Irish Neonatal Health Alliance

Description

INHA’s vision is to support families affected by prematurity. This will be achieved by advocating increased awareness, improved pre-conceptual and ante-natal education, equitable and standardized neonatal care and improved long-term care for both the premature baby and the family.

Our objective, through consultation with global networks of prematurity groups, healthcare professionals, educators, 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.

Public involvement in research

Patient Advocate with Perinatal Ireland promoting excellence in clinical trials in pregnancy and in neonates. Addressing the national and global clinical needs for effective screening tests for the complications of pregnancy and the medical complications of neonates.

Patient Advocate with the Eyecare Services Review group offering service user feedback on existing services and contributing towards the new eyecare pathways being drafted.

Patient Collaborator with the INFANT Centre in Cork promoting excellence in clinical trials in pregnancy & in neonates. Addressing the global clinical need for effective screening tests for the most common complications of pregnancy & the most significant problems for newborn babies in intensive care.

PPI with the National Medicine Transport Program. The primary objective of the National Medicine Transport Programme (NMTP) is to establish a comprehensive Retrieval/Transfer system for seriously ill babies, children and adults throughout Ireland. It is about getting the right patient, to the right care, in the right condition, in the right time and involves the timely Retrieval/Transfer of critically ill or severely injured patients by an appropriately trained and skilled team of health professionals.

Patient Advocate on the MSc Post Grad Cert in Nursing/Midwifery (Advanced Neonatal Practice)

Contributor to the Patient Reference Group of the National Advocacy Unit of the Health Service Executive to ensure that the involvement of service users is central to how health care services are designed, delivered and evaluated,
to develop and support implementation of best practice models of customer care within the health service,
to support implementation of the “National Healthcare Charter, You and Your Health Service” which outlines what service users can expect and what their responsibilities are whenever and wherever they use health services,
to develop organisational capacity, to gather patient feedback and to use this information to improve services for service users,
to encourage service user involvement on patient forums,
to support the development of a national network of patient safety champions,
to support implementation of advocacy programmes in health care settings
to improve access to health services,
to promote clear communication between health care providers and patients following an adverse event in health services, and
mediation and facilitation for complaints handling.

PPI with the IMPREN-EW project in France, Working with HCPS from France, Spain, Germany and the UK on a research project where the key question of :
“Is there some evidence that organisational strategies, including empowerment of parents, could have a significant impact on the preterm infants’ outcome”.
will be addressed.

Parent Advisory Board Member with the European Foundation for the Care of Newborn Infants www.efcni.org

Parent Representative of the NIDCAP Federation International Board www.nidcap.org

PPI with 2 ongoing grant applications with Prof Gene Dempsey Cork Univ Maternity Hospital Cork seeking funding to implement a webcam system in the NICU to improve patient experience and with Dr. John Kelleher, Coombe Womens Hospital Dublin seeking funding to set up follow up care clinics for preterm infants in the community.