EACH activities from Lisbon to Vienna

  • Category: Seminar Vienna - Austria 2007
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EACH European and International activities of EACH are shared by several members of the Committee and they wrote a specific report on thoses activities :

  • Margreet van Bergen: One room delivery and Parents in NICU;
  • Giuliana Filippazzi on HPH (Health propoting Hospitals) Network;
  • Hanne Sieber on the NGO groups working in Geneva.

This report will give a general view of our work to distribute our Charta and help its implementation in European hospitals.

1 – Why Vienna

In Lisboa, we asked EACH associations to tell as soon as possible which one was willing to organize the next Conference. The answers we received came mainly from countries who already had organized previous conferences.

It is important for EACH members to meet on a regular basis, as direct contacts play an important role in exchanging our experiences and in the progress we all can do. For this reason it was decided to have a Committee meeting and an enlarged General Assembly in Vienna this year. This meeting in Vienna, which is at an easy reach for most of our Eastern European guests will also give us the opportunity to meet those new persons coming from the new EU countries. It will be of great interest for us all to listen to their demands and their experience.
We wish to thank our Austrian members for their support in the organization of this meeting in Vienna.

2 – and Helsinki in 2008?

Shortly after deciding to hold a meeting in Vienna came from Anika Schantz (NOBAB Finland) the following message:

I am happy to inform you that NOBAB in Finland is ready to organize the European Conference in Helsinki 12-14th September 2008. This will be a joint congress together with the Nordic countries.

We all are very pleased with this proposal and will start to prepare the next conference as soon as possible.

3 – Turnhout (Mai 2005)

Margreet van Bergen proposed to the Committee members to attend a Conference on « Family-centered maternity care » held by Celeste Philips, in Turnhout (a small town in the flemmich part of Belgium). Celeste Philips is a midwife who introduced the concept of single family-room for delivery. This concept, developped in the USA can be extended to Intensive care unit for newborns and babies.
In the Netherlands, Margreet is now working on this important concept which is matching the resolution we took in Lisbon in March 2004 about newborns (cf. specific report).

4 – Orlando (Florida - January 2006)

In direct link with our participation to the Turnhout Conference, four members of EACH (Hanne from Switzerland, Margreet and Jaimie from Holland and myself) attended the Annual Gravens Conference in Orlando about Physical and Developmental Environment of the High-risk Infant (all the expenses were supported by the national associations and personnal funds).

At this conference (about 400 participants doctors and nurses mainly americans and a few others coming from Canada, Great Britain, Belgium, Switzerland, and Netherlands) the various problems raised by single rooms for High-risk infant (architecture, design, noise, parental presence, costs, organization of the medical and nursing team, training, family support, prevention from risks, etc.) were developed in high quality scientific reports.

I was too late for EACH to make a presentation and we brought attention to our Charter with a banner and bookmarks inserted into the syllabus of all participants.

The Gravens Conference on the Physical and Developmental Environment of the High-Risk Infant takes place every year in January. Some of the subjects treated are related to our Charter. You can find a lot of information on their website.

5 – Pediatric medications : towards a European regulation

As you might know a lot of children’s medications are used without having been tested and without Notice of Compliance (AMM : autorisation de mise sur le marché). Most of the time adult medications are given to children without testing their effciency and tolerance in this specific population. As a result of this lack of controled trials a lot of complications appeared in children treated by those medications.
The pressure of French parents associations having a child suffering from cancer or leukemia was quite strong. Other associations joined.
I proposed this point to be discussed in 2005 in Turnhout among the Committee and EACH agreed to support this fight in favor of a European regulation for pediatric medications. EACH added a comment (below) to developp the importance of informed consent of children and adolescent. I worked with the group of associations and scientific society who where actors in this action. Mrs Grossetête, a French MEP, conducted the work with the European Parliament.
EACH and the following associations (listed below) signed a statement asking the European Parliament :

- To develop incentives and obligations for both private and public sector researchers in order to bring them to conduct studies to adapt medications to children on the pediatrics forms
- To plan measures to encourage the development of news forms on already existing paediatrics medicines

AJD : French association of Young having Diabetis - Association française des Jeunes Diabétiques
EACH : European Association for Children in Hospital
Eurordis : European Organization for Rare Diseases
Isis : Member of the National Union of Parents Associations having children with cancer or leukemia
SFP : French Society of Pediatrics
Leem : French organization of drug companies
Les Entreprises du Médicament, organisation représentative des entreprises du médicament opérant en France

Parents and children have been waiting for years to have a European Legislation for Paediatric Medicines.
In spite of the opposition of some MEP and especially lobbyist from the generic drug companies, the European regulation was adopted in September by the European Parliament.
For any new medication (or an already known medication but without an adapted pediatric form such as syrup or suppository) which could have an interest in pediatrics the pharmaceutical companies are now obliged to make the trial also for children (those companies didn't do those trials before because they are difficult and very expensive for a very small market).
If the medication gets the authorization the company has 6 more months of exclusivity for their product (the companies asked for 2 years but the associations refused and 6 months seemed a reasonable deal).
The generic companies strongly opposed this regulation as it is against their financial interest.
I found this achievment interesting for two reasons
- for children having to be treated of course (????)
- for EACH, as it was the first time that our signature appears in some work done with the European parliament. The associations involved in this action, are carrying on the work as it is important to respect ethical conditions for those trials.

COMMENTS ON THE EUROPEAN COMMISSION’S PROPOSED “REGULATION OF MEDICINAL PRODUCTS FOR PAEDIATRIC USE”
[No 1768/92 Directive 2001/83/EC and Regulation (EC) no. 726/2004

EACH supports the proposal to encourage the clinical research into children’s medicines.

However, when the subjects of such research are children and young people, rather than adults, a number of points require particular consideration. In the main (???) these refer to informed consent, which may be defined as: “a process by which a trial subject confirms his or her willingness to participate in the trial after being informed of all aspects of the trial that are relevant to the subject’s decision to participate.”

To achieve this end consideration must be given to the following points:

  1. It should not be taken for granted that parents will be the prime participants in the process of gaining informed consent. Children and young people who are capable of understanding the situation should be fully involved in the consent process as well as their parents or care givers.
  2. This requires that the patient information form is written in simple language, so that it can be readily understood by a child or young person.
  3. All aspects of the trial should be explained by a person with knowledge and experience of working with children who ensures that the tasks to be undertaken are fully understood, as well as the possibility of pain, discomfort, risk and benefit.
  4. Every effort should be made through questioning to ensure that the child or young person clearly understands what is going to happen should he agree to participate in the clinical trial.
  5. In coming to a decision the child or young person’s wishes should be given due consideration and the parental decision should not be allowed to override that of the child.
  6. Where the child is too young or lacks the intellectual capacity to make an informed decision, parents should be advised that they are giving consent on behalf of the child and not in their own right and that they should consider that decision entirely from the child’s point of view.
  7. Ethics committees considering applications for research on medications for pediatric use must include at least one member with pediatric training and experience. None of the above points is meant to limit the development of clinical trials for children’s medications. EACH considers that these points should be incorporated into the Regulation both in the interest of children and young people generally and so as ensure compliance with the United Nation’s Convention on the Rights of the Child (Articles 17, 18 and 19).

June 2, 2005
Coordinating Committee of EACH

Peg Belson, Ph.D. h.c. Action for Sick Children, UK, Dr. Sylvie Rosenberg Reiner (Coordinator), Apache, France , Marie-Thérèse Minne, HU, Belgium, Teija Schroder, Suomen Nobab, Finland, Julia von Seiche, AKIK, Germany, Ragna Marinosdottir, Umhyggja Nobab-Iceland, Mary O’Connor, Children in Hospital Ireland, Francesca Bennici, ABIO, Italy, Dr. Giuliana Filippazzi, Italy (senior Coordinator), Margreet van Bergen, Kind en Ziekenhuis, The Netherlands, Anna Soderholm, Nobab Sweden, Hanne Sieber, Kind & Spital, Switzerland

As a consequence of this action, I am now invited as EACH coordinator to give EACH position about informed consent of children and adolescent, their participation to clinical trials and the ethical consideration we should discuss.

6 – EURONET

The last general Assembly of Euronet took place in Brussels on the 22nd of Septembre 2006. I participated in the name of EACH (as well as for the COFRADE – a French coalition of associations who are acting in favor of the rights of children on the basis of the CRC – Convention of Rights of Children).
Each time I attend a meeting of Euronet I emphazise the importance of sick children rights in and out of Hospital as those are always forgotten by all the member organizations of EURONET.
Those organizations are big and strong associations acting against pornography, children soldiers, sexual abuse and mistreatment, violence, child prostitution, etc.
EACH is the only organization having an expertise in children in hospital. It is quite difficult to explain to those associations that sick children (as well as handicaped children) is a very large population in Europe and that their specific rights have to be considered and implemented.
In the last Euronet report « What about us ? Children rights in the European Union, next steps », for the first time, EACH slightly appears in the footnotes of the chapter about Child Health. Our Charter is not even mentionned in the text.
In my opinion, it is far from enough and we have to go on lobbying on the subject with Euronet.

7 – EUROPE

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As you can see below, Franco Frattini, Vice-President of the European Commission, initiates a new European policy about Children rights including health.
As EACH is the only NGO with expertise in rights of children and their families in the health care system and as a member of Euronet, we might get the opportunity to participate in this process.

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8 – COFRADE and rights of children to health

The 20th of November 2005, was the anniversary of the signature of the CRC by France.
The French roof organization COFRADE decided to write a complete report on children rights in France. As a member of the board I wrote in the name of APACHE a separate report focusing on the child’s right to health. I made a quite complete work using the EACH charter.
In this report I pointed out the areas in the French health care system where the implementation of the child’s right to health (and the EACH Charter respectively) can and should be improved.
Most of the themes in this report are not typically French and could also apply to Europe. It needs of course some more work but EACH could use it.
The booklet is written in French (76 pages, A5 Format), but in many aspects the situation is the same in many European countries (i.e. it could be used as a model in other European countries), and this survey will certainly help us also in any future negotiations on EU level.
For this reason I brought an English translation of the French version that member organization can use.

9 – ESAN

IAC, one of our member organization, organized in Lisbon, in March 2006, a congress on the issue of two books : a guide of Portugese hospitals done on the model of the French “Guide de l’hospitalisation des enfants” and a guide for treatment of pain in childhood, translated from the French “Guide du traitement de la douleur de l’enfant”.
With another member of APACHE, I attended this congress. It gave me the opportunity to meet the President of ESAN : European Social Action Network, Léon Dujardin. Léon Dujardin seemed interested by the EACH work.
As President of the nework, he invited me, as EACH coordinator to the general Assembly of ESAN which was held in Brussels on July 1st 2006.
During this general Assembly, I was given the opportunity to present the EACH Charter and to explain the importance of this charter for the rights of children in Europe.
I also mentioned the difficulties we have to bring the subject to the European level. Most of the participants to ESAN are working in the poverty field and in “solidarity economics”. For those reasons they have a real sensitivity to children rights problems in difficult condition.
The General Assemby of ESAN proposed to EACH a privileged partnership on the subject of children rights in hospital. ESAN has become recently an accreditated NGO at the European Council with a member of ESAN board (Christoph KUSCH) participating to the group of accreditated NGO.
The European Council has closed relationships with the European parliament and acts often as an expert for raising problems. Christoph KUSCH, from EASAN, is asking for subjects and reports to be brought on the agenda of the European Council.
The ESAN proposal seems positive and interesting as an opening to a new way of lobbying at the European level and I think that EACH should respond positively and go on with ESAN.

10 – The new EACH website

Thanks to Margreet, Paul Kleingeld modernized and transformed our website. Having gone through the national websites of the members organizations, I was quite surprised, to see how few of those have our Charter on their website.
As there will be a link between the EACH website and the association ones, I think it is important to present the EACH Charter, in all the language in which it was translated, on all the member association websites.

11 – Reprint of the EACH information brochure

Hanne was quite efficient and managed, in spite of a lot of difficulties, to make a reprint of “The EACH Charter & Annotations” in English, German and French.

10 – An EACH presentation in Seattle in July 2007

I submitted a presentation at the 3rd International Conference on Patient-and-Family-Centered Care: Partnerships for Enhancing Quality and Safety, July 30-August 1,2007 which will take place in Seattle, Washington.
This presentation was accepted. Here is the summary :

The concept of partnership in care with families and the rights of sick children in hospitals in Europe

S. Rosenberg-Reiner

EACH (European Asssociation for Children in Hospital) is an umbrella organization for currently 17 non-governemental, non-profit associations in 14 European countries who are working towards the implementation of the EACH Charter. The EACH «Charter for Children in Hospitals», adopted in 1988, describes in ten points the needs and rights of sick children before, during and after a hospital stay. To assist in the implementation of the Charter « Annotations to the Charter » have been prepared in 2002. The 10 principles of the EACH Charter are in many respects in line with corresponding articles in the UN Convention on the Rights of the Child (CRC). The rights and needs of children in hospital include family centered care, partnership with parents, accomodation for parents, the right to appropriate information and support for parents and children, the right to informed participation in the decision-making, the right to be cared for in specific children (or adolescent) units with trained staff able to respond to the varying needs of children from 0 to 18 years, continuity of care, protection from pain and stress, treatment with tact and understanding, as well as the right to play, recreation and education also in hospital.
The challenge EACH members had to face was to find suitable ways for implementing children’s rights in hospitals in the various European countries with completely different health care systems and services and different economic conditions and constraints.
The EACH Charter is available in several European languages, and it has become widely used and accepted in the meantime. It is the goal of EACH to have the Charter principles incorporated in national health laws, regulations and guidelines in all of Europe.
The national associations united in EACH have among their members parents and all types of health care professionals. Collaboration with hospitals and health care institutions has proved to be an important key to success. Thanks to this strategy important results have been achieved in several European countries.

Now I have to write a complete presentation. I will be glad to get your suggestions to make it as interesting as possible with all our different experiences.

11 – Norvegian group

For several years NOBAB Norway doesn’t participate and doesn’t pay its contribution to EACH. But at every meeting, one of the NOBAB member comes with a message from NOBAB Norway.
The question raised by Norway is always the same : how does EACH spend the money and what is the interest for the national activities of NOBAB Norway to join EACH ? The financial statement of EACH, the annual report, the minutes of the meeting were always given to the present NOBAB messenger like to all other members associations.
It is difficult for EACH to accept those constant critics when NOBAB Norway has not participated to our common work for the last few years.
The participation to a European project is a long term work. Ideas spread slowly and the construction for a Europe respecting sick children rights in and out of the hospital is worth the work we are all doing. The new European countries are interested in our experience and our expertise.
Ethical problems are now rising and have to be discussed. Participation to EACH as a European project cannot bring instant result for the national problem we all have to face in our own countries. You can’t expect an immediate national result by participating in EACH as a European project.
Participation to EACH is a choice: the richness of contacts, exchanges of experiences, analyse of results gained in other european countries, are worth the work we are all doing and the money we are giving to EACH.
NOBAB Norway may think differently and we have to respect their point of view of not joining EACH.

I am sure that this Vienna meeting will be another positive experience for all the participants and allow us to enhance our contacts and the sharing of our various experiences.

Sylvie Rosenberg-Reiner
EACH coordinator
April 2007

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