From Lisbon to Vienna

1 – APACHE activities linked with EACH

Those aspects of APACHE activities figure in the EACH report.

2 – Communication tools for APACHE and the Charter

- A new booklet to explain the goals of APACHE

To improve the impact of APACHE actions and to get the EACH Charter to be better known we decided to renew our communication tools.
A French association named « Passerelles & compétences » searches for other non-profit associations professionals with specific and high level skills who agree to work for free on precise and limited mission.
Thanks to this new contact we connected with a very talented marketing director who worked with us for free. He understood very well our wish to avoid sensationalism in our style of communication.
A new booklet was printed as well as a four-page paper explaining in a more detailed way the history of children rights in hospital, the philosophy of APACHE, the ways APACHE acts to implement the principles of the EACH Charter in France and our connections with EACH members.

- A poster : the Charter for children

The EACH poster we used was not efficient enough as a communication tool. We worked on a short version of each of the 10 points which could be easy to read and understandable by a child. A poster was then made and a number of professionals requested this poster to display it in their wards.

3 – Search for funding

Like many other non-profit associations, the lack of funds is our main problem. Looking for funding is a professional and time-consuming activity.
The government does not accept to subsidize the day-to-day work of the association. We only receive support (public and private) for specific projects. We are managing as well as we can but thus the future of the association is never guaranteed.

4 – Implementing the Charter

- Accreditation (certification) of hospitals

All hospitals (private as well as public) have to go through an accreditation process every five years. The criteria for children units are quite good : information, informed consent, presence of parents, pain treatment are mentioned.
But there is often a double–talk from the hospital. In spite of real improvements, in the everyday life of a child in the hospital there is a discrepancy between what is written, announced and what is really done. We hear about it through the letters, the emails, the phone calls we receive from parents.

- The position of our Ministry of Health (DHOS)

In 2005 we tried again to convince our Ministry of health to endorse our Charter. The whole negotiation lasted two years to only obtain three meetings … !!!
The answer was very clear: the Ministry of health could endorse the Charter except for point 2 (Parents should not need to incur additional costs or suffer loss of income) and point 6 (children in adult ward). For the other points of the Charter they were ready to endorse it.
In order to show their goodwill, following another nine months we had a new meeting and the Ministry of health proposed a new version of the Charter. Out of our 10 points, minus 2, they wrote a Charter in 13 points and asked us to agree to their version.
We refused arguing that our Charter was a whole, had to be considered as a project for the future and couldn’t be curtailed the way they did. The text from the Ministry of health mentioned at the beginning that this Charter was inspired by the EACH Charter.
Meanwhile started in France the campaign for presidential elections and we don’t know what is going to happen with this text and if the persons we were in contact with, will still be there in a few weeks…… ! This development is an illustration of what we call an official double-talk.

- The Charter on the walls of pediatric units, on the hospitals websites

Many pediatric units, hospitals ask for the Charter and have it posted on the wall. Hospital websites have the Charter mentioned with the text but often without our signature.

5 – Contacts with associations, professionals, parents

A lot of parents as well as professionals still believe the Charter is an official text and call or write to APACHE to complain when several points are not being respected ! ! ! This is for us a good source of information about the degree of implementation of the charter.
The general public is now quite informed about the Charter but the misunderstanding about the status of the Charter remains quite frequent. We explain our work in France and in Europe and most of our correspondents react in a very supportive way. Associations we are working with know now the importance of the principles of the Charter and call us when a problem in this field arises.
We have regular contacts with the associations’ member of 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. Those associations became aware of the problems children and parents in hospital have to face after the report we wrote about children right to health in France (cf. EACH-Report 2007).
We are following-up on our contacts with the Parents associations of children with cancer about informed consent, clinical trials, ethics and pediatric medicines.
The main part of our everyday work is to answer letters, @mails or phone calls from students in nursing school looking for information for their memoir (thesis) for final school examination.

6 – Improving our website

Our website specialist has implemented a new tool which allows us to improve our website. We launched a new inquiry to the nearly 600 pediatrics wards in France. The aim is to have the latest information about each pediatric unit. We will then be able to assess the improvements made.
This new tool allows us to directly publish (post) on the web the new information as soon as we have checked its reliability. We intend to add several new tools such as a forum, access to our bibliography.

7 – « Pital des étoiles » a comic strip for children

This comic trip tells a history of children in a hospital. The hospital is a science-fiction hospital and the children are coming from various planets.
We wanted to put in this comic the fears and fantasies of the children towards hospital, doctors, nurses, injections and so on. The history has a happy ending where the children become heroes saving the hospital.
The designer came a few days in the hospital to understand the atmosphere of a pediatric ward. He wrote the history and did the illustrations. A small working group controlled each step of the procedure with advice from children, parents and psychologists.
With the support of the Ministry of health and of a drug company (Sanofi-Aventis) we were able to accomplish this project and we already have had a lot of demands from pediatric wards all over the country and in Belgium. 10 000 exemplars of this comic strip have been already distributed by APACHE. The drug company has distributed this comic strip to general practitioners and pediatricians.
The opinions are clear-cut. A majority of the adults don’t like it at all (too worrying, too dark, too far from reality, they don’t like robots …) and the children (mainly boys) do like it and are asking for other comics strips or for new adventures of the same children. We had a presentation of this comic strip at my hospital with hospitalized children and they were quite positive toward « Pital des étoiles ». They seemed happy to discover a booklet with a hospital adventure. None of them seemed afraid.
Those very different points of views between adults and children are quite troubling.

8 – Igloo: an educational and play concept

This project took us 6 years to achieve: financial and technical problems (it is a prototype) as well as slowness of the administration of the hospital to accept the implementation. The aims of the « igloo » are to give a safe and intimate space to the child to play.
On the « operating table » you have a doll or a bear with operating room shirt, anesthetic masks, syringes. The fear scale and the pain scale are shown and the child can play with it. You can also put to sleep a small character named « Tipoulou » by turning a knob.
On the external wall of the « igloo » you find pictures of the different steps the child goes through when having a surgical procedure under general anesthesia (consultation, blood test, arrival in operating room, induction, recovery room).
The volunteers are asked to invite parents to look at the pictures with the child and to suggest to children to play in the « igloo ». The « igloo » has been opened very recently and we don’t have yet enough observations of the way children use it and appreciate it.

9 – In the future…

We have new projects going on and hope we will be able to present them at the next EACH Conference.

APACHE