Trust is a vital ingredient to build successful relationships, both personal and professional ones. This becomes particularly significant when it comes to my Haematology consultants and the difference between suffering from a bleed or not.

I trust my consultants to provide me with good clinical care, tailored to my specific needs, whilst ultimately giving me the freedom to take responsibility for my own health. Whereas the choices were made for me in paediatric care, at 26 years of age I am now able to shape my own therapy with support and guidance from my specialists.

My Haemophilia can be debilitating at its worst but I believe I am best at knowing my body’s limitations and this information can be vital to the health professionals. Patients should be encouraged and feel empowered to intervene proactively in their health care, not just to influence the decision-makers but become the decision-makers wherever possible.

I know that I do not have to deal with my condition alone. As well as my family, I can reach out to others like the UK’s Haemophilia Society and the EHC, who are there to listen and campaign on our behalf. We want and need to be involved with our treatments and to demand improvements for our future. Surely, if you put the patient in the heart of services, then you can ensure a best quality of care is delivered to all.

I am so encouraged by EPF’s Patient Empowerment Campaign; by promoting patients’ rights to choose how they are treated, there can be better understanding between patients and health professionals and a move towards working in harmony.

This year, I had the chance to return for the second time as Young Gasteiner to the 18^th European Health Forum Gastein. This years’ programme was highly linked to key themes within the EPF work programme and on issues that are important to us as a patient organisation, like inclusiveness, universal access to healthcare and patient empowerment.

What did we discuss?

Access to innovative treatment, patient empowerment, equity and solidarity as well as value of innovation were high on the Gastein agenda. Multimorbidity (the occurrence of two or more chronic conditions in one person) was also the focus of one of the sessions and I was particularly pleased to see that patients with several chronic conditions were invited to share their expertise. I wrote a blog on this session which I invite you to read here.

The refugees’ crisis was also highlighted in one of the session as refugees often arrive sick from their harsh journey, however, they receive scarce support by healthcare services.  I was happy to see many NGOs stepping up to this issue, committing to treating this as a health crisis and calling on decision makers in health to play a more prominent role in this issue.

Sharing EPF work with other Gasteiners

My colleague Camille, was also present for the first time at this event. “The Young Gasteiners’ programme brings together two communities who work intensively on changing healthcare policies, but from different perspectives: young researchers and innovators and young policy influencers. I’m glad to say that after a few days spent together, we spoke the same language.”  Camille said.

Camille also had the opportunity to present her winning poster on patients’ rights in cross border healthcare and EPF’s work on that topic over the last few years. She explained that “when the Directive on cross-border healthcare came into force in 2013, there were fears that the Directive would lead to a flow of patients traveling across Europe to benefit from healthcare. The objective of my poster was to show there is no such flow of patients so far, and generally, the ones traveling do it because treatment is not available in their home country!”

More information on the outcomes of European Health Policy Forum Gastein here.

Pictures: Laurène Souchet (top), Camille Bullot, presenting her poster (bottom)

1. What’s on the top of your agenda?

At the moment we are focusing on increasing the Federation’s awareness and on promoting the Federation as the patients’ voice in Cyprus.

Our number one priority is the recognition of the indisputable rights of patients and their participation without any restrictions in health-related discussions and decisions. This is especially important for us in Cyprus in order to guarantee proper and timely access to medicines for our patients. Our work is also crucial to ensure that patients have the choice between all the different therapeutic options and treatment available for them.

2. Why does your organisation exist?

Our raison d’être is to ensure that patients have access to holistic, patient-centred and equitable health and social care by promoting collaboration and building synergies among patient’s organisations and stakeholders.

In order to do so, the Federation coordinates the work of its member associations and represents them in all decision-making bodies, where it advocates for the protection of patient’s social and physical rights.

3. What is your biggest achievement as an organization?

We just submitted a project proposal entitled “I CARE” in the context of ERASMUS+ KA2: “Cooperation for Innovation and the Exchange of Good Practices- Strategic Partnerships”.  The project’s basic aim is to develop open educational resources (MOOC- Massive Open Online Course) and training courses in order to provide caregivers with information and communication technology (ICT), social and basic patient care skills.

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

Through our involvement in EPF, we have gained expertise and tools to advocate for patients’ rights.

We are also grateful for the great support EPF provided us in the framework of its capacity-building programme. Thanks to this support, we developed our first strategic plan. We believe this is an important big step to achieve before pursuing our other goals.

5. What is the biggest misconception about patients with chronic diseases in your country?

Society’s lack of knowledge about chronic diseases leads to negative behaviour towards them, and even racism. As far as the authorities are concerned, they still too often take decisions without consulting with the patients.