Policy & Action
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.
EUROPEAN BENCHMARKING REPORT
The Irish Benchmarking Report, “Positive Steps for Prematurity” was included in the European Benchmarking Report published by The European Foundation for the Care of Newborn Infants . The report gives 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.
CALL TO ACTION FOR NEWBORN HEALTH
In 2011/2012 our Director of Advocacy and Policy Making, Mandy Daly, contributed towards The European Foundation for the Care of Newborn Infants Call to Action for Newborn Health which contained10 demands by parents and health professionals to ensure that every baby born in Europe gets the best start in life. The Call To Action for Newborn Health was launched alongside the EU White Paper on Maternal and Newborn Health and Aftercare, “Caring for Tomorrow”.
Europe faces a major challenge in relation to maternal and new-born health with noticeable disparities across the EU. This is compounded in the case of vulnerable groups e.g preterm infants, who require specialist intensive care and attention that is not always provided.
The EFCNI-WHO event, organised in association with the Irish Presidency of the Council of the EU, comes further to a WHO Report from May 2012 that identified that preterm birth is the second leading cause of death globally for children under five. With the rate of preterm birth growing in most countries, the participants, including Mandy Daly from the Irish Neonatal Health Alliance, called for more work to be done to fight health complications and morbidities. Supported by EFCNI and WHO partners, participants called for maternal and new-born health to become a public health policy priority for all European governments.
Some of the solutions discussed include the need to focus on healthy pregnancies, effective maternal care and prevention of preterm birth. Experts agreed that Caring for Tomorrow: EFCNI White Paper on Maternal and Newborn Health and Aftercare Services provides a solid foundation for identifying recommendations on how European health systems could improve. Emphasis was placed on the need to develop European high quality standards for prevention, treatment and long-term care, the support of greater research, education and exchange, as well as streamlined and targeted information for parents.
The event, organised in association with the Irish Presidency of the Council of the EU (who had been invited to support the event by Mandy Daly, INHA) and in close collaboration with EFCNI’s national partners and European healthcare societies, was the first step towards developing standards of care for maternal and new-born health. Indeed, this meeting marked the establishment of an EU-wide network of stakeholders and parent representatives, led by EFCNI to create a way to benchmark existing care practices across Europe and establish recognised standards for delivering high quality care.
The event featured globally recognised experts in maternal and new-born health as speakers, including Prof. Dr. Kypros H. Nicolaides, Director of The Fetal Medicine Foundation; Prof. Dr. Dietmar Schlembach, faculty member of the Friedrich Schiller University of Jena (Germany), Dept. of Obstetrics and Gynecology and Head of the Division of Prenatal Diagnosis & Fetal Physiology; Prof Dr. Luc Zimmermann, President of the European Society for Paediatric Research and Mandy Daly, patient representative from Ireland.
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.
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.
Currently the INHA are working with the relevant stakeholders to implement a Retro-Transport Service which will see infants repatriated back to a hospital close to where their family live following treatment at a tertiary unit.
The following short film was made by the INHA for World Prematurity Day 2014 to highlight the need for the Retro-Transport Service.
You can download a patient information leaflet by CLICKING HERE or on the image above.
SOCKS FOR LIFE
Our European partner, The European Foundation for the Care of Newborn Infants (EFCNI) launched the activity SOCKS FOR LIFE to raise awareness for maternal and newborn health and to improve the care for preterm babies and their families.
On Monday, 7 April 2014, more than 100 guests from different professions and countries, Members of the European Parliament and representatives of other European Institutions, including the Irish Neonatal Health Alliance came together to celebrate the opening of the art exhibition SOCKS FOR LIFE. For the first time ever, art lovers, patients, politicians and health professionals from all over Europe came together to raise awareness for maternal and newborn health and in particular the challenges of preterm birth.
The event opened with Claudia Gahrke’s reading of the beautiful poem by Durs Grünwein. Following the warm welcome by host and patron of the exhibition, MEP Dr. Peter Liese and his colleague and EFCNI patron MEP Dr. Angelika Niebler, the guests listened to insightful speeches by Mr Rainer Wieland, Vice President of the European Parliament, Prof. Dr. Luc Zimmermann, President of European Paediatric Research Society (ESPR), Eleni Vavouraki, President of the Greek parent association Ilitominon and Silke Mader, Chairwoman of EFCNI.
Art has the power to bring people together. And it is together that we have the power to make a difference and improve the situation of preterm infants and their families. The exhibition opening translated this symbolic key message of the evening and core of the initiative SOCKS FOR LIFE into concrete action:
Children, former preterm babies (including Amelia McDermott Age 7 who represented the Irish Neonatal Health Alliance) and the true “little heroes” of the evening handed over the nearly 15,000 votes received for the European Call to Action for Newborn Health to the Vice President of the European Parliament Rainer Wieland.
Echoing this call for improvements by European citizens, stakeholders present officially declared to collaboratively work on European-wide Standards of Care for Newborn Health. The need for harmonised standards and their development in a collaborative approach have been endorsed by many healthcare societies and parent organisations. All of them have visualized their support with their logo at the event and visitors of the exhibition could equally show their support through their signature.
STANDARDS OF CARE FOR NEWBORN HEALTH
This collaborative project under the auspices of EFCNI brings together health experts, professional societies, civil society organisations, representatives of national parent organisations (including Mandy Daly from the INHA), third party advisors and industry partners to develop harmonised standards for the care of preterm and newborn infants in Europe. The standards will cover all topics from care at birth, neonatal intensive care as well as follow up and continuing care to ethical questions, education of neonatal health professionals, data collection and documentation. To this end, interdisciplinary Topic Expert Groups will be dedicated to one topic of newborn health. The standards will run through an extensive consultation process before being publically available online. Providing a set of expert-developed standards for newborn health will be an important step towards improving the quality of preterm and newborn care in Europe.
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.
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).
EFCNI PARENT ADVISORY BOARD
In January 2012 a representative from the INHA was elected to the Parent Advisory Board of the European Foundation for the Care of Newborn Infants (EFCNI). The board which consists of 8 individuals from across Europe supports and advises the board of EFCNI and acts as an conduit for the channeling of information from parent associations to the EFCNI board and vice-versa.
To learn more about the work of the European Foundation for the Care of Newborn Infants please visit their website: www.efcni.org
PATIENT ADVOCATE WITH THE NATIONAL TRANSPORT MEDICINE PROGRAMME
In July 2013, the INHA were invited to join the National Transport Medicine Programme.
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.
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.
BOARD MEMBER OF THE NIDCAP (Newborn Individualised Developmental Care and Assessment Programme) FEDERATION INTERNATIONAL
In September 2012, the INHA was elected to the board of the NIDCAP Federation International.
The NIDCAP Federation International (NFI) promotes the Newborn Individualized Developmental Care and Assessment Program (NIDCAP). NIDCAP is the most comprehensive, evidence-based model of developmentally supportive care and assessment for preterm and full-term newborns and their families in the hospital, and the transition home.
The NFI aspires for all newborns and families to receive hospital care and assessment in the relationship based, family integrated NIDCAP model.
The NFI assures the quality of NIDCAP education, training and certification for professionals and hospital systems, and advances the philosophy and science of such care.
Challenge and Opportunity
The incidence of preterm birth, worldwide, is rapidly increasing. In Ireland, the incidence of prematurity currently stands at 4500 per annum. Over 25% of all preterm infants are also born too small for their gestational age. These infants present immediate and significant challenges to their parents and to their caregivers in Newborn Intensive Care Units. They are hypersensitive, difficult to feed, and difficult to calm. More than 50% will go on to develop learning and emotional disabilities, requiring special education and mental health services. The challenge is even greater in developing countries.
Research has documented the beneficial effect of NIDCAP in terms of shorter intensive care and overall hospital stay, better weight gain and improved behavioral outcomes that endure beyond infancy. Studies have also documented that the NIDCAP approach enhances brain structure and function when measured by sophisticated medical techniques such as EEG and MRI.
What is the Newborn Individualized Developmental Care and Assessment Program (NIDCAP)?
Newborn Individualized Developmental Care and Assessment Program (NIDCAP), developed by Heidelise Als, PhD and her colleagues, is a comprehensive approach to care that is developmentally supportive and individualized to the infant’s goals and level of stability. Further it seeks to support families and the professionals who care for them. It provides and trains professionals within this NIDCAP framework.
One component of the model of care is the direct observation of the infants within their environments in the newborn intensive care setting. Using a detailed observational tool, often referred to as the NIDCAP observation, the infant’s behaviors can be interpreted as steady and relaxed or as representing stress or discomfort. By observing and then interpreting behaviors of infants within their environment and as reactions to care they receive, developmental care plans can be developed, with the caregiving team, that best support’s the infant’s overall goals and efforts at self regulation.
The NIDCAP model, which includes this observation, describes the development of an ever-more supportive and developmentally appropriate nursery environment (from the actual physical space to the delivery of care), and interrelated, the increasing nurturance of the family and the staff, and the continued education and mutual collaboration of the staff (from the direct caregivers through the administrative leadership).
The NIDCAP approach to care requires in-depth training and provides in turn a highly valuable resource in support of developmental support and care provision by professionals and families.
Who may be assessed with the NIDCAP?
Preterm and full-term newborns in the newborn intensive care setting are appropriate for NIDCAP assessment. Infants are typically observed in their bed spaces within the nursery before, during, and after caregiving experiences.
To learn more about the NIDCAP Federation International please visit their website: www.nidcap.org
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 is to review and update eye-care protocols, reduce waiting lists, improve access to services and reduce the incidence of inappropriate referrals.
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.
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.
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 is delighted to have had the opportunity to contribute towards the content of this blueprint document which provides a vision for the future of neonatology in Ireland and describes how this vision can be implemented.
COS-STAR- CORE OUTCOME SET STANDARDS FOR REPORTING
In July 2015, the INHA participated in a Delphi study as patient representatives to develop a reporting guideline for studies developing core outcome sets.
The study was conducted by Dr. Jamie Kirkham Senior Lecturer from the University of Liverpool, Professor Doug Altman (University of Oxford), Professor Jayne Blazeby (University of Bristol), Professor Mike Clarke (Queen’s University, Belfast), Professor Declan Devane (National University of Ireland, Galway) and Professor Paula Williamson (University of Liverpool). Core outcome sets (COS) can increase the efficiency and value of research and as a result there are an increasing number of studies looking to develop COS (http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0099111).
This study is ongoing and the results will be posted once available.
EUROPEAN MEDICINES AGENCY
In November 2015 the INHA were appointed Patient Representatives for the European Medicines Agency (EMA).
The Agency is responsible for the scientific evaluation of applications for European Union (EU) marketing authorisations for human and veterinary medicines under the centralised procedure. Under the centralised procedure, pharmaceutical companies submit a single marketing-authorisation application to the EMA. Once granted by the European Commission, a centralised marketing authorisation is valid in all European Union (EU) Member States, as well as in the European Economic Area (EEA) countries Iceland, Liechtenstein and Norway. By law, a company can only start to market a medicine once it has received a marketing authorisation
Most of the EMA’s scientific evaluation work is carried out by its scientific committees, which are made up of members from EEA countries, as well as representatives of patient, consumer and healthcare-professional organisations. These committees have various tasks related to the development, assessment and supervision of medicines in the EU.
In total, the Agency works with a network of over 4,500 European experts, which includes the members of the Agency’s scientific committees, as well as its working parties and other groups. These experts are made available to the EMA by the medicines regulatory
The EMA is responsible for coordinating the EU’s safety-monitoring or ‘pharmacovigilance’ system for medicines. It constantly monitors the safety of medicines through the EU network and can take action if information indicates that the benefit-risk balance of a medicine has changed since it was authorised.
The EMA’s committees are involved in referral procedures to resolve issues such as concerns over the safety or benefit-risk balance of a medicine or a class of medicines in addition to coordinating inspections requested by its committees in connection with the assessment of marketing-authorisation applications or referrals.
SHIPS (SCREENING TO IMPROVE HEALTH IN VERY PRETERM INFANTS IN EUROPE) PROJECT
In January 2016 the INHA was invited to participate in the SHIPS (Screening to Improve Health In Very Preterm Infants In Europe) project. This project uses a unique resource – the EPICE cohort of 6675 babies born before 32 weeks of gestational age and surviving to discharge home in 18 geographically diverse regions in 2011/2012 – to assess the impact of these screening programmes on health, care and quality of life for very preterm infants and their families as well as on coverage, ability to meet needs, health equity and costs at the population-level.
It will also generate new knowledge about assessment tools and methods. Four inter-related studies will be carried out in 11 EU countries by a multi-disciplinary consortium of clinicians (in obstetrics, paediatrics, and child development), researchers (in epidemiology, health services research and health economics) and a user organisation. Partners have the expertise to implement this project and the national and international renown to translate its result into better programmes and policies.
To learn more about this project you can visit the website: http://cordis.europa.eu/project/rcn/193252_en