEMFYC Consensus Document. Alós Cortés JI, Andreu Domingo A, Arribas Mir L, Cabero Roura L, de Cueto López M, López Sastre J, Melchor Marcos JC, Puertas Prieto A, de la Rosa Fraile M,Salcedo Abizanda S, Sánchez Luna M, Sanchez Pérez MJ, Torrejon Cardoso R. Enferm Infecc Microbiol Clin. 2012 Jun 1. Spain updates their 2003 guidelines for preventing GBS infection in newborn babies. They continue to recommend antenatal screening for all women. Bacteruria with group-B streptococcus: is it a risk factor for adverse pregnancy outcomes? Kessous R, Weintraub AY, Sergienko R, Lazer T, Press F, Wiznitzer A, Sheiner E. J Matern Fetal Neonatal Med. 2012 Apr 25. Study showing a significant association between GBS found in the urine during pregnancy and adverse obstetrical outcomes. In addition a linear association was found between GBS culture location and obstetric complications. Recolonization of group B Streptococcus (GBS) in women with prior GBS genital colonization in pregnancy. Tam T, Bilinski E, Lombard E. J Matern Fetal Neonatal Med. 2012 Apr 2. This suggests that women with a history of GBS colonization are at a significantly higher risk of GBS recolonization in subsequent pregnancies. Early onset neonatal sepsis: the burden of group B Streptococcal and E. coli disease continues. Stoll BJ, Hansen NI, Sánchez PJ, Faix RG, Poindexter BB, Van Meurs KP, Bizzarro MJ, Goldberg RN, Frantz ID 3rd, Hale EC, Shankaran S, Kennedy K, Carlo WA, Watterberg KL, Bell EF, Walsh MC, Schibler K, Laptook AR, Shane AL, Schrag SJ, Das A, Higgins RD; Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal Research Network. Pediatrics. 2011 May;127(5):817-26. Epub 2011 Apr 25. This paper finds that in the era of intrapartum chemoprophylaxis to reduce GBS, rates of early onset infection have declined but reflect a continued burden of disease. GBS remains the most frequent pathogen in term infants, and E coli the most significant pathogen in preterm infants. Missed opportunities for GBS prevention continue. Prevention of group B streptococcal neonatal disease revisited. The DEVANI European project. RodriguezGranger J, Alvargonzalez JC, Berardi A, Berner R, Kunze M, Hufnagel M, Melin P, Decheva A, Orefici G, Poyart C, Telford J, Efstratiou A, Killian M, Krizova P, Baldassarri L, Spellerberg B, Puertas A, Rosa-Fraile M. Eur J Clin Microbiol Infect Dis. 2012 Feb 8. This paper presents the current knowledge on the prevention of group B streptococcus (GBS) neonatal infections and the status of prevention policies in European countries and to present the DEVANI pan-European program, which was launched in 2008. It states that, “Most European countries have implemented policies to prevent GBS neonatal infections and the burden of the disease has decreased during the last several years. Nevertheless, further steps are necessary in order to develop new strategies of prevention, to improve microbiological techniques to detect GBS colonization and infection, and to coordinate the prevention policies in the EU.” Unfortunately the burden of GBS disease in the UK hasn’t fallen in the last few years, unlike other European countries – perhaps the fact that most of them offer screening and ‘gold standard’ testing and we don’t has something to do with it? 27 Christmas Cards, Gifts & Christmas Raffle 2012 Other generous donors included: • Graze • alphabetbags.com • Abel & Cole • The Spicery • Cocoaloco • higgidy.co.uk • gupuds.com • Johnsons Cleaners • Barrett & Coe Photography • Leon • London Premier walking tours • • • • • • • • • • • COOK Fun Pots Redspottedhanky.com Passion Savon Tesco Yorkshire Tea Ella’s Kitchen Bio Tech Johnson dry cleaning Passion Savon Delta force paintballing Our thanks to Anne Hughes and Olie Plumb who successfully secured so many of the prizes for us. Jane Plumb holding the gorgeous prize donated by Absolute Pearls Thank you to everyone who took part in our 2012 Christmas Raffle and a massive thank you to all the wonderful individuals and organisations who so generously provided prizes for this event. A special thank you to: • Tastecard for their discount card (worth over £70) • Absolute Pearls for the gorgeous white pearl necklace and earring gift set • Hall & Woodhouse for a £50 voucher Big thanks to all who bought Christmas cards and other items from our shop. We were thrilled and delighted that our new cards were so popular. They are a great way of not only raising funds for GBSS but also raising awareness among the people you send cards to. You’ll be pleased to know that we raised almost £10,000 from the 2012 Christmas Draw and our shop sales combined, which is fantastic. Special thanks go to our top raffle ticket sellers in 2012: • Jackie Scott • Jon & Caroline Constable • Ifeanyichukwu Okike • Sarah Ilott And a big thank to you supporter Deborah Hollywood who stocked our Christmas cards in her shop, The Mint House, in Hurstpierpoint, West Sussex in the run up to Christmas 2012 and sold loads. GBSS Shop In November we updated and upgraded our website and online shop. Do pay a visit: there is a new line of wedding favours which make a lovely addition to any formal table. You can also make a donation via the shop. Visit www.gbss.org.uk/onlineshop 28 How you can help – campaign with us health care professionals that come in contact with pregnant women need to be educated about GBS so that the information can be passed on to pregnant women so that they can make a choice whether they pay for the test.” We try to raise the issue of better awareness and prevention of group B Strep infection in newborn babies with MPs wherever possible. And to do this, we need your help! Our Objectives Group B Strep Support (GBSS) is a UK charity, founded in 1996. Our three main aims are to: • Offer information and support to families affected by GBS; You can raise the issue by meeting with your local MP or writing to them about it. Don’t be shy of contacting or meeting your MP. Go armed with a brief agenda of the things you want to cover. You can visit our website at www.gbss.org.uk/MP which tells you how to find out who your MP is and how to get in touch. Supporter Justine Baker met Deputy Prime Minister Nick Clegg when he went to Taunton “I asked him as a parent of 3 young boys whether he had ever heard of GBS. He hadn’t and was interested to hear about the infection. He was surprised how many newborn babies it affects and how many sadly die from the infection. It was good to make him aware of GBS and I told him we need to make sure that all Many supporters did contact their MPs during 2012, with some spectacular results. Lots of questions about group B Strep were asked by parliamentarians, many letters were written to the relevant ministers and EDMs were tabled. Early Day Motions Early Day Motions (EDMs) are formal motions submitted by MPs in the House of Commons and are one way in which backbench MPs can record their support for particular issues or campaigns. The most successful motions give rise to debates in Parliament, changes in Government policy and changes in law. In 2012 MPs Mark Durkan, Mike Hancock and Grahame Morris have each tabled EDMs – please ask your MP to sign all of these EDMs – you can find them on our website at www.gbss.org.uk/EDM . If you don’t know who your local MP is or how to contact them, visit www. findyourmp.parliament.uk/ or call the House of Commons information line on 020 7219 4272 E-Petition 2012 petition – 16,074 people added their voice to our petition, which called for every woman to be routinely given accurate information about group B Strep during her antenatal care; every low-risk woman to be offered a sensitive test for GBS, ideally at 35-37 weeks of pregnancy; and every higherrisk woman to be offered antibiotics in labour. The petition closed on 15 August 2012 and we are still awaiting a response from the Department of Health. If they do respond, we’ll share links to their response as soon as we can although their response should appear at www.epetitions.direct. gov.uk/petitions/4854. Our thanks go to the many supporters who signed the petition and shared it with friends, family and colleagues – thank you one and all. New petition – A new petition, ending on 31 December 2013 was created by Sarah Chapman, asking that women should be routinely offered testing for group B Strep in every pregnancy. Signing this petition is a significant way to show that the campaign for women to be informed about group B Strep and offered sensitive testing as a routine part of their antenatal care is gaining widespread support. Go online to sign it at www.epetitions.direct. gov.uk/petitions/43712 and please ask other to do so too. • Inform health professionals and individuals how most GBS infections in newborn babies can be prevented; • Generate continued support for research into preventing GBS infections. Preventing GBS infection in newborn babies PO Box 203, Haywards Heath, West Sussex RHI6 IGF Tel/answerphone: 01444 416176 E-mail: info@gbss.org.uk www.gbss.org.uk GBSS news is edited and published from the above address Regd charity No: 1112065 Regd in England No: 5587535