Policy and Advocacy for Change

Policy /Advocacy

Irish Premature Babies are involved in a number of areas in advocating for greater change in the area of preterm care for both babies and families.
1  The Charity is involved with fellow premature babies charities Bliss in the UK, Tiny Life in N. Ireland and the Social Science Research unit, in the University of London.

 Ireland's Inaugural benchmarking report- Positive Steps in Prematurity.

 White Paper presented with the EFCNI in Brussels " Call to action for Newborn Health.

 The charity have completed a very comprehensive study of feeding options in the Neonatal Units around Ireland. The results of this will study will be published soon and recommendations will be issued, as well as details of practical help that the charity will provide.


(1)The charity are involved with numerous UK medical and charitable organisation who are dedicated to the care of premature babies and supporting families. Our charity is delighted to be asked to work on this project which looks at improving the quality of care and outcome of very preterm birth.

The Preterm Birth study “is part of a wider researchprogramme called Improving quality of care and outcome at very preterm birth.Social Research Science Unit at the Institute of London is working with theJames Lind Alliance to identify uncertainties in treatments and outcomes forpreterm birth and to prioritise them for future research.”

The purpose of the study:

“Promoting partnerships of clinicians and patients toindentify and prioritize important uncertainties relevant to preterm birth.”

Programme aims:

1. To improve the quality of care at preterm birth

2. To enhance family centred care

3. To improve outcome for infants and theirfamilies.

Programme objectives:

1. Indentify and prioritize treatment uncertainties

2. Develop strategies for providing initial care atthe bedside for preterm births.

3. Generate the information to enable the conductof a large trial comparing cord clamping and the initial care at the bedsidewith immediate clamping and the initial care are the side of the room for pretermbirths.

About James Lind Alliance www.lindalliance.org

James Lind Alliance is a non profit making initiative,established in 2004. It brings patients/service users, clinicians and carerstogether to identify and prioritize unanswered questions. The informationgathered will help ensure that those who fund health research are aware of whatmatters to both patients and clinicians. Research suggests involving patientsin the prioritisation of research questions in this way is rare – therefore theinterests of the groups may be overlooked. While the pharmaceutical and medicaltechnology industries and academia play essential roles in developing newtreatments, their priorities and perspectives may differ from those of patientsand clinicians and research questions that matter to them may thus be neglected. Click on the following links to read more information.

-Post-workshop report for awareness meeting.pdf & Issue 2 Preterm Birth Newsletter.pdf

Link for Issue 3 Newsletter :

http://eppi.ioe.ac.uk/pretermbirth/pretermbirth/Blog/Files/3/8/Issue%203%20Preterm%20Birth%20Newsletter.pdf

Link for the steering group:

http://eppi.ioe.ac.uk/pretermbirth/pretermbirth/Blog/Files/3/7/Preterm%20birth%20Steering%20group%20meeting.pdf

(2)Irish Premature Babies was involved in Ireland's inaugural benchmarking report, the charity were also involved in presenting the EFCNI white paper on Maternal and Newborn Health and aftercare services at the European Parliament in November 2011. There are numerous areas pertaining to prematurity and the family that need addressing, our charity intends to play a leading role in making a difference to the life's of families who have premature babies both in Ireland and in Europe.

"Positive Steps in Prematurity"- Irelands inaugural benchmarking report on the burden of preterm birth on support services for premature babies in Ireland was launched at the Royal College of Physicians of Ireland, Kildare Street, Dublin 2 on Thursday 17 November 2011. The launch was attended by leading neonatology healthcare professionals and policy makers focused on discussing the provision of healthcare for premature babies born in Ireland. The establishment of a national neonatal health programme governing all aspects of neonatal health in Ireland is essential in the delivery of a cohesive, structured and uniform high standard of care. The charity were delighted to be the given the opportunity to participate in Ireland's first benchmarking report on prematurity. Please feel free to read the report below:

Irish Benchmarking Report published in conjunction with Irish Premature Babies 2011.

IRELAND 

 Key Data                                                                                   
 Total live births/year  76,021 in 2009
 Preterm births/year  4,540 in 2009(6%)
 Estimated cost of
 premature births
 €66,071 - €78,919/case of extremely low birth weight
 24,079 - €35,236/case of very low birth weight
 €2362 - €19,466/case of low birth weight
 Key Polices  
 National Plan  Active National Neonatal Sub-Committee
 Guidelines  Regional hospital guidelines, national guidelines
covering only some preterm neonatal problems
 Planned Actions  Appointment of The National Clinical Leads in Neonatology
and Paediatrics, 
 National Neonatal Hearing Screening Programme
 National Paediatric Hospital, Specialist Training in Neonatology


The Health Service Executive (HSE) (Irish: Feidhmeannacht na Seirbhíse Sláinte, FSS) is responsible for the provision of healthcare providing health and personal social services for everyone living in Ireland, with public funds. The Executive was established by the Health Act, 2004 and came into official operation on January 1, 2005. The Ministry for Health and Children has overall responsibility for the Executive in government. The HSE is Ireland's largest employer with over 100,000 direct employees, and another 40,000 in funded health care organisations. It has an annual budget of over €14 billion. In addition to the public health system, people in Ireland can avail of a range of private health care services. You must pay the full costs of treatment if you opt for private health care. There are a number of private health insurance companies in Ireland.

PREVALENCE & COST DATA

The Health Research and Information Division at the Economic and Social Research Institute (ESRI) is responsible for the collection, processing, management and reporting of data on all births nationally. The data is collected via The National Perinatal Reporting System (there are 20 maternity units in Ireland). It is the only complete national reporting system on Irish births and it is an invaluable resource for informing policy and service planning. The ESRI compiles this data using data from the twenty maternity hospitals in the state and from data received from independent midwives. The ESRI publishes an annual report, the Perinatal Statistics report, containing national perinatal statistics.[1]

Live births:

According to the 2009 Perinatal Statistics report, there were 76,021 live births in Ireland in 2009 which is equivalent of 17.0 births per 1,000 of the population.[2] This is traditionally the highest birth rate of all 27 EU countries.

The Irish birth rate has grown by 41% in the years 1999 (53,924 births) to 2009 (76,021births).

Preterm births:

In 2009 preterm (born before 37 weeks) were associated with higher risk of perinatal death and comprised 6.0 % of total births. Together with steadily rising annual birth rate this has lead to a significant increase in demands for Irish neonatal services.
The degree of prematurity can be broken down as follows:2

Weeks of gestation   Prevalence
 < 28weeks    0.4%
 28-31 weeks    0.7%
 32-36 weeks    4.9%
 37-41 weeks  90.6%
 42 + weeks    3.4%
 

 Neonatal mortality:

In 2009, the Perinatal Mortality Rate (PMR) was 6.9 per 1000 births, and the corrected PMR (for lethal/potentially lethal malformation) was 4.9 per 1000 births. Of the PMR, the stillbirth (SB) rate was 4.9 per 1000 births and the neonatal death (NND) rate, 2.0 per 1000 births. With regard to neonatal deaths, congenital malformation (lethal/severe) was the leading cause, accounting for 27.8% of deaths, followed by maternal factors, accounting for 20.5 % of deaths.[3] For multiple births the largest contributor was immaturity (27.6%). Immaturity has a significant impact on early neonatal mortality rates with almost two thirds of total perinatal deaths born preterm. In 2009, 62.8% of singleton perinatal deaths and 86.2% of multiple perinatal deaths were preterm. Since termination of pregnancy is traditionally not available in Ireland (it is in fact illegal) there is generally higher rate of infants born with serious congenital diseases who are more susceptible to neonatal mortality. However, it is important to mention that certain amount of women bearing a pregnancy with congenital disease is seeking termination services abroad.

Cost burden:

Cost data regarding the public health care system in Ireland are evaluated by the National Casemix Programme. 2009 costs and activity were published by HSE in 2011. The average inpatient cost for newborn of less than 750 grams is €78,919 with average length of stay of 83.35 days. Every additional hospital day costs €944. For neonates of 750g – 999g the cumulative cost is €66,017 with average length of stay 62.07 days and €1063 for each additional day. In the 1000g – 1249g weight category the hospital day cost is €1042. Hospital day for neonates between 1250g and 2499g can cost between €433 to €1405 depending on the level of care. It costs €2045 per day to look after neonates requiring cardiothoracic surgery (any birth weight) with average cumulative cost of €104,766.[4]

These data do not include any of the family expenses related with the preterm birth.

Government Health Policy Agenda

The public health care system of Ireland is governed by the Health Act 2004, which established a new body to be responsible for providing health and personal social services to everyone living in Ireland - the Health Service Executive. The new National Health Service came into being officially on 1 January 2005; however the new structures are currently in the process of being established as the reform programme continues. In addition to the public-sector, there is also a large private healthcare market.


In 2005, Ireland spent 8.2% of GDP on health care, or €2,814 per capita. Of that, approximately 79% was government expenditure.[5]

The public health system, despite massive expenditure in recent years, has some problems. An ongoing issue is the "waiting lists" for those requiring, in some cases, serious operations.

In 2007, 76% of inpatients were admitted to hospital for operations immediately, 11% had to wait up to one month, 4% had to wait up to three months, 1% had to wait up to six months and 4% had to wait for over six months for operations.[6]

For outpatients, 23% were seen on time, 44% were seen within 30 minutes, 18% waited more than an hour and 7% waited two hours.

The National Treatment Purchase Fund was set up in 2002 for those waiting over three months for an operation or procedure, and as a result over 135,000 patients on waiting lists have been treated so far. The NTPF originally involved the government paying for public patients to be treated for free in a private hospital in Ireland, or sometimes abroad if necessary. The NTPF has reduced waiting times for procedures to an average of between two and five months (with the average being 2.4 months in 2009)[7] compared to between two and five years in 2002.[8]

However, with the arrival of the new Minister for Health new changes and policies are being implemented as a part of the major healthcare reform. This also includes 3 important steps to implement major savings within the NTPF. (a)All public hospitals are being instructed to ensure they have no patients waiting more than 12 months by the end of the year; (b) the NTPF will target particular backlogs rather than routinely accept referrals of patients waiting over 3 months; and(c) the requirement that the NTPF purchase 90% of treatments in the private sector is being ended. In 2011 Minister for Health also established the Special Delivery Unit (SDU) which answers directly to the Minister.

The SDU’s priorities, set by the Minister will encompass[9]:

1. Emergency Departments – waiting times for admission have been unacceptably high in a number of hospitals, often breaching the current 6-hour maximum waiting time target

2. In-patient waiting times – the trend has been upwards recently, despite the work of the NTPF

3. Out-patient waiting times – the time from GP referral to an appointment with a consultant is unacceptably long in many specialties

4. Access to diagnostics – this forms an essential part of the patient journey for all of the areas of access above.

NEONATAL HEALTH POLICY

There is currently no national neonatal health policy or programme in place in Ireland. However, as a part of Faculty of Paediatrics, Royal College of Physicians of Ireland, there is an active Neonatal Sub - Committee ensuring a certain level of consistency in neonatal clinical care. Some official clinical guidelines have been established to date. There have been also some policy statements and recommendations issued by Neonatal Sub – Committee and endorsed by Faculty of Paediatrics of RCPI. These include policy on care at the threshold of viability[10], neonatal resuscitation, minimal standards of neonatal care[11], neonatal transport and neonatal consultant manpower requirements[12].

Independent auditor firm KPMG produced important document in 2008 – Independent Review of Maternity and Gynaecology Services in the Greater Dublin Area. This audit includes substantial section on neonatal practices and has since become HSE policy. It has been the basis of much of the discussions by the management of the maternity hospitals with the HSE.

The Neonatal Intensive Care Outcomes Research and Evaluation database (NICORE) collects relevant data and provides a regional picture of neonatal intensive care admissions in Republic of Ireland and Northern Ireland[13] . These data are then compared to Vermont Oxford Network database to evaluate the performance of participating neonatal units nationally.

The Directorate of Clinical Strategy and Programmes and Directorate of Quality Risk and Clinical Care, have been recently established within the HSE. Their role is to strengthen clinical leadership, improve clinical performance, and ensure care is delivered in a manner that maximizes quality while minimising expenditure. The Clinical Strategy and Programmes Directorate are establishing national programmes to execute this function. The Clinical Lead for Neonatology will be responsible for developing a strategy for the provision of Neonatal services in Ireland as part of the overall National Programme for Paediatrics. The Clinical Lead for Neonatology will work within the context of an overall agreed national governance structure covering the National Programme for Paediatrics. It is through this governance structure that clinical management guidelines will be approved.[14]

PREVENTION & SCREENING

In Ireland, all expectant mothers are entitled to free maternity care, covering antenatal visits, labour, delivery and postnatal care. The Maternity and Infant Care Scheme provides a programme of care to all expectant mothers who are ordinarily resident in Ireland. It combines antenatal care provided by a family doctor (GP) and a hospital obstetrician. Patients would normally attend their GP before the 12th week of pregnancy. The GP provides a further 6 examinations during the pregnancy, which are alternated with visits to the maternity unit/hospital. The first visit to the hospital antenatal clinic should take place by the 20th week. When particular risks of preterm birth have been identified, women are often redirected to hospitals with specialised neonatal units.

In Ireland there is no accepted national policy on the provision of prenatal screening and diagnosis and the availability of such tests is inconsistent. The role of sonographic and serum screening for abnormalities such as foetal aneuploidy is not clearly defined, with some centres offering routine sonographic screening and serum screening, and others performing partial screening tests or indication-based ultrasound. The Republic of Ireland is unique in Europe because of its restrictive laws on termination of pregnancy. Some would argue that prenatal diagnosis is not of benefit because termination of pregnancy is not available in this jurisdiction.[15]

The Clinical Advisory Group of the Institute of Obstetricians and Gynaecologists, Royal College of Physicians of Ireland was set up in 2010 to work with the HSE and the National Director for Obstetrics and Gynaecology to develop and implement national clinical guidelines.

There is well established postnatal screening established in Ireland. All newborns are currently screened for cystic fibrosis, phenylketonuria, homocystinuria, maple syrup urine disease, classical galactosemia and congenital hypothyroidism. In addition, there is now established newborn hearing screening programme in the south – west HSE region which will be extended nationally in the short term.

MEDICAL TREATMENT & CARE

Organisation of neonatal care

There are 19 public and 1 private maternity units in Ireland. Out of these 8 departments have currently status of regional neonatal unit (Level III) accepting referrals from sub-regional centres (Level II) and general hospital based neonatal units (Level I). Three of the regional centres are in Dublin and one each in Cork, Limerick, Galway, Drogheda and Waterford. Neonatal transfers requiring admission to regional units are provided by National Neonatal Transport Programme which operates ground and air modes of transport and covers the whole Republic of Ireland. Due to the funding issues this well-developed transport system only operates (takes referrals) between 9 am to 5pm, 7 days a week. Out of hours the sub-regional and general hospital units depend on their own resources when they require neonatal transport to a higher level of care centre. All the 8 regional neonatal centres also have to arrange they own transport team when they need to transfer neonate(5 pm to 9am) to surgical departments in the nation’s paediatric hospitals. This is generally considered insufficient among the medical professionals working in neonatal/paediatric medicine. In the view of current health care budget cuts it seems unlikely that this transport service (which can be a determining factor in preterm neonatal mortality/morbidity) will be extended to 24/7 type of service in the short term.

Neonatal surgical services are only available in 2 paediatric hospitals in Dublin. The limited number of skilled neonatal/paediatric surgeons and lack of full time dedicated neonatal transportation system(as discussed above) put an extensive pressure on the current paediatric surgical departments and will mean a future challenge as the number of preterm infants is steadily increasing.

Standards and Guidelines

The 8 Level III NICU’s have all developed system of local guidelines that cover all usual clinical situations. These units are all at least partially staffed by consultant neonatologists. The actual clinical implementation of certain clinical practices depends on individual preferences of consultant neonatologist working in the particular unit. The remaining 11 publically funded neonatal units are part of general paediatric departments in general hospitals and as such they are staffed by general paediatricians some of whom may have limited expertise in neonatology.

The Clinical Lead for Neonatology recently appointed by HSE/RCPI will be responsible for development of national neonatal guidelines that could become very useful especially in above mentioned sub-regional neonatal units.

Some NIDCAP (Neonatal Individualized Developmental Care Program) practices are regularly implemented in the 4 biggest NICU’s in Ireland (3 units in Dublin, 1 in Cork) and there is an increasing awareness of it in the smaller units across the state. Kangaroo care is also used in the major NICU’s and its use is regularly discussed while planning the day to day care of preterm infants. However, fully developed NIDCAP type of neonatal intensive care is impossible due to the lack of space, funding and staffing. HSE is currently implementing nursing and medical staff cuts which will inevitably lead to the decrease in the quality of care.

The lack of structured training for future neonatologists also contributes to the fact that progress in modern neonatal intensive care depends on limited number of consultant neonatologists. Neonatology is not a recognized subspecialty by Irish Medical Council. There is no neonatal fellowship or subspecialty program offered currently in Irish university-based maternity hospital which leads to outflow of neonatal trainees abroad. The application for Specialist Training in Neonatology has been submitted to Irish Medical Council. Non-consultant neonatal doctors generally remain in any given department for 1 or maximum 2 years which leads to the fact that most of the doctors working in Irish neonatal departments are essentially in very early stages of their neonatal training and are lacking the necessary experience in exposure to the high-end levels of neonatal care. This can directly translate to the quality of routine day to day care. Neonatal unit in the country is currently staffed to British Association of Perinatal Medicine(BAPM) recommendations.

Parent Involvement and Education

In most Irish neonatal units, before the preterm infant is born the parents are counselled by the attending neonatologist. Visiting hours in NICUs across the state are liberal with free parental access at any given time except when important procedures or staff handovers are being done. Parental involvement in the direct care of premature infants (day to day care, handling, feeding, skin care) is limited when the infant is in the main NICU and increases once the infant progresses to a step down wards. Many parents are still cautious about getting involved in the infant cares at this stage through a combination of fear, lack of education and poor and inconsistent support structures within some of NICUs.[16] There is no or very inadequate rooming in or accommodation facilities for the parents in the vast majority of the NICU’s in the country.

Towards the end of their child’s hospitalization the parents are more often invited to directly participate on the care of their baby such as feeding etc. They are encouraged to learn the routine of day to day care of premature infant; however the parental experience and confidence are limited by the lack of rooming-in facilities in Irish maternity hospitals. Parents who are bringing ex premature baby home are also taught first aid and neonatal resuscitation basics.

Vaccination

All preterm infants born in Ireland follow the same immunisation schedule as all the other children born in the country. The country wide vaccination program is coordinated by the Health Service Executive (HSE) National Immunisation Office who provides detailed guidance on all types of vaccinations and issues relevant documents and very well developed guidelines. The vaccination schedule begins at the chronological age of 2 months. Vaccinations are free of charge and are given by the GP’s or at school. In case of infants who are in NICUs the vaccines are given by neonatal physicians. RSV prophylaxis is used across the state for ex – premature infants. However, there is a wide variation in indication criteria nationally. There is currently large multicentre RSV population study being launched which should specify the target groups of infants who should be receiving RSV prophylaxis in Ireland.

Aftercare and long term care

In Ireland, the long term follow up care of infants born generally at less than 33 weeks of gestation or less than 1500 grams of birth weight is for the first two years of their life organized by the hospital/NICU consultant. Infants are assessed from developmental, dietetic, physiotherapy points of view. The medical follow up care is generally provided by the same consultant neonatologist who looked after the child in neonatal intensive care or special care baby unit. There is currently a lack of dedicated developmental physicians-a factor that may contribute to overbooking of developmental clinics which are run by neonatologists.

In case of need for early intervention the child is referred to early intervention teams that are locally accessible for the family. In Ireland the early intervention teams are few, overbooked and understaffed which leads to referral-to-appointment times being months rather than weeks.

Currently the long term care fails a big percentage of those infants whose birth weight and gestation fall outside the parameters for automatic follow up. Identification of any developmental issues becomes then responsibility of family physicians (GP’s).

The Irish health system currently has unacceptable waiting lists and the delays incurred in having children assessed and availing of the services they require impacts negatively upon the premature child and his/her development. Families who have the financial means oftentimes opt to avail of private services to ensure that their child’s developmental issues are addressed speedily thereby feeding the gap that exists between the two tiered health system in Ireland. [17]

SOCIAL & FINANCIAL SUPPORT

There is no specific social or financial support system for premature infants and their families in Ireland. The maternity leave lasts for 26 weeks. Under the Maternity Protection (Amendment) Act 2004 at least 2 weeks have to be taken before the end of the week of infant's expected birth and at least 4 weeks after. The mother can decide how she would like to take the remaining weeks. Generally, employees take 2 weeks before the birth and the remaining weeks after. There is no additional maternity leave granted for mothers of Irish premature babies.

Employers are not obliged to pay women on maternity leave.[18]Maternity benefit is paid by Department for Social Protection also for 26 weeks and the amount depends on mother’s previous earnings. For families with other children the financial and social strain of combining caring for children at home whilst also visiting the NICU is immense and currently there are no standardised social service practices to aid these families. Any assistance that that they receive is largely dependent upon where in the country they are located and how sympathetic their local social officer is.[19]

There is some extra allowance options for the parents of premature infants, however to be eligible for them usually requires high degree of disability which is rarely the case with today’s ex-premature infants. Yet the financial burden remains in case of mildly/moderately disabled infants whose families do not fulfil the criteria for these allowances. Domiciliary Care Allowance is a monthly payment for a severely disabled child who is under age 16 and needs full-time care and attention far beyond what is normally required by a child of the same age.[20] Carer's Allowance is a payment to people living in Ireland who are looking after someone who is in need of support because of age, physical or learning disability or illness, including mental illness. The Carer's Allowance is not payable to everyone, it is mainly aimed at carers on low incomes who live with and look after certain people who need full-time care and attention. Under the Drugs Payment Schemefamily has to pay a maximum of €132 a month (from January 2011) for approved prescribed drugs, medicines and certain appliances for use by patient and his/her family in that month.

OUTLOOK

There is little reason to believe that in the presence of current economic crisis which has had tremendous impact on health care in Ireland there will be any major move towards the changes/implementation of neonatal health policy at government level unless it is initiated by the neonatal professionals and parent groups. The awareness remains very low among public and decision makers as well. It will be up to the health professionals to make changes and improvements within the current budgets.

There will be a big expectation from the newly appointed Clinical Lead in Neonatology in regards to development of national guidelines addressing the levels of care in neonatology, full time neonatal transport programme and providing statistics information that could be used to develop economic arguments for improved policy and resources in neonatology on the governments level. Access to long term care, physiotherapy and early intervention support services needs to be addressed vigorously on the state level.

Plans for a new paediatric hospital are considering modern approaches in family centred neonatal care including rooming in facilities and family infrastructure. Establishment of this new national paediatric institution could also bring changes in training of aspiring neonatologists.

The National Newborn Hearing Screening Programme has already been established in some parts of the country and will be extended nationally in the short term.

Other possible recommendations for the current policy makers could be considered:

1. Increased awareness of the topic of prematurity

2. Implement a National Prevention and Screening Programme for high Irish pregnancies

3. Introduction of a National Public Policy on Neo-Natal Health

4. Employment of more consultant neonatologists to meet the international standards

5. Extending current Neonatal Transport Programme to 24hr service

(3) The 10 points Call to Action for Newborn Health was initiated by EFCNI and the European national parents' organisations including Irish Premature Babies


On 23 November 2011, it was launched in the European Parliament in collaboration with the European Parliament’s Interest Group on Maternal and Neonatal Health, alongside EFCNI White Paper Caring for Tomorrow: EFCNI White Paper on Maternal and Newborn Health and Aftercare Services. Today, there are no recognised European standards to address these inequalities. The level of care a baby and their family experience often falls far short of promoting and protecting the right to a healthy start in life. Targeted health and social policies on newborn health are needed as a matter of urgency. EFCNI and the European national parents' organisations call on EU and national policy makers, payers, patient and parents’ organisations, healthcare professionals, academics, industry and the public to unite and work in partnership to ensure that each baby born in the EU has the best possible start in life. In order to meet these goals, policy makers should:



  •  1 Recognise maternal and newborn care as a top public health priority and integrate both into European and national strategies on public health, chronic conditions, healthy ageing and research.
  •  2 Establish and implement targeted national strategies for minimising pregnancy risks on the basis of best practice and with the advice of interdisciplinary taskforces.
 3 Guarantee that all newborns have equal access to high quality care; that high risk newborns in particular receive appropriate specialised services and aftercare programmes. This requires early diagnosis,improved standards of care with documented medical follow up and optimal healthcare services specifically aimed at preterm and high risk newborns tackling chronic diseases.

4  Ensure appropriate and continuous educationand training for all healthcare professionalsworking in pre-conception, maternity, newborn care and aftercare fields. The quality of training should be raised and, where appropriate, harmonised across Member States so as to promote equal standards of care for all newborns.

 5  Encourage the uptake of a family-centred approach and developmental care by neonatal hospital units to help alleviate newborn and parental stress and anxiety and to promote parenting roles both in the hospital and after discharge.

  6 Provide for equal and easy access to full information, counselling, education and, if necessary, training of (expecting) parents on pre-conception and maternal issues, preterm and newborn care, early parenthood and aftercare.

  7 Promote the right of parents to have access to adequate psychological and social care and support systems in order to provide a stable environment for the birth and care of newborns into their childhood.

 8  Launch wide scale public health awareness campaigns around healthy pregnancy, the growing incidence of prematurity and the associated risks.

 9  Establish harmonised and comparable European data sets for maternal health outcomes and preterm birth , the collection of which should be founded on the basis of common definitions and measurement criteria to allow for comprehensive study and comparative analysis and to monitor and improve health outcomes.

 10  Provide funding for research on maternal and newborn health and aftercare which aims to prevent preterm birth and reduce the number of chronic illnesses suffered by babies born prematurely.


Read the report Call to action newborn health.
efcni.org/index.php?id=1890
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