Presentation to Oireachtas Health Committee

1. Prematurity in Ireland Presentation to Oireachtas Health Committee November 22, 2012

2. Introductions Dr John Murphy Mandy Daly Hilda Wall National Clinical Lead in Neonatology Consultant Neonatologist at the National Maternity Hospital & the Children’s Hospital Senior Lecturer in Neonatology, RCSI Family Liaison, Policy & Advocacy Manager, Irish Premature Babies Board member, NIDCAP Federation International Advocacy at national & EU level Department Manager, Neonatal Unit, National Maternity Hospital Neonatal nurse representative, HSE Paediatrics and Neonatology Working Group What informs this presentation Clinical experience International expertise Parents & supporters Visits to all 22 neonatal units in 2011 and 2012 Neonatal Sub Committee of the Faculty of Paediatrics, RCPI European Foundation for the Care of Newborn Infants March of Dimes NIDCAP Federation IPB support and advice to parents Global Alliance to Prevent Prematurity and Stillbirth

3. The Challenge 75000 Births Annually 4,800 Premature births 19 Neonatal Units 300 Neonatal Cots Your texthereFr

4. What is prematurity? Definitions Causes Scale A prematurity birth is defined as less than 37 weeks’ gestation Births are further categorised by weeks of gestation and birth weight The most vulnerable are those children born at less than 28 weeks – more than 3 months early – or with the lowest birth weights Understanding of the drivers of preterm birth and the most effective interventions to reduce preterm birth rates is poor Research and discovery is required 15 million babies are born too soon every year, with preterm birth the largest cause of neonatal death worldwide (1.1 million deaths) making it the second leading cause of deaths in children younger than 5 years

5. What is prematurity? • Rate is rising globally: • Ireland 7% • Europe 5% • US 12% • Pre-term distribution categories are: • 34-36 weeks: 60% • 32-33 weeks: 20% • 28-31 weeks: 15% • < 28 weeks: 5%

6. Neonatal services in Ireland – • 11,289 neonatal admissions • 19 Neonatal Units • 11 level 1 • 4 level 2 • 4 level 3 • 300 Neonatal Cots • 193 SCBU • 55 NICU • 52 HDU

8. Impact of current approaches We have achieved reductions on mortality rates across most birth weights. The smallest babies with a birth weight of less than 749 grams are a group where current approaches have had no positive impact on mortality rates. Perinatal Mortality Rates by birth weight (g) per 1,000 births Change, % -2% -38% -13% -36% -28% -22% -38% -20% -23% -9% +20%

9. Recommendations for next steps The 2011 European Foundation for the Care of Newborn Infants (EFCNI) report recognised the priorities for Ireland were to: • Develop and implement a targeted public policy on neonatal health, with the active engagement professionals and parents • Increase general awareness of prematurity (its health, social and economic implications • Develop and implement a National Prevention and Screening Programme for high risk pregnancies • Take active measures to improve neonatal workforce education and neonatal units staffing in order to meet international standards • Extend the current Neonatal Transport Programme to a 24h service to ensure adequate coverage and patient access to emergency and quality care as needed

10. Principles that inform guidelines As Clinical Lead for Neonatology, one of my roles is to develop national guidelines that address issues of levels of care. Principles that I consider important include: Equipoise: right baby, right place, right time All Irish units support are supportive of a Neonatal Networks system The best results are achieved where a unit treats at least 50 babies under 32 weeks; services in Ireland continue to develop around this model It requires that units have the appropriate skills and capacity for the babies they care for This is a combination of “bringing expertise to baby” and “bringing baby to expertise” The 24/7 neonatal transport service is key to advancing this model

11. Key steps in providing quality care To provide high quality neonatal care to all 75,000 babies born in Ireland annually, we require: • Effective screening, nutrition, immunisation programme for all healthy newborns • Provide high quality neonatal intensive care and surgical care for ill newborns • Seamless transfer from Level 1 to Level 2 through to Level 3 Neonatal Intensive Care • ‘Right baby, right place right time’ • To put an efficient retro-transfer programme in place Quality Access Cost • All babies should have equal, rapid access to neonatal intensive care and surgical treatment irrespective of geographical location. Eradicate ‘post code’ disadvantage • Reduction in unnecessary costs by prompt identification and timely treatment of remedial problems • Eradicate fragmentation and duplication of newborn specialist and intensive care services • Rationalisation of Neonatal Intensive Care • Re-engage the wider paediatric community-GPs, AMOs, Public Health Nurses to reduce the ‘drift’ to hospital care with minor problems

12. The neonatal transport service Neonatal Transport Service 9am to 5pm, 7 days Sets out within 45 minutes to any hospital for a sick infant. The team provides stabilisation advice and intensive care at the referring hospital, prior to, as well as during the transport to the relevant tertiary centre. The majority of infants are transported to Dublin hospitals but the NNTP will also transport neonates to regional neonatal/surgical intensive care units nationally. The team includes a skilled and experienced neonatal transport nurse and a neonatal medical registrar from one the three main Dublin maternity hospitals. The team travel in an ambulance which has been designed and equipped especially for neonatal retrievals and has a complete transport incubator system. Outside of these hours – 50% of the time – sub-regional and general hospitals have to depend on their own resources and the 8 regional neonatal centres have to arrange their own transport teams.

13. A 24/7 service is essential Current 24/7 service Impact • Specialist transport and early transfer can be a determining factor in a preterm baby’s survival, whilst also reducing the chances of lifelong disability and the financial impact to the State • At 400+ transports, the national service would be a world-class service • It would be a service every unit and hospital could rely on and be proud of • Support parents of premature babies in a time of enormous stress and worry Less than 100 Other transports 193 transports Neonatal Transport Service Neonatal Transport Service More than 400 transports 286 transports

14. The Paediatric Reference Group Established in 2011 for the Lead Programme To make children central to the design of the Programme To ensure that the needs of the special needs groups are highlighted To link the advocacy groups with the work of the Programme It represents a rethink about how Paediatric care will be developed into the future. It is about providing children and their families what they require rather what we think they need

15. Your questions