Irish Neonatal Health Alliance
November 13, 2018
Outline the vision and mission of the Organisation
Over 4500 babies are born too small, too soon and too sick in Ireland each year. INHA’s vision is to support and empower families affected by prematurity by advocating increased awareness, improved pre-conceptual, ante-natal and post natal education, equitable and standardized neonatal care and improved long-term care for both the premature baby and the family.
Their objective, through consultation with global networks of prematurity groups, healthcare professionals, educators, researchers, political decision makers and industry stakeholders is to foster the exchange of information, provide education to healthcare professionals and families and with one collective voice, to provide the platform for a coordinated and integrated program of collaborative support in the field of neonatal care in Ireland.
How has the Organisation developed and tackled issues?
Founded by parents affected by premature birth, the original reasons for founding the organisation was to offer support to families but it quickly became apparent that the neonatal landscape required far more and the INHA created the first ever multi-disciplinary collaborative platform for ALL stakeholders in the Neonatal Field to work together and make a real difference for babies born preterm, their families and the healthcare professionals working in the field. The five pillars that comprise the organisation today include Support, Advocacy, Education, Fundraising and Research. The were co-authors on Ireland's first Neonatal Benchmarking Report, extended the Neonatal Transport Service from a 9-5 service to 24 hours, contributed towards the Model of Care For Neonatal Services in Ireland, won the EFCNI Best Premature Baby Parent Organisation award in 2017, successfully lobbied to get the law on Maternity Leave changed in 2017, will be launching Europes First ever Standards of Care For Newborn Health in the EU Parliament in November, have representation on several HSE Steering groups ie the National Medicines Transport Program, the Therapeutic Hypothermia Register Steering Group, the Primary Eyecare Review Group and provide guest lectures to 3rd level students entering the Neonatal Field. They coordinate community projects to increase awareness about preterm birth ie the Angel Gowns project which sees them convert donated wedding dresses into burial gowns for babies who pass away in the Neonatal Intensive Care Units. The annual World Prematurity Day Medical Symposium attracts international speakers who bring best neonatal practice to Ireland. They work with corporates to secure funding for equipment for the hospitals and are patient collaborators on several national and international research projects (see the linked in page for details)
What has the overall impact of the work been?
Awareness about preterm birth has greatly increased thanks to the annual World Prematurity Day media campaign that the charity embarks upon each year. Education for families about preterm birth has greatly increased thanks to a comprehensive website, fb page medical symposia and education workshops for both families and healthcare professionals. The charity has provided Ireland's first multi-disciplinary platform for all stakeholders in the neonatal space to work together with a common goal. The international network of the charity (with their representation in Europe and the USA) has resulted in greater dissemination of best practice to Irish NICUs. The charity has worked directly with the Irish NICUs to provide a more family friendly environment and has greatly impacted the outcomes for preterm infants and reduced the trauma and long term mental health consequences for families.
What makes this Organisation unique?
The organisation is the first to offer a multi-disciplinary collaborative platform to all the stakeholders in the neonatal space to work together towards a common goal. It is a 100% voluntary charity with international networks reaching as far as Australia and is the ONLY Irish representation on the European Standards of Care For Newborn Health project which will see Europes first ever standards of care for newborns launched at the EU parliament in Nov 2018. The remit of the charity has penetrated every aspect of the neonatal space from ante-natal care right through to follow-up care post discharge. Support for the members continues right up into adulthood.
How can the public support this work?
The 100% voluntary nature of the charity and the large workload is challenging for the members. The charity leverages the digital world as best it can and always welcomes new innovative members to share the workload. Because much of the advocacy work involves collaborating with healthcare professionals , industry partners and researchers,who work 9-5, it can be difficult to find volunteers with the time and sufficient experience to fill this demanding role (currently filled by one person volunteering FULLTIME) . Raising funds is always a challenge for a small charity. It can be difficult to compete with the bigger better known charities especially when applying for charity partner awards or grants. Greater awareness about the charities work would help us raise the charities profile as the have been very successful within the national and international neonatal space in this regard.
How is the Organisation transparent and accountable?
The charity is a registered charity under Section 39 of The Charities Act 2009 RCN20100100 CHY21984, all the accounts are up to date as can be confirmed with the CRO, accounts are available on the website www.inha.ie. The Annual Report is currently in production and will be soon published on the website.