Proposition 53K0380

Proposition de résolution concernant l'amélioration de la protection et du suivi des enfants prématurés.

General information ¶

Authors

Ecolo Muriel Gerkens
Groen Meyrem Almaci
Open Vld Ine Somers
Vooruit Maya Detiège

Submission date

Oct. 13, 2010

Official page

Visit

Status

Adopted

Requirement

Simple

Subjects

health policy infectious disease child resolution of parliament public health disease prevention respiratory disease health insurance

Voting ¶

Voted to adopt

Groen CD&V Vooruit Ecolo LE PS | SP Open Vld N-VA LDD MR VB

Contact form ¶

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Discussion ¶

April 19, 2012 | Plenary session (Chamber of representatives)

Full source

This resolution was extensively discussed in the committee and was unanimously adopted, so I can refer to the written report.

Thank you well.

Approximately 8% of all newborns are born prematurely, and approximately 1 to 2% are born before the 32nd week of pregnancy. That is two months too early. The number is increasing, by the way. Advances in the treatment of the most vulnerable among us have significantly reduced the mortality rate among these babies, but prematurity can affect the health of these babies, even in the longer term.

In March 2010, three colleagues – Yolande Avontroodt, Maya Detiège and Muriel Gerkens – organized a round table on this subject. They concluded that a uniform system of registration of premature births, a uniform multidisciplinary and systematic follow-up system and an optimal prevention of serious infections in premature babies are needed. They also supported the need for better information to parents about external favourable factors. It is precisely on the basis of these conclusions that we worked on the resolution.

The resolution responds to the demand for uniform registration and sufficient data to be included in the statistics of the World Health Organization. This allows us to compare the policy on premature pregnancy in our country with that of abroad.

This resolution also addresses the old demand of doctors to systematically monitor premature children. We should also strive for good prevention against infections and we should inform parents properly.

Finally, and not least, we also use this resolution to request an evaluation of the neonatal services in our country, both in terms of the quality of the care they provide and the pathology they treat, as well as in terms of the level of occupation. In fact, we often see a suboccupation in some services, compared to a overoccupation in other services.

That is why, in this resolution, we call for future funding based on responsible laws, which can take into account the severity of the pathology treated in the various centers and allow for proper financing.

The reason for today’s resolution is a round table held in the Parliament in 2010. Mrs. Gerkens, Mrs. Avontroodt and myself then organized, together with specialists in neonatology or preterm birth and parent associations, a round table.

The starting point was a European audit conducted by the European Foundation for the Care of Newborn Infants in 13 countries. The audit showed that despite scientific progress, premature births remain frequent in Europe and that in our country, and in Austria, Germany and Spain, the percentage of premature births is the highest. In Belgium, an average of 7.4% of all newborns are born before the 37th pregnancy week, which corresponds to an average of 6 000 premature births per year.

The audit also revealed that national policies for the prevention and follow-up of premature children in the European countries, and therefore also in Belgium, are almost nonexistent. These are only isolated measures, which, according to the audit, lack coherence in the approach and follow-up of these babies.

As a final point, the report reports a shortage of information and education. Based on the information we received, a number of strength lines were poured into a resolution. We are pleased that the Minister, who had confirmed her commitment at the round table, also held the word and spontaneously incorporated a number of difficulties in her policy. We are also pleased that we quickly found support from a number of other colleagues. With their contribution, the recommendation has become stronger than the original. I therefore give them the opportunity to illuminate the strength lines themselves.

I will clarify two points. First, the request to extend the vaccination. Second, the lack of automatic follow-up of premature births.

Professor Van Overmeire explained on the round table that premature babies during their stay in the maternity clinic are very susceptible to respiratory infections. This is because their respiratory system is not yet fully functioning, making infections develop faster and easier. Infections that give an ordinary baby a cold can be deadly for a premature baby. Bronchiolitis is the infection that causes serious complications in premature babies and is caused by the respiratory syncytial virus. Premature babies who get the infection are not only more likely to develop immediate complications but are also more likely to develop asthma at a later age. Some premature babies are therefore vaccinated against this severe infection but not all babies get the vaccine, even those who are at the same risk of infection. We want to eliminate this discrimination.

Second, the succession of the premature. Dr. Kalenga, Head of Intensive Neonatal Care in Name and the Parent Association confirm the results of the European audit. According to them, premature babies are very little followed after dismissal from neonatology. However, this is necessary because many problems such as learning problems, problems in motor development and those of the nervous system only come to light later. Unfortunately, the succession still depends too much on the place where the child was born. Some hospitals send forward to multidisciplinary centers and others do not. As a parent, it is difficult to find the right help. Parents are not always aware of the importance of a good succession. In addition, they cannot recognize all the signals and they do not know the network of healthcare services sufficiently. To avoid these problems and to guarantee a good follow-up, good communication between general practitioners, pediatricians and neonatal centers is necessary. There is also a need for systematic multidisciplinary observation of premature children to monitor their neurological, motor and respiratory development, as well as their health in general.

Currently, however, there are no common guidelines or good practice guides for organizing the follow-up of children and their parents on the medical, social and relational levels.

Therefore, we call on the Government to work on a proper accompaniment.

Mr. Speaker, Mrs. Minister, dear colleagues, as indicated during the general discussion in the Public Health Committee, the question of short, medium and long-term treatment of prematurity constitutes a real issue. The numbers in this area are constantly increasing. A reflection on the means used to prevent it is necessary, but it is especially important to look at how to accompany these births and then these children.

However, a positive fact has emerged from our work. Since the drafting and filing of this text, which dates from a few years already, many steps have been taken. They allow, for example, to correctly and reliably assess the quality of perinatal care, in particular through the harmonisation of birth registration systems.

As we have been able to see, this political will shared both by the federal and by the Regions and Communities allows today to offer children, their parents and care staff a national system of multidisciplinary and generalized monitoring of premature babies.

As indicated by the industry professionals called to comment on the draft resolution, the dynamics of public authorities are still up to date. The aim is to prevent, in an optimum and harmonised way, complications related to prematurity.

A reflection on the revision of standards and the financing of NIC services and approved N beds still seems necessary. The severity of the pathologies supported by these services must ⁇ be better taken into account. This call for reform of the system is, for my group, primary.

It is essential that these children and their parents continue to be able to benefit from the best long-term care and follow-up. Let us not forget that the consequences of prematurity can only be detected very late, during the development of the child.

I regret that the Minister was not present. During the meeting, the Minister was also absent. If I am allowed to believe some moms from your majority following a newspaper article, then the minister is not doing well. I quote from that article: “Belgium is one of the European countries where the follow-up of premature babies is the worst. We have no global approach at all.” It continues: “Now there is not even money to give parents a folder about the possible complications. In addition, there is often no succession.” These are a few quotes from the interview.

If Mrs. Onkelinx were to be here and if I as an opposition member could proclaim the same thing, then I think, knowing her temperament, that she would get angry. It must be said that this would actually be right. What Mrs. Detiège does not say in that newspaper article is that little or nothing remains from the original resolution. This resolution was completely outdated because there is indeed something happening. To be honest, I also find it very unfair to all people, to the centers, to the doctors and to the nursing staff to announce in an interview that...

You say the minister would be angry. I just said in my speech that Minister Onkelinx was present at the round table. I found that she was extremely quick in capturing some of the power lines that were put out at the time. We did not know that, because we then drafted the resolution based on the expertise of the specialists present. As a politician, you can’t do more than listen to the data and the feedback you get. If the minister does a good job, take off the hat.

I am talking about an article that appeared in the newspaper this week. In it you say that Belgium is one of the European countries – is, was not – where the succession of premature babies is the worst. What you cite in that newspaper article is criticism of the current situation. If I as an opposition member would say the same thing, then I suspect, knowing the minister, that she would be quite angry.

I find your comment that there is actually no succession is very unfair to the nursing staff, the doctors and everyone involved with it. Everyone who has done this knows that there is indeed succession.

In the past, there was a problem with registration. However, it is not because the registration does not proceed correctly that there is therefore no succession.

The interview does not discuss what I think is most relevant, in particular the fact that the funds for neonatal centers, for intensive care, the specialized services for premature babies, are not distributed according to the real needs of those different centers, nor according to the actual workload of those centers, nor according to the actual level of occupation, but according to the number of beds recognized in a distant past.

The question in this resolution to allocate the resources based on the level of occupation and also based on the quality of the services provided and the value of care, thus the pathology, in other words based on responsible beds or activities, is, in our opinion, the essence of it. That is also why we will fully approve this resolution.

The Minister is not present. The question raised in this resolution is not a new question at all. It was already stated in 2006 in a consensus text of neatologists and pediatricians of the NIC services. There are seven centers in Flanders, six in Wallonia and Brussels each.

We note that there are very large differences between the different centers in the degree of occupation, also regionally. For all institutions in Flanders, the average occupation rate is 97 %, in Brussels it is 91 % and in Wallonia only 78 %.

It is getting worse. The Flemish institution with the lowest occupation rate still achieves an average of 88%. In Brussels, the institution with the lowest occupation rate reaches 64%.

In Wallonia, the Charleroi institution has the lowest occupation rate with only 42 %. Why so low? Because in Charleroi, if necessary, there should be two centers, while, for example, in West Flanders, in the AZ Brugge, there is a occupation rate of 135 %, with a thus almost continuous overoccupation. This center must treat much more premature babies than it is recognized for and therefore sometimes must refuse premature babies and forward to other centers.

There are, therefore, centers with an average occupation of 42 % and centers with an average occupation of 134 %. This is clearly not true. This discrepancy existed in 2006. The NIC centers with a very low occupation rate are not just a waste of resources that can be much better deployed elsewhere. Additionally, when there are too few activities, the quality can be compromised. Scientists agree that a minimum of 50 shootings per year of children with a birth weight of less than 1.5 kilograms is a stable criterion for guaranteeing adequate care.

However, as mentioned, this is not a new question. In April 2009, the National Council for Hospital Services, chaired by Peter Degadt, repeated the question. In an opinion, the Council formulated the following findings and recommendations. I quote: “The current capacity...” – in 2008 – “...is disproportionately distributed across the 19 centers. The recordings of the newborns are rather very irregularly spread across the centers. The workload of the various NIC services is also very irregularly distributed. There is an unfair financing of the NIC beds based on approved beds.”

In other words, there is demand for a different type of funding based on the actually acquired neonatal pathology through responsible NIC beds. This has already been established in 2006 and 2009. Hopefully, this resolution is now in order.

No one is asking party for more centers. Rather, stricter conditions of recognition would reduce the number of NIC services – but not the number of beds – which may allow to compensate for the lack of neonatologists, not the most attractive specialization. In this way, an adequate nursing framework could also be ensured.

It is clear that urgent work needs to be done of a redistribution of existing resources, based on a financing according to the severity of the pathology, according to the need, and thus a financing based on responsible beds and responsible activities.

I hope that this resolution will be implemented quickly. I am very sorry that this resolution still needs to be adopted. She should have been there for a long time.

I have three comments on this resolution.

First, it was important that this resolution be amended and, thanks to this concertation, this collective work, it will probably today receive broad approval. It was to be amended simply because there was a certain period of time between the time it was drawn up and the time when one was able to work on it outside the period of ordinary business.

Second, our group considers it important to extend data recording to children’s tracking. Even though many things were done, the recording of data did not take place. It is known that neonatology services provide follow-up measures. The aim was to optimize them. This resolution thus actually responds to a demand from the sector.

Finally, the CDH wants the financing system to be modified according to the activity rather than on the basis of approved beds. In fact, this system, dating back to the nineties, no longer corresponded at all to the reality. The number of premature babies taken care of by the services and the severity of the pathologies must be taken into account.

Here are a few comments I would like to make on the content of this resolution.

Communities had already taken measures in this area. The French Community had started, in 2007, a public co-financing with Cap 48 for the follow-up of large premature babies. This was followed up with the field actors. I can only emphasize the important role that must remain at the federal level, namely the coordination between the Communities and the measures taken there, and the field actors. Therefore, we will support this resolution.

Mr. Speaker, first of all, I would like to thank my colleagues for the constructive atmosphere in the committee in creating this resolution.

I am pleased with the nuance of colleague Schyns in the debate referred to by colleague Beuselinck. It is true that we do not score well in a European audit, but everyone knows that this has much more to do with the way we register and with the fact that the registrations are mainly from the services of neonatology and too little from the first and second line.

This does not mean that there is no excellent work in the field today. I wasn’t happy with the way certain media ⁇ this this week. There is really great work being done on the ground. It is precisely these services that demand better tools and support in the field of premature birth.

This resolution is a step forward. Additional RIZIV funds are released. It is a pity that the Minister is not here. She was also not present in the committee when this issue was dealt with. It is a pity that she goes to certain gremies or hearings, but this is not discussed with us in the committee where the work takes place.

It is important to obtain additional funds for dealing with bronchiolitis. This is a major condition in children born after 32 weeks. Equally important and a demand from the services of neonatology is a much better succession. There are already funds available to recall children who were admitted there prematurely, up to the age of eight years. Even after eight years, however, one is often susceptible to this condition. It is important to ensure succession through the first and second line. We find that children from socially weaker groups or less vulnerable groups often do not receive that succession. That is the second element of the resolution, in particular the commitment to information and awareness of parents, soon after birth. The further medical follow-up in the first and second line is a justified question from the resolution.

As far as the nineteen centers for neonatology are concerned, I think that today the enormous amount of resources is not used in the most correct way. Colleagues Beuseling and Schyns referred to it.

I look at my own province, for example. In Bruges we have in recent years a service where 15 beds are compensated. However, 25 premature children are constantly present. People do great work in very difficult conditions. I think we should look at the distribution of resources.

We do not require additional resources. However, we demand that the current supply of resources be redistributed, so that the resources are deployed in the right places, according to pathology and according to numbers.

This is a good and important text, but it remains a resolution.

Mr. Speaker, I see that the Minister is currently calling and is not so interested in this resolution.

Mrs. Minister, I would like to ask you to take this resolution au sérieux and really take steps forward on the ground for the people in those services. (The Minister holds a telephone conversation)

I think the Minister does not understand me. The staff in these services really want to move forward. I think the Minister’s attitude is a lack of respect. (Applause of Applause)

I will not repeat my colleagues. I would like to say that I liked our method of working on this text.

Indeed, initially, in March 2010, with Maya Detiège and Yolande Avondroodt, we organized a round table around the problem of premature babies. The Minister, already Ms. Onkelinx, participated and submitted proposals. In November 2010, we submitted our resolution and, between November 2010 and November 2011, progress was made in relation to the problems highlighted by parents or doctors.

I am very pleased with your presence because we have not had the opportunity to discuss with you since the resumption of our work. We have incorporated advances and changes in our text. We took into account the 2 million budget granted in January 2011 for the monitoring of multidisciplinary teams of children up to the age of eight.

We acknowledged that, since the drafting of this resolution, harmonisation efforts have been made between the Communities at the level of data recording. We now request that the recording of these data be made fully compatible with the recording carried out by the WHO; it is important to be able to compare them globally. As a result, our data will also appear in the statistics and we will take advantage of the experiences of other countries.

In addition, we took into account the fact that reports and opinions were prepared at the request of pediatricians; they were submitted to the College of Chief Physicians in order to improve the organization and operation of the specialized services of our hospitals, as well as the collaboration between hospitals and specialized centres.

From there, we request that the follow-up of this report can lead to the establishment of good practices and effective collaboration between the structures.

There was also the question of reimbursement of the preventive treatment for respiratory syncytial virus (RSV) that affects these especially fragile premature children and victims of bronchiolitis. Following the round table, the House adopted the principle of reimbursement of this treatment for children born before 32 weeks. In the resolution, we demand that it also apply to those born before the 35th week – provided they have passed through a neonatal center, given the costly budget impact. Furthermore, an assessment of effectiveness is desirable before generalizing this principle.

Finally, another point emerged during our discussions. It is about taking into account the funding, but also the operation and organization of the specialized centres, since it seems that some of them host too many children in view of their capacity, while others have too little. That is why we found it important to draw the attention of the Minister and the Government on the need to review funding and criteria and ⁇ also the allocation of places, doctors and teams on the basis of an evaluation and monitoring of the practices and collaborations that exist between these centers and first and second line professionals.

I would be interested to hear you about the follow-up that you believe can be given to this resolution. Certain elements of course have budgetary implications. Can you take them into consideration now? The refund of the treatment will be executed by INAMI. Other measures may not be expensive in regards to reorganizing and evaluating practices.

In any case, I would like to thank my colleagues for accepting to participate in this collective work.

One last point. In the resolution, we talk about the importance of prevention. I am not only talking about the promotion of health, but also about the guidance of parents.

I think especially about the pregnant woman so that she avoids adopting risky behaviors that favor premature births; I think about how to treat the child’s environment (air quality, in his room in particular).

Furthermore, it would be interesting to work with parents and health professionals on the issue of improving the child’s immune system during pregnancy and after birth. Indeed, while RSV treatment is important and necessary to protect premature children, avoiding using it by promoting adequate nutrition and environment and strengthening their auto-immunity would be a good thing for these children; it would also be a good thing for the INAMI budget.

Mr. Speaker, colleagues, this is a valuable proposal for a resolution, as there is indeed still a lot of room for improvement when it comes to the protection and supervision of premature children, as the previous speakers said, including in the area of allocation of resources. There must be a balanced distribution of resources. This is addressed in part in this resolution.

Unfortunately, this resolution has been delayed considerably, including due to the lack of homogeneous packages of powers, including in the field of Public Health. Different governments are involved in this matter and it is not always agreed on who is competent for what. This is ⁇ the case when it comes to preventive health care. Everything would be much easier, faster and more efficient if we finally implemented the five resolutions of the Flemish Parliament, but unfortunately there is no political courage and political will. The patients, and in this case the weakest patients, are the victims of this.

Since respect for life, even for the unborn life and therefore also for the premature babies, for the Flemish Interest, is of primary importance, we are pleased that a acceptable compromise has finally been reached. Our group will in any case approve this resolution.

Mr. Speaker, I will not repeat what my colleagues have already said, but I will speak a little like an experienced expert.

I took my first oath in this hemisphere in June 2007 and on July 11, 2007, I gave birth to my eldest son two months early. On July 13, 2010, I gave birth to my second son five weeks too early. I can assure you that many parents of premature children should swallow as soon as the birth comes and they are told what complications are possible for the rest of the child’s life. Moreover, it is not always very concrete.

On a neurological level, there is a risk of brain bleeding. In addition, it is waiting for what will happen once children sit in school and in their later lives. In the lung, complications are also possible. This is incredibly important. The evidence of this is that even during my birth, corticosteroids were still administered to give the lungs some extra chance during the minutes before birth.

I give this testimony as an experiential expert only to show that a lot of people today have questions about succession. Measurement is knowing and it is therefore extremely important. This applies not only to them, but also to those who provide excellent care in the university centers. I’m talking about the pediatricians who deal with premature babies. I’m talking about all the people involved in all those intense files. Neurological and respiratory complications remain focus points. I went to the hospital with my child eight times during the first year of life. I have had five hospitalizations because of this virus. It is a story that each of those parents can tell you.

Today we are taking an important step forward for many of those children and their parents who struggle daily with what the future will bring. Helping through additional income for those who are professionally engaged in succession and registration, and those who are faced with it for family reasons, is of great importance.

For me, for many parents of premature children and for those involved in the problem, today we take a very important step. Let us take this step together later. I expect that the Minister recognizes the importance of this step and that together we can move forward very quickly in the coming months and years.

Mr. Speaker, the testimony of Ms. Almaci is very important. In fact, it reports how much parents, learning the state of prematurity of the child, are confronted, not only in the short but in the long term, with concerns regarding the development of their child. In Belgium, more than 7.4% of children are premature. One in two premature children experience problems, disabilities during their development. Ms. Almaci has done very well in outlining the physical problems that can expect them, the school problems that the family is facing, etc.

I would like to thank each other for highlighting the progress made in this area. This is a matter that I pay my full attention to. We also granted funds to Cap 48 as part of a research-action for large premature babies. I will have the heart, starting with the House resolution, while, of course, taking into account the available budgetary resources, to bring together experts within the INAMI and the various instances to examine the steps to be taken with regard to the most important elements of the resolution and to regularly report to the Parliament on the progress of the policy in support of premature children and their families.

Le Président: Somebody asks-t-il yet the word? (No to)

Does anyone ask for the word? (Not to)

The discussion is closed.

The discussion is closed.

No amendments have been submitted or re-submitted.

No amendments were submitted or re-submitted.

The vote on the draft resolution will take place at a later date.

The vote on the draft resolution will take place later.

18 Consideration of Proposals

18 Inoverwegingneming van voorstellen