INHA Policy and Action – IRELAND
POSITIVE STEPS FOR PREMATURITY
In 2011 Ireland’s inaugural benchmarking report on prematurity was published. The report called “Positive Steps for Prematurity” was the result of the collaborative efforts of Healthcare Professionals working in the field of Neonatal Care in Ireland with contributions from our Director of Advocacy and Policy Making, Mandy Daly. The report mapped the landscape of prematurity in Ireland and 5 key recommendations were identified that would improve the care delivered to our preterm infants in Ireland.
These recommendations were:
- Develop and implement a targeted public policy on neonatal health, with the active engagement of healthcare 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 Neonatal Transport Programme to a 24 hr service to ensure adequate coverage and patient access to emergency and quality care as needed.
The report was included in the European Benchmarking Report “Too Little Too Late” published by the European Foundation for the Care of Newborn Infants (EFCNI).The report provides an overview on the impact of preterm birth across Europe and paints a compelling picture of the differences that exist in levels of care and the lack of national health strategies concerning maternal and newborn health.
NATIONAL NEONATAL TRANSPORT SERVICE
The National Neonatal Transport Service is a rapid response service for the transport and stabilization of premature/ill neonates who require transfer to a tertiary centre for intensive specialized care. The aim of the programme is to bring to the point of retrieval a level of care akin to that of a neonatal tertiary centre. The first patient was transported in March 2001 and the service operated from 9am to 5 pm Monday- Friday.
The Irish benchmarking report “Positive Steps for Prematurity” in 2011, recommended that the neonatal transport service be extended to a 24 hour service.
The Neonatal Clinical Lead, Prof. John Murphy, National Maternity Hospital, the Neonatal Nurse Clinical Lead, Hilda Wall, National Maternity Hospital and Patient Representative, Mandy Daly (INHA) appeared before the Joint Oireachtas Committee for Health and Children in November 2012 to seek additional government funding to support the extension to the service. A 10 minute short film was produced by Mandy Daly with the financial assistance of an industry partner to support the campaign.
In December 2013 the National Neonatal Transport Programme extended the service to operate 24 hours a day Monday to Friday. A patient information leaflet was published in conjunction with the launch of the service.
The following short film was made by the INHA for World Prematurity Day 2014 to highlight the need to expand the existing service to include a Retro-Transport Service.
You can download a patient information leaflet by CLICKING HERE or on the image above.
PATIENT COLLABORATOR WITH THE NATIONAL TRANSPORT MEDICINE PROGRAMME
In July 2013, the INHA were invited to join the National Transport Medicine Programme as patient collaborator.
The primary objective of the National Transport Medicine Programme (NTMP) 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.
The NTMP is funded by the HSE and brings together Critical Care, Anaesthesia, Emergency Medicine, Acute Medicine, Acute Surgery, Paediatrics, Obstetrics, Neonatology, Nursing and Midwifery, National Ambulance Service (NAS), Primary Care and Patients under a single programme structure. A Steering Committee is to be chaired by Dr Jeff Perring, Director of PICU, Sheffield Children’s Hospital. The Clinical Lead for the Transport Medicine Programme is Dr . The goal is to guide the development and implementation of a national Retrieval/Transfer system.
Retrieval involves a team travelling to the patient, stabilizing the patient and returning with them to the Hospital the team is based at, or other appropriate Hospital.
Transfer of a patient occurs from a referring to a receiving Hospital. Low acuity patients are transferred by NAS and by Private Ambulance services. Higher acuity patients are additionally accompanied by a Nurse, and when required a Physician, from the referring Hospital.
What is funded by the NTMP
National Neonatal Transport Programme (NNTP)
- Establishment of a 24/7 service from Dublin – COMPLETED
- Establishment of a Monday to Friday daytime service, congruent with the model of care for the National Paediatric Hospital
- Expansion of Mobile Intensive Care Ambulance Service (MICAS) to 8 to 8, 7 days per week to operate from Dublin.
- Establishment of an 8 to 8, 7 days per week service to operate from Cork and Galway.
- Establishment of Intermediate Care (IC) Ambulances in Drogheda, Sligo, Castlebar, Limerick, Tralee, Bantry and Waterford.
- Development of an Adult Transport Medicine Training Course.
What the National Transport Medicine Programme means for patients;
- Enhanced access to high level health care services for a wider proportion of the population.
- Safe Retrieval/Transfer of severely injured/critically ill patients for Critical Care and other specialist care in tertiary hospitals.
- Enhanced clinical outcomes for severely injured / critically ill patients due to earlier appropriate decision to transfer, stabilisation prior to transport and specialised care en route.
- Savings due to a reduction in Average Length of Stay (ALOS) for affected categories of patients across the Clinical Programmes.
- Optimising utilisation of resources within the national health service.
- Capital and regional based Retrieval teams/services will be an efficient and effective strategy for providing workforce support to regional and outlying hospitals.
The NTMP has now been superseded by the National Ambulance Service Critical Care and Retrieval Services (NAS-CCRS) – www.nasccrs.ie. This new entity embodies the National Neonatal Transport Programme NNTP, The Irish Paediatric Acute Transport Service IPATS and The Mobile Intensive Care Ambulance Service MICAS and the INHA continue in their role as patient collaboratro with NAS-CCRS.
PATIENT ADVOCATE WITH THE NEONATAL STRATEGIC GROUP MSc NURSING ADVANCED PRACTICE NEONATOLOGY
Since October 2011 we have had a representation on the Neonatal Strategic Group for the MSc Nursing Advanced Practice (Neonatology).
Following a proposal form the Neonatal division of the Department of Paediatrics in the RCSI, with the support of the Neonatal Subcommittee of the Faculty of Paediatrics of the Royal College of Physicians of Ireland to develop a programme in advanced practice for nurses working in the area of neonatology, this Masters in Nursing in advanced practice in Neonatology, the first of its kind in Ireland was developed by the Faculty of Nursing, RCSI in consultation with the strategy group set up for the programme. The Faculty of Nursing and Midwifery, RCSI were approached by a group comprising of consultant neonatologists and established advanced nurse practitioners in Neonatology to develop this programme. The Neonatology Strand is being delivered as part of the existing MSc Nursing /Midwifery (Advanced Practice) (Incorporating the Certificate in Nurse and Midwife Prescribing and Ionising Radiation X-Ray Module).
PREMATURE BIRTH AND MATERNITY BENEFIT
Following a 10 month lobbying campaign which began in 2016, the INHA submitted a petition with over 58,000 signatures and a comprehensive report to government in 2017 which led to a review of the existing legislation pertaining to maternity leave in Ireland. From October 2017 the period for which maternity benefit is paid was extended in cases where a baby is born prematurely. The extended period of benefit is equivalent to the duration between the actual date of birth of the premature baby and the date when the maternity leave was expected to commence (i.e. ordinarily two weeks before the expected date of birth). Click here to access the report
PATIENT REFERENCE GROUP MEMBER OF THE HSE NATIONAL ADVOCACY UNIT
In July 2013 the INHA were invited to join the Patient Reference Group of the HSE National Advocacy Unit.
The primary role of the National Advocacy Unit
- 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.
NEONATAL AND CHILDREN’S BRAIN CONSORTIUM OF IRELAND: NEURO-INFLAMMATION & NEURO-IMAGING WORKING GROUPS
In 2020 the NBCI Neuro-Imaging and Neuro-Inflammation Working Groups were set up to review existing practices in the area of neonatal encephalopathy and to develop national guidelines to support clinicians and improve outcomes for infants who suffer a brain injury prior to or at birth. The INHA were appointed patient collaborators on both working groups.
NATIONAL OFFICE FOR RESEARCH ETHICS COMMITTEE
The National Office For Research Ethics Committees is an important addition to the research environment in Ireland. The mission is to embed a robust, transparent and cohesive ethics review system that strengthens the national research infrastructure. The remit is to review the submission of ethics applications related to Clinical Trials of Investigational Medicinal Products (CTIMP). The INHA were appointed patient representatives to the NREC-B Committee by the Minister for Health, Stephen Donnelly in 2021.
NATIONAL PERINATAL EPIDEMIOLOGY CENTRE
The INHA was invited to participate as patient collaborator in the national audit of Very Low Birth Weight Infants which reviews data on the care of of extremely low birth weight and preterm infants from all 19 Irish maternity hospitals.
EUPATI NATIONAL PLATFORM
The EUPATI National Platform (ENP) is a sub-committee of the Irish Platform for Patient Organisations, Science and Industry IPPOSI and our board member, Mandy Daly, as a graduate of the IPPOSI Patient Education Programme sits on the ENP committee which represents the experience of patient collaborators and embedded patient researchers across a broad spectrum of medical conditions.
IPPOSI PATIENT EDUCATION PROGRAMME
The IPPOSI Patient Education Programme is designed to enable and empower patient’s and patient advocates to work effectively with Irish and EU level health research and technology partners, agencies and authorities. INHA Board Member, Mandy Daly, is a graduate of the 2018 student cohort. The INHA is a member of the IPPOSI Patient Education Programme “Education and Training Advisory Group” in addition to providing student mentoring for the 2021 cohort of programme students for the Clinical Trials and Regulatory Affairs Modules.
HRB-CRCI CLINICAL RESEARCH WORKING GROUP
The INHA has been a member of this working group since 2020. The mission of the CR-PPI-WG (https://www.hrb-crci.ie/ )is to facilitate cooperation and sharing within the member organisations with respect to PPI knowledge, resources, training and innovation, to ensure that:
- The leaders of clinical research in both academia and in industry become PPI champions in their organisations
- The voice of the public and patient is included in a meaningful way across the full research cycle of all clinical research conducted in Ireland
- Duplication is avoided and available resources are maximised
- Public and patient members of the WG have a strong influence over how the WG operates
PRIMARY EYECARE SERVICES STEERING GROUP
In 2014 the INHA joined the Primary Eye-care Services Steering Group who’s remit it is to review primary care ophthalmology services in Ireland. The objective of the Group is to review and update eye-care protocols, reduce waiting lists, improve access to services and reduce the incidence of inappropriate referrals.
The Primary Eyecare Services Steering Group report has been published and can be seen in full here: http://www.hse.ie/eng/services/publications/Primary/Eye-Services-Review-Group-Report.pdf
MODEL OF CARE FOR NEONATAL SERVICES IN IRELAND
Dr. John Murphy, National Neonatal Clinical Lead and Neonatologist at the National Maternity Hospital, Holles St, Dublin 2 launched the Model of Care for Neonatal Services in Ireland at the World Prematurity Day Medical Symposium hosted by the INHA in Dublin on November 13th 2015. The aim of the document is to describe the services that should be provided at each level of neonatal care nationally, to inform future service planning and developments and to eliminate duplication and fragmentation of services.
The INHA were delighted to have had the opportunity to contribute towards the content of this blueprint document which provided a vision for the future of neonatology in Ireland and described how this vision can be implemented.
PATIENT REFERENCE GROUP MEMBER FOR THE NEW CHILDRENS HOSPITAL
The INHA is a member of the Patient Reference Group for the New Children’s Hospital and engages with all relevant stakeholders to ensure that the new hospital meets the needs of all families and service users.
Advanced Paediatric Nurse Practitioner Critical Care Retrieval Steering Committee
In 2017, the INHA became a member of the Advanced Paediatric Nurse Practitioner Critical Care Retrieval Steering Committee, with reference to overseeing the development of the Advanced Nurse Practitioner Critical Care Retrieval Role for Paediatrics.
National Neonatal Therapeutic Hypothermia E-Register Development Working Group
SERVICE USERS GROUP DEPT OF NURSING & MIDWIFERY
The INHA is a member of the Patient Reference Group for the development of a new Nursing and Midwifery Education Program with the Dept. of Nursing and Midwifery, Trinity College Dublin.
THE NATIONAL CHILDRENS HEALTHCARE CHARTER 2013
The National Healthcare Charter, which is titled You and Your Health Service was developed with input from many interested parties including representation from the Irish Neonatal Health Alliance, patient advocacy groups and individual advocates.
It is part of a series of quality improvement initiatives designed to involve service users in influencing the quality of healthcare in Ireland.
YOU AND YOUR HEALTH SERVICE – WHAT IS IT?
You and Your Health Service is a Statement of Commitment by the HSE describing what service users can expect when using health services in Ireland, and what they can do to help Irish health services to deliver more effective and safe services. It is based on eight principles which underpin high quality, people-centered care. These principles have been identified through a review of national and international patient charters and through wide consultation with the Irish public.
It aims to inform and empower individuals, families and communities to actively look after their own health and to influence the quality of healthcare in Ireland.
YOU AND YOUR HEALTH SERVICE – WHAT DOES IT DO?
- It outlines supporting arrangements for a partnership of care between everyone involved in healthcare-patients/service users, families, carers and healthcare providers.
- It supports a healthcare culture that delivers health and social care services in a predictable, preventative, personal and participatory way.
- It recognizes that there are different roles and responsibilities for both service users and healthcare providers.
- It promotes the importance of service users as individuals with diverse needs and not just a medical condition to be treated.
- It applies to all public health and social care services, including community care services and acute hospital service.
BRINGING TO LIFE THE PATIENT EXPERIENCES IN PREMATURITY
In 2014, the “Bringing to Life The Patient Experiences in Prematurity” patient survey was conducted to highlight the gaps that continue to exist in the delivery of information and services to families affected by a preterm birth. The results of the survey were presented at the World Prematurity Day Event in November 2014.