A lovey article written below by member organisation, PAH (Patiëntenvereniging Aangeboren Hartafwijkingen), of our AGM held in Milan March 2024. The article has been translated from Dutch into English. The original article in Dutch are uploaded as images in this post. Thank you to Roy Boere from PAH for such a wonderful overview.
ECHDO Annual General Meeting 2024 ... LIKE ECHO?
Hi folks! Well, English was the language spoken during the ECHDO Annual General Meeting 2024, on Friday 15 and Saturday 16 March this year at the IRCCS Policlinico San Donato Hospital in Milan. Not necessarily a piece of cake for this writer, the English language. I was glad that I had managed to read some English books beforehand. For those who don't know, ECHDO stands for European Congenital Heart Disease Organisation. (So no echo or wishing wells here.) ECHDO is the organisation of which the European patient associations for people with congenital heart disease (chd) can be members. So is the PAH. Working through those memberships for congenital heart disease (chd) patients of all ages, ECHDO gathers knowledge from parents of children with an chd and from adult patients to achieve common goals. Their vision is to share information, knowledge and experience to improve access to the best possible care and treatment for all people with congenital heart disease in Europe. As more and more children with an chd are reaching adulthood, the members of ECHDO include parent support groups and patient associations as well as support organizations and patient associations with a focus on adult congenital heart patients (GUCHs) and of course also support groups or patient associations that exist for both children/parents and adults.
ECHDO has a rotating chairmanship and, retiringly, chairman was our PAH chairman Just Deinum. On Saturday, at the end of the two-day meeting, Just stepped down and handed over the chairmanship to Lene Osmundsen from Norway. Lene comes from the Norwegian adult patient association Voksne med medfødt hjertefeil (VMH), (Then indeed I prefer English for me).
HOW ARE YOU DOING ON DAY ONE?
The theme of this year's meeting was 'Understanding European patient groups and our place in the global community' (congenital heart disease). Patient representatives from the following countries gave substance to the two days by means of presentations; Bulgaria, Germany, the Netherlands, Finland, Norway, the United Kingdom and Iceland and, maverickly, the United States. Organisations from the following countries were also represented: Cyprus, Italy, Croatia, Malta, Slovakia, Spain and Switzerland.
Our chairman kicked off on Friday afternoon. This by welcoming everyone and giving a short introduction to the two conference days. After this, the vice-chairman of the ECDDO, Rob Nicoll, took over. Rob is president of the Somerville Heart Foundation, the British patient association for adults and young people with congenital heart disease. Rob turned it into an interactive event. The post-its flew through the room. The idea was that each country would describe whether it is active in a particular area. Some examples of the questions were; "Does your country collect data on CHD results? Does your country collect data on the number of patients born with an CHD?', 'Does your country collect data on the well-being of CHD patients (such as employment or mental health)? Are there laws in your country to protect the educational, economic and social rights of CHD patients?', 'Is surgery possible in your country or do you have to travel abroad? Is there surgical aftercare available in your country?', 'Are there educational campaigns in your country to combat stigma and promote awareness? Is there access to disability benefits or social services in your country?', and 'Is there psychological or mental health care in your country to support patients? Is there access to specifically trained care for adults with an CHD in your country?'. During this presentation, among other things, it was discussed that attention to the psychological, social and societal well-being of people with a congenital heart defect and their parents/caregivers in many countries is underexposed. This is also true in the Western European countries and was reflected in almost every subsequent presentation.
WHOOPEE!
After this, the afternoon continued with four consecutive American speakers. Amy Verstappen ..., no, not 'related to' she assured me later, is 'president' of *GlobalARCH. Amy talked about the work of this organization and the usefulness and importance of connecting and making our voices heard worldwide as a community of people with an CHD. Following Amy, Sydney Philpott-StreiƯ gave a presentation about the *Ollie Hinkle Heart Foundation. Ollie Hinkle Heart Foundation's mission is to address the unmet needs of families with a child with an CHD while transforming the future of pediatric cardiac care. They seek to achieve this by uniting families and clinicians through community, by providing barrier-free access, by disseminating life-course care, by connecting the technical and human sides of care, and by promoting education, empowerment, and advocacy. Sydney also touched on some facts. Two of them stood out to me in particular. These are things that I hear more and more often in people with an CHD. The first is that not only in poor countries but also in the 'Western world', many of us are out of the picture when it comes to medical care or never get it at all. The latter, on the other hand, is especially true in those poor countries.
The other issue that struck me as Sydney mentioned is that a lot of people, both children, parents and adults with CHD, experience psychological and/or social problems as a result of the heart condition. In particular, the latter, the psychological, social and societal consequences of living with an CHD, deserves more attention in my opinion.
After Sydney, Meghan Didier and Tyler Sajdak spoke. They are both active for *Fontan Outcomes Network. The Fontan Outcomes Network (FON) is a lifelong learning network made up of a community of patients, families, physicians, and researchers. Together, they are trying to make the results available to all people (in the United States) aƯected by a single-ventricular condition. They do this by using, connecting with each other, data, people, and centers to facilitate research, drive improvement, and drive innovation. Meghan is a young woman with a so-called Fontan circulation who told a passionate story about her work for FON and her fledgling motherhood. Tyler is a young medical student with HLHS and also a Fontan circulation.
Tyler talked enthusiastically about the Single Ventricle Patient Day, which is now an annual event in the US. A day that originated on Tylers' initiative, for patients with a single-chambered heart that is mainly about meeting each other, sharing stories, exchanging experiences and motivating and supporting each other in the beautiful and sometimes diƯicult things in life. Meghan's story touched me the most these two days. Now emotions are not strange to me, but during a presentation experiencing that it is related to my tear ducts ... And so the tears in my eyes of emotion and enthusiasm, that had never happened to me before. How did that happen? Well, first of all, because Meghan, slightly emotional herself, first introduced herself. And told me about her not too easy path to motherhood. And how intensely happy she is with her daughter and motherhood.
As not a mother herself, but a parent of a now 23-year-old daughter Lynn and Fontanner herself, this part of her story struck the first sensitive chord. In a positive way! I realized again, that certainly the first nine months after conception give little physical eƯort or even problems for men ... Apart from getting married at 8 months and carrying the mother-to-be over the threshold hchdha. Also remembered was the terribly tense moment immediately after Lynn's birth; "She doesn't have a heart defect, does she?!?!." The second part of Meghan's story was an eye-opener for me and incredibly motivating and inspiring. Actually, Meghan gave the most important message I took with me from Milan. A message that I hope many of you can and want to take to heart! Sit back and relax...
MEGHAN SAYS
Meghan emphasized the importance of engagement. Involvement of patients in developments that aƯect their care in a broad sense. After all, there is no one more
dedicated to that care and the developments in it than patients and parents/caregivers themselves? Her conclusions based on her own experiences and those of active fellow experts:
Creating collaborative partnerships between patients, parents/carers and caregivers is truly achievable with the active involvement of 'leaders' of the chd
community who are willing to stand up for this.
It is critical to recognize that patients and parents/caregivers possess strength and expertise beyond their healthcare experiences.
Feedback from patients and parents/caregivers drives quality improvement. As partners , patients and parents/caregivers and healthcare professionals identify
improvements together.
You don' t need medical training to make a diƯerence in shaping patient-centered care.
We, people with congenital heart disease, are so much more than our condition. We have so much more to oƯer than their patient experience. In addition to experiential expertise, we have many more qualities, knowledge and expertise that can be used when it comes to improving care for people with congenital heart disease. Not everyone is given the opportunity to explain understandably and passionately how useful, meaningful, important advocacy by ourselves is, as Meghan does. Meghan described some of the successful examples of collaboration in that Fontan Outcomes Network. Collaboration between patients, parents/carers on the one hand and doctors, researchers, chd centres on the other. The examples of successful collaboration that, cautiously, are or seem to be applicable to our Dutch situation and your patient association, the PAH, are listed below:
Involving chd patients and parents/caregivers in determining what research should focus on;
Co-compiling research questions;
'Designing' the ideal patient journey;
Working to ensure that the ideal patient journey becomes as much of a blueprint as possible for care pathways, life-course care in hospitals
I will come back to this at the end of this article, because we think this is such a fascinating and especially important topic.
MEER WHATS'UP!
After this, Johanna Kober from Germany spoke via video link. Johanna said she had been the mother of a daughter with a congenital heart defect for 11 years. Through her own history, she knows how a diagnosis, even during pregnancy, can turn life completely upside down and that after the initial shock, a thousand questions and uncertainties can often arise. Johanna guides parents and children on their journey from the moment of diagnosis, to give hope and guide them back to their self-eƯicacy. In order to be able to support parents with her own experience and more outside of it properly and professionally, she has followed a training to become a 'resilience trainer' and coach and guides families in a holistic way during what she calls their on their heart journey. In addition, she gives workshops, in which you can participate live or by watching the video recording. Johanna also makes podcasts that can be found online or via her own website.
At the end of the day, the participants dined together in a kind of hip community restaurant called Bob Food and More. This was offered to us by the AICCA, our Italian fellow patient association.
HOW ARE YOU ON DAY 2?
After ECHDO chairman Just had kicked oƯ this second and final day, the Saturday, of the meeting, the presentation of a plan on how ECHDO could develop in the coming year, followed. This plan was written by Lene Osmundsen and Emilie Mikalsen from Norway, based on a questionnaire that they distributed to the aƯiliated patient associations. Lene is an chd patient (and mother, and mental health psychologist) and Emilie is a nurse in the emergency room and has undergone a heart transplant as a result of her congenital heart defect. Lene represents the 'section' of adults of the Norwegian Association for people with an chd and Emilie the 'section' for children/parents. From the replies to the questionnaires, they identified the following targeted objectives for the coming year:
1. Strengthening connections within ECHDO, i.e. between the various affiliated organisations;
Remain an arena for member organizations to share concerns and ideas
Increasing the number of contact moments to 4 annual meetings (with 30
minutes allotted time for member discussion?)
2. To strengthen the position of ECHDO as an international serious organization, by:
Increased visibility through stable online presence
Participation in external conferences, campaigns and research engagement
3. Creating and launching one ECHDO campaign;
Suggested topic: Raising awareness about psychological well-being among CHD patients
4. Bonus: Fundraising. Sponsorship in particular was seen as a good additional option. Edward Callus, who is also a psychologist at AICCA, promised to take up
this 'bonus objective' right away.
This is followed by a presentation about the Bulgarian Association for the Heart of Children. The presentation on what this association does was given by Tsvetoslav
Naydenov and Ivaylo Bachkov who both have a congenital heart defect. The association was founded in 1990 in the city of Sofia. It unites people who sympathize with the problems of children and young people with heart disease: parents, pediatric cardiologists, psychologists, lawyers, and anyone who is willing to provide selfless help to this not insignificant part of Bulgarian children and their families. The transition to an open democratic society in the country was accompanied by the rise of social phenomena such as poverty, unemployment and alienation between people. This necessitated the creation of the "Children's Heart" association, whose mission is to support children who have been placed in a disadvantaged position due to their illness, Tsvetoslav said. It is well known that cardiovascular disease can lead to long-term isolation and a number of psychological problems that seriously impede the social integration of children and their families.
The main goal of the association is the maximum improvement of the quality of life of children with heart disease through highly qualified modern treatments, psychological and legal guidance. A good practical example of the activities of Heart of Children was the 'guest house'. This is a house where families with a child with an CHD but also young people with an CHD can stay even longer periods of time. The guest house is mainly intended to allow families and individuals to catch their breath during or after a hectic period. This house is run entirely by volunteers who, in part, live in the house next door.
We are now almost at the end of these two days and last but not least a call to find partners who want to help organize a European youth camp. This call was made by Katja Laine from the Finnish Association for Children and Adults with Congenital Heart Disease, Sydänlapset ja -aikuiset ry and Frida Björk Arnardóttir from Neistinn, Iceland, who supports families of children and young people with heart defects. Some European countries, including Iceland and Finland, organize a youth camp every few years. Here, young people from all over Europe and their supervisors are welcome to take part in a suitable active programme for five days to a week. Requirements for participation are that you speak English, have a heart defect and are a minor (the last 2 of course do not apply to the supervisors). This year and the coming year are 'covered' and there are two organizing countries. Katja and Frida's appeal is two-sided; On the one hand, the question of which country(ies) wants to take over. On the other hand, the offer to participate as a supervisor during the upcoming youth camp in Finland, if you are seriously thinking about organizing such a camp in your country in the next year. The latter is now short notice (camp in Finland from 24 to 29 June). Interested parties can contact Katja or Frida via LinkedIn or Facebook or via me.
Last but not least, Mirela Dezman from A Big Heart for Little Hearts announced an expression of interest to host the 2025 AGM in Croatia.
THE END!
Coming back to the aforementioned involvement of patients in developments that affect their care in a broad sense. Broadly speaking, two things are necessary for this. On the one hand, something is needed on the part of the professionals. Namely, an active open attitude regarding actual and active cooperation with patients (organizations). On the other hand, this requires something from us, patients and parents/caregivers. And by that I mean time and, above all, manpower. Actual commitment as a volunteer or otherwise to give substance to that patient participation. Of course, we, the PAH, seek cooperation with others, patient initiatives, who are active in the field of congenital heart defects. And there is already a, still small, group of volunteers who are occasionally or with greater regularity active on behalf of their fellow patients or parents/caregivers. However, if we really want to get a structural place in the design in the Netherlands, changes and innovations in our chd care, then more hands and voices are needed. People who want to and can be active for this purpose, structurally or every now and then, are therefore very welcome!
