Publications

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:

  1. Develop and implement a targeted public policy on neonatal health, with the active engagement of healthcare professionals and parents.
  2. Increase general awareness of prematurity (its health, social and economic implications).
  3. Develop and implement a National Prevention and Screening Programme for high risk pregnancies.
  4. Take active measures to improve neonatal workforce education and neonatal units staffing in order to meet international standards.
  5. 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.

CLICK HERE for this report from efcni.org

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.

CLICK HERE for this report from efcni.org

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”.

CLICK HERE for this report from efcni.org

 

Image including two report covers. Top cover is 'Too Little Too Late?'. Bottom cover is 'Caring for Tomorrow' report, both by the EFCNI

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.

Collage image of pages from the 'Bringing to Life Patient Experiences in Prematurity Survey 2014 Ireland'. Clicking on this image will download the Survey in PDF format.

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.

Please click on this link to view the Model of Care for Neonatal Services in Ireland document.

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.

Click on this link to view the full report

 

COPOP – Core Outcome Set For Evaluation Of Interventions To Prevent Preterm Birth

The COPOP Study, conducted by the Global Obstetrics Network, a group of international investigators that
perform clinical trials and observational studies in maternal fetal medicine and obstetrics and the INHA, developed a core outcome set for studies on preterm birth with an international multidisciplinary perspective. The implementation of this core outcome set will ensure that data from all preterm prevention trials can be compared and combined.

The paper was published in The Journal of Obstetrics and Gynecology in Jan 2016:
http://journals.lww.com/greenjournal/Abstract/2016/01000/A_Core_Outcome_Set_for_Evaluation_of_Interventions.9.aspx

 

National Children’s Healthcare Charter

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.

Table showing various aspects of what parents and potential parents can expect from the Irish Health Service. 8 categories within 'expectations' are listed as well as suggestions on what parents can 'do to help'.

Source: www.hse.ie/eng/services/yourhealthservice/hcharter/National_Healthcare_Charter.pdf

Review of Maternity Leave for Parents of Infants in the NICU

In December 2016, the INHA launched an online petition calling on the Irish government to review the law on maternity leave for parents of infants in the NICU. The petition gathered in excess of 55000 signatures and the INHA presented the petition and an accompanying report to government officials in April 2017. Click here to access the report.

 

In October 2017 the Irish government changed the Maternity Leave legislation. Under the new arrangements, in addition to the current 26 weeks of paid maternity leave a mother will be entitled to an additional period of paid
maternity leave. The additional period will commence at the end of the standard 26 week period of paid maternity leave. The additional period to be added will be the number of weeks from the baby’s actual date of birth up to
two weeks before the expected date of confinement which would have been the 37th week of the pregnancy, at which point the current entitlement to 26 weeks leave and benefit would normally begin. So, for example where a baby is born in the 30th week of gestation the mother would have an additional entitlement of approximately 7 weeks of maternity leave and benefit i.e. from the date of birth in the 30th week to the two weeks before the expected date of confinement. This additional period will be added to the mother’s normal entitlement to 26 weeks of maternity leave and benefit.

OPPTIMUM Study

The INHA contributed to the Lancet editorial of this study which looked at the use of progesterone as a preventative for preterm birth, Feb 2016 (THELANCET-D- 16-01232).

Click here for the full text: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(16)00543-2/fulltext

Setting Preterm Birth Research Priorities With Multiple Professions And Service Users In The UK

A priority setting partnership was established with families with experience of preterm birth and organisations representing them, obstetricians, neonatologists, midwives and neonatal nurses.

The objective was to identify research uncertainties and prioritise future research areas in preterm birth that are most important to service users and practitioners. Research uncertainties were gathered from surveys and analysis of systematic reviews and clinical guidance. Prioritisation was through voting; final ranking occurred at a facilitated workshop, as advocated by the James Lind Alliance.

The paper was published in the Archives of Disease in Childhood, Vol 99, issue suppl2, doi:10.1136/archdischild-2014-307384.349

 

PRIMARY EYECARE SERVICES STEERING GROUP REPORT

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.

http://www.hse.ie/eng/services/publications/Primary/Eye-Services-Review-Group-Report.pdf

 

Involvement of parent representatives in neonatal research

INHA were delighted to endorse the Position Paper by EFCNI on the Involvement of parent representatives in neonatal research.

Preamble

During the last few years the European Foundation for the Care of Newborn Infants (EFCNI) as well as
parent organisations from EFCNI’s network have been approached regularly by researchers to support
different projects in the field of neonatal care and have since then gained a lot of experience in this field.
A survey among EFCNI’s partner parent organisations worldwide showed that similar challenges, gaps
and needs can be found in different countries and settings.

This Position Paper has been developed as a result of the experiences of EFCNI and its partners in recent
years, and follows discussions with representatives of national parent organisations and other stakeholders
in this area, who all see the need for enhanced efforts to develop a wider partnership in neonatal
research, to produce positive impact on the health of preterm or ill newborn babies, their families and
society. It should be seen as a first step in a process towards partnership between researchers and parents
and may in the future help to set principles for the interaction between parent representatives and
researchers in order to facilitate a fruitful collaboration between stakeholders in neonatal research.

Aim

This Position Paper should serve as a basis for future structured and meaningful involvement of parent
representatives in research projects. It should be used as guidance and reference by all stakeholders
involved in research projects, who wish to put into practice good collaboration and partnership with
patients, and particularly when parent organisations are engaged as representatives of affected families.
The paper highlights current challenges and gaps as experienced by EFCNI and its partner organisations,
discusses and recommends possible next steps and suggests principles towards an infrastructure and
framework that, in the long-term, will lead to a mutually beneficial partnership benefitting research and
the overarching aim to meet the needs of the patients and families.

To read the full text, please click on the link below

http://www.inha.ie/wp-content/uploads/2018/01/2017_10_26_Parent_In_Research_web.pdf

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