Policy /Advocacy
Irish Premature Babies are involved in a number of areas in advocating for greater change in the area of preterm care for both babies and families.
1 The Charity is involved with fellow premature babies charities Bliss in the UK, Tiny Life in N. Ireland and the Social Science Research unit, in the University of London.
2 Ireland's Inaugural benchmarking report- Positive Steps in Prematurity.
3 White Paper presented with the EFCNI in Brussels " Call to action for Newborn Health.
4 The charity have completed a very comprehensive study of feeding options in the Neonatal Units around Ireland. The results of this will study will be published soon and recommendations will be issued, as well as details of practical help that the charity will provide.
(1)The charity are involved with numerous UK medical and charitable organisation who are dedicated to the care of premature babies and supporting families. Our charity is delighted to be asked to work on this project which looks at improving the quality of care and outcome of very preterm birth.
The Preterm Birth study “is part of a wider researchprogramme called Improving quality of care and outcome at very preterm birth.Social Research Science Unit at the Institute of London is working with theJames Lind Alliance to identify uncertainties in treatments and outcomes forpreterm birth and to prioritise them for future research.”
The purpose of the study:
“Promoting partnerships of clinicians and patients toindentify and prioritize important uncertainties relevant to preterm birth.”
Programme aims:
1. To improve the quality of care at preterm birth
2. To enhance family centred care
3. To improve outcome for infants and theirfamilies.
Programme objectives:
1. Indentify and prioritize treatment uncertainties
2. Develop strategies for providing initial care atthe bedside for preterm births.
3. Generate the information to enable the conductof a large trial comparing cord clamping and the initial care at the bedsidewith immediate clamping and the initial care are the side of the room for pretermbirths.
About James Lind Alliance
www.lindalliance.org
James Lind Alliance is a non profit making initiative,established in 2004. It brings patients/service users, clinicians and carerstogether to identify and prioritize unanswered questions. The informationgathered will help ensure that those who fund health research are aware of whatmatters to both patients and clinicians. Research suggests involving patientsin the prioritisation of research questions in this way is rare – therefore theinterests of the groups may be overlooked. While the pharmaceutical and medicaltechnology industries and academia play essential roles in developing newtreatments, their priorities and perspectives may differ from those of patientsand clinicians and research questions that matter to them may thus be neglected. Click on the following links to read more information.
-Post-workshop report for awareness meeting.pdf & Issue 2 Preterm Birth Newsletter.pdf
Link for Issue 3 Newsletter :
http://eppi.ioe.ac.uk/pretermbirth/pretermbirth/Blog/Files/3/8/Issue%203%20Preterm%20Birth%20Newsletter.pdf
Link for the steering group:
http://eppi.ioe.ac.uk/pretermbirth/pretermbirth/Blog/Files/3/7/Preterm%20birth%20Steering%20group%20meeting.pdf
(2)Irish Premature Babies was involved in Ireland's inaugural benchmarking report, the charity were also involved in presenting the EFCNI white paper on Maternal and Newborn Health and aftercare services at the European Parliament in November 2011. There are numerous areas pertaining to prematurity and the family that need addressing, our charity intends to play a leading role in making a difference to the life's of families who have premature babies both in Ireland and in Europe.
"Positive Steps in Prematurity"- Irelands inaugural benchmarking report on the burden of preterm birth on support services for premature babies in Ireland was launched at the Royal College of Physicians of Ireland, Kildare Street, Dublin 2 on Thursday 17 November 2011. The launch was attended by leading neonatology healthcare professionals and policy makers focused on discussing the provision of healthcare for premature babies born in Ireland. The establishment of a national neonatal health programme governing all aspects of neonatal health in Ireland is essential in the delivery of a cohesive, structured and uniform high standard of care. The charity were delighted to be the given the opportunity to participate in Ireland's first benchmarking report on prematurity. Please feel free to read the report below:
Irish Benchmarking Report published in conjunction with Irish Premature Babies 2011.
IRELAND
| Total live births/year |
76,021 in 2009 |
| Preterm births/year |
4,540 in 2009(6%) |
Estimated cost of
premature births |
€66,071 - €78,919/case of extremely low birth weight
€24,079 - €35,236/case of very low birth weight
€2362 - €19,466/case of low birth weight
|
| Key Polices |
|
| National Plan |
Active National Neonatal Sub-Committee |
| Guidelines |
Regional hospital guidelines, national guidelines
covering only some preterm neonatal problems |
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