We’re happy to open our blog to our members! This month, we put the EFHPA to our now classic 5 Questions interview.

1. What’s on top of your agenda?

We believe that patients have a fundamental right to patient-centred healthcare that respects their needs, preferences and values therefore EFHPA is the voice of patients in Europe who wish to use and have access to homeopathic treatment as part of their healthcare.

2. Why does your organisation exist?

We exist to raise awareness among policy makers of the value homeopathy can bring to health generally and to work for its recognition and acceptance so that it is included in healthcare policy throughout Europe.

3. What is your biggest achievement as an organisation?

Our biggest achievement is bringing together existing patient organisations to share ideas and experiences but more importantly to work together to help promote and protect the rights of all European citizens who want to access homeopathic treatment. We are also pleased to assist the establishment of new groups. Our aim is to have a patient group in every European country.

4. What is for you the key benefit of your organisation’s involvement in EPF?

Our ethos is very much in line with the EPF. Cross fertilisation and sharing ideals and goals such as patient empowerment are paramount.

5. What’s the main misconception about your disease area?

Many patient organisations are disease related but we represent a system of medicine which covers many chronic illnesses, both mental and physical. One misconception is that it only works on self-limiting diseases. We are aware of the controversy surrounding homeopathy, but the high level of satisfaction and successful treatment outcomes keep patients loyal and returning to homeopaths whenever necessary to maintain their general health.

Contact person:

Camille Bullot, Membership and Stakeholders Relationships Manager

Read below the story of Laura, a young Belgian patient with asthma. She tells about her daily challenges and aspiration for life and as a new member of the EPF Youth Group.

Hello! I am Laura, I am 18 years old and I live in Belgium.

I was only two years old when doctors diagnosed me with ‘asthma’. From then on it has been a rough few years: I had to grow up so fast I could not really enjoy my childhood.

Living with asthma taught several lessons. I learned that relationships with doctors can be difficult; that sometimes you have to prove how ill you really are.  But the most important thing I learned is that you should never ever doubt yourself and always listen to your body.

For almost my whole life, I have been Laura the one with severe asthma, Laura the patient… but never just ‘Laura’ until now.

Sometimes I try to forget that I have asthma because I want to be “Laura” and live like a ‘normal’ 18 years old. As I am stronger than my condition, I spend my days hanging out with friends, going to concerts on my own, going to school and being active in politics. Before, “Laura the patient” could not do all those things, so now I am enjoying life as hard as I can.

I joined the EPF Youth Group because there are many things that need to change in the health system, and – with EPF Youth Group – I can help to make a change.

Right now that is my goal in life, I want to prevent people from having the same bad experience as I had. I already had my first meeting with the Youth Group in Utrecht. I was kind of scared because I’m a shy person. But my first impression of the group was good, everyone was really kind and welcoming. I hope, together we will make the Youth Group more and more visible and hopefully we can make a few changes in the health system!

Contact person:

Valentina Strammiello, Youth Group Coordinator.

The 2016 annual Youth Group Meeting was held over the weekend of 9-11 September in Utrecht, the Netherlands.  EPF staff Valentina Strammiello and Danielle Flores organised the meeting and attended as representatives of the Secretariat.

This was the first meeting for new Youth Group member Laura Arnout (BE). After a welcome dinner on the evening of the 9th, the meeting kicked off the following Saturday morning. The group had a full agenda and began with members reporting back on their advocacy activities from the past few months.

It was an action-packed summer for members Polis Stavrou (CY), Thomas Hough (UK), and Borislava Ananieva (BG), as all three helped organise different patient youth camps in their respective countries. The group then spent the entire afternoon restructuring the roles and responsibilities with the group, which was no easy task! At the end of the first day, the group managed to squeeze in a bit of fun by participating in an “Escape Room” teambuilding exercise.

On Sunday, an election was held and the members elected Marlou Schenk to join the Youth Group Board as their new Treasurer. Then the group held a brainstorming session to generate ideas for their work plan for the upcoming year. In 2017, the Youth Group will produce a video on discrimination and also contribute to the planning and organisation of an EPF young patient leader summer school, with a focus on advocacy training and capacity building.

The Youth Group will continue to actively recruit new members in 2017, particularly focusing on the countries and disease areas that currently lack representation within the group. The Youth Group will also contribute to the upcoming EPF Access campaign, providing their unique perspective as young patients. The goals for the coming year are very ambitious but after this gathering of planning and networking, the EPF Youth Group is highly motivated and up for the challenge!

Contact person:

Danielle Flores, Junior Project Officer

Valentina Strammiello, Programme Officer and Youth Group Coordinator

Because of sensitivities around healthcare issues and the complex environment in which they evolve, ethics and transparency are an absolute priority for patient organisations. But how do you ensure your organisation meets the highest degree of integrity and accountability?

This is the question the eleven participating organisations aimed to answer during the three-day-training organised by the European Patients’ Forum in the framework of its capacity-building programme.

“To be solid, a house needs good foundations. So do patient organisations. They have to be built on appropriate policies and procedures which will ensure transparency and accountability”, said Eleni Zymboulaki from the Cypriot coalition of patient organisations.

Beyond codes of conduct

It is interesting to note that when thinking of transparency, most patient organisations think of cooperation framework with industry and sponsors, when in fact, transparency and ethics have much broader implications.

While codes of conduct and clarity in financial policies are certainly a part of it, transparency also means ensuring your membership is representative and meets legitimacy criteria or making sure you have clear governance and management rules.

Communicating the steps you take to be transparent to your members and external stakeholders is also important. Thus, some of the participating patient associations realised that they already have provisions to ensure the transparency and credibility of their organisations, but that this information is not available on their website or in their annual report.

Reputation, your currency for advocacy

Among the highlights of the training, the session on transparency in advocacy led by Yannik Bendel from the Transparency International EU’s Office: “Reputation is essential currency for advocacy, protect it!”, he said, inviting patient organisations to join the EU transparency register and to publish their lobbying meetings on their website.

When it comes to cooperation with industry, the key principles are independence, mutual respect, and unrestricted funding: “Walk in as equal partners”, recommended Noémi Ambrus who facilitated the training. “Ideally, NGOs’ funding should come from at least four different funding sources”, she added.

On the last day, the participants set individual development goals for their respective organisations for the follow-up phase. “The training was very useful for us as we are currently reviewing our internal policies and procedures”, said Donna Walsh from the European Federation of Neurological Alliances. “It sparked lots of ideas and gave me some food for thought in how we advance this process”.

Beyond improvements for each individual organisation, the meeting aimed at starting a collective reflection on the accountability of patient organisations: “Supporting Patient organisations’ work on transparency and accountability helps the whole patient movement to advance”, concluded Marko Perovic, from the European Federation of Crohn’s and Ulcerative Colitis Associations.