Presentation to Oireachtas Health CommitteeNovember 22, 2012

Prematurity in Ireland

IntroductionsDr 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

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Clinical experience International expertise Parents & supporters

Visits to all 22 neonatal units in 2011 and 2012Neonatal Sub Committee of the Faculty of Paediatrics, RCPI

European Foundation for the Care of Newborn Infants March of DimesNIDCAP Federation

IPB support and advice to parentsGlobal Alliance to Prevent Prematurity and Stillbirth

What informs this presentation

75000 Births Annually4,800 Premature births19 Neonatal Units300 Neonatal Cots

The Challenge

What is prematurity?Definitions

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

Causes

Understanding of the drivers of preterm birth and the most effective interventions to reduce preterm birth rates is poor

Research and discovery is required

Scale

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 childrenyounger than 5 years

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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%

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Neonatal services in Ireland –

19 Neonatal Units 11 level 1 4 level 2 4 level 3

300 Neonatal Cots 193 SCBU 55 NICU 52 HDU

11,289 neonatal admissions

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List and Date of Neonatal Unit Visits Hospital Date Kilkenny 14/9/11 Waterford 26/10/11 Mullingar 11/11/11 Portlaoise 2/12/11 Limerick 25/1/12 Cavan 15/2/12 Drogheda 24/2/12 Clonmel 14/3/12 Wexford 31/3/12 Crumlin ICU 5/4/12 Letterkenny 12/4/12 Portiuncla 19/4/12 Galway 25/4/12 Sligo 6/6/12 Tralee 6/6/12 Cork 15/6/12 Rotunda 27/6/12 Coombe 28/6/12 Castlebar 28/6/12 Holles St 1/7/12 South East 25/7/12 Temple St ICU Aug ‘12

Impact of current approachesWe 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

-2%

-38%

-13%

-36%

-28%

-22%

-38%

-20%

-23%

-9%

+20%

Change, %

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Recommendations for next stepsThe 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

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Principles that inform guidelinesAs 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 model10

Key steps in providing quality careTo provide high quality neonatal care to all 75,000 babies born in Ireland annually, we require:

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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

All babies should have equal, rapid access to neonatal intensive care and surgical treatment irrespective of geographical location. Eradicate ‘post code’ disadvantage

Access

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

Cost

The neonatal transport serviceNeonatal Transport Service9am 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. 12

A 24/7 service is essential

Neonatal Transport Service

286 transports

Other transports

193 transports

Current 24/7 service

Neonatal Transport Service

More than 400 transports

Less than 100

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

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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

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Your questions