National charity launches campaign to save babies' lives "Why guess...when you can test?" Tuesday 28 July 2015 PDF Print "Most group B Strep infections in newborn babies can be prevented when we know which Mums are carrying the bacteria. National charity launches campaign to save babies’ lives – “Why guess … when you can test?” The “Why Guess?” campaign wants to stop health professionals having to guess whether a woman is carrying the potentially deadly group B Strep bacteria and start using the group B Strep-specific (ECM) test to detect carriage late in pregnancy. On average, every day a newborn baby develops group B Strep infection; each week a newborn baby dies in the UK from group B Strep infection; each fortnight a survivor is left with long-term disabilities – physical, mental, or both. Jane Plumb MBE, Chief Executive of Group B Strep Support says "Most group B Strep infections in newborn babies can be prevented when we know which Mums are carrying the bacteria. Yet few health professionals have access to the “gold standard” ECM test for group B Strep carriage. The only test available to them misses 40% of carriers.}}" This is just not good enough – in what other field of medicine would we accept such appalling test accuracy when a more accurate test is available?" The safe and simple ECM test for group B Strep carriage late in pregnancy – which costs the NHS less than £11 - means prevention measures can be taken based on fact, not guesswork.Why guess, when you can test?” Charlotte Heath, whose daughter Aimee is seriously disabled from her GBS infection, says “Had I been tested for GBS and found positive, I could have been offered antibiotics in labour and Aimee’s illness and disabilities would have been prevented. It would be absolutely amazing if every pregnant woman was offered a test as the costs of a disabled child, or even losing a child, far outweigh the cost of a test. It is just mad how they haven’t brought it in here. Other countries do it, why doesn’t ours? Why guess when you can test?” Aimee’s Story On 23 July 2011, Charlotte Heath gave birth to her beautiful daughter Aimee. All appeared well until the next morning when Aimee showed signs of distress – high-pitched crying, struggling to feed and jaundice. Aimee was allowed to go home. Aimee’s condition worsened. By the fourth day, she was limp and lifeless in her mother’s arms. She was rushed to hospital where she was whisked off for blood tests and a lumbar puncture. Aimee had developed group B Strep meningitis – she was an extremely poorly baby. After three weeks of intensive care, Aimee was finally allowed home again. Aimee has spastic quadriplegia cerebral palsy following her group B Strep meningitis. She can’t stand, walk, talk or sit up. She can only be fed through a tube and can do little for herself. Aimee remains under the care of 14 health professionals – including paediatricians, physios, and a visual impairment team. She will continue to do so for years to come. Watch Aimee’s video here Nearly 200,000 people have signed a petition calling for the NHS to inform pregnant women about group B Strep and offer them the GBS-specific ECM test. It’s time for change. For more information about the "Why Guess when you can test?" campaign, click here The "Why guess when you can test?" campaign has already attracted support from TV doctors, Dr Chris Steele MBE and Dr Pixie McKenna, UK and International rugby league player James Roby, Sir Nicholas Soames MP and medical negligence experts at national law firm Irwin Mitchell. END For comment Jane Plumb MBE, Chief Executive, Group B Strep Support Tel: 01444 416176 (mobile 07986 745387- not for publication) e-mail: firstname.lastname@example.org For media enquiries, further information or to contact Charlotte Heath: Sarah Fiedosiuk, Media and Awareness, Group B Strep Support Tel: 01444 416176 (mobile 07984 649898 not for publication) email: email@example.com For information on group B Strep, please visit Editors Notes: • Group B Strep is the most common cause of life-threatening infection in newborn babies and of meningitis in babies up to the age of 3 months, passing from mother to baby around labour and birth. • 20-30% of women carry group B Strep, without symptoms and usually without harm. • Most group B Strep infections in newborn babies can be prevented by offering intravenous antibiotics (usually penicillin) from the start of labour to pregnant women who carry group B Strep. This can reduce these infections in newborn babies by 80-90%. • One in 10 babies sick with group B Strep infection dies, one in 20 of the survivors suffers long-term problems and five in 10 survivors of group B Strep meningitis suffer long-term mental and physical problems, from mild to severe learning disabilities, loss of sight, loss of hearing and lung damage. • Sensitive test not available - The cost to the NHS of the 'gold standard’ ECM (enriched culture medium) test is £11 per test. Few NHS trusts offer the ECM test, despite there being a UK standard for the test since 2006 (updated June 2015). Home-testing packs are available from a number of private laboratories for around £35. • UK guidelines currently don't recommend routine testing of all pregnant women and the UK National Screening Committee is due to review their policy in 2015/6. • The UK’s group B Strep risk-based prevention strategy – in place since 2003 - has failed. The rate has not fallen and, by 2013, the actual number of newborn babies with group B Strep infection had risen by 21%. The guidelines had been expected to reduce the incidence by 50-60%. • The mother carrying group B Strep around delivery is THE key risk factor for group B Strep infection in babies. Countries that routinely screen pregnant women for group B Strep have seen falls in the rate of these infections in newborn babies by up to 86%. • In February 2014, Northwick Park Hospital in North West London started offering group B Strep screening to all pregnant women. Results are yet to be published, but initial reports show that the screening programme is effective at preventing group B Strep infection in newborn babies, works in a busy UK setting and is popular with staff and mums alike. • Group B Strep Support, founded in 1996, is the UK’s only independent charity dedicated to preventing preventable group B Strep infections in newborn babies and to helping families make informed decisions about group B Strep. This press release was distributed by ResponseSource Press Release Wire on behalf of Group B Strep Support in the following categories: Health, Women's Interest & Beauty, Medical & Pharmaceutical, for more information visit http://pressreleasewire.responsesource.com/about.