My name is Anna, I am 26 years old and I come from Italy. I also have Multiple Sclerosis (MS).

MS is a neurodegenerative disease affecting the central nervous system causing physical disabilities as well as cognitive impairments. I was diagnosed with MS about four years ago, just after I came back from my Erasmus year in Germany. At the time in my life, I could not have been happier about my future.

Like many others, my diagnosis arrived out of the blue and acceptance has been anything but easy. When you live with a chronic condition you have to deal with many difficulties; the disease does not only affect the people who live with it but everyone around them. Family and friends are 100% involved. Thanks to these amazing people who give me strength, support me in the darkest moments, and push me to pursue my dreams and goals, I have been able to live life as normally as possible.

However, it is still challenging to include MS in my life and it’s very hard for me to accept some limits imposed by the disease. Sometimes I do think that MS is a part-time job! In the last few years, I strove to include the disease in my everyday life, planning every single day and activity according to treatment schedule and medical examinations.

Despite that, I can say that MS is an ‘all-inclusive’ package: on the one hand, the burdens that come with this condition are heavy to digest, but on the other hand opportunities are always around the corner. MS taught me to take life as it comes and be grateful for the little things that it offers. Without MS, I would have never met so many inspiring people who live the disease with a smile, clear determination, and composure. Currently, I am involved in the activities of the national patient organisation and I have also joined the Believe and Achieve programme implemented by EPF member, the European Multiple Sclerosis Platform (EMSP). The programme aims to provide young people with MS with the opportunity to work in supportive environments. Personally, this internship has been the most important professional experience so far and it has been a unique opportunity for me to engage in a dynamic working context.

I believe this is a great example of what is defined as patients’ empowerment: it allows me to take control over what I deem essential in my life: work. I am a strong supporter of the right to employment among young patients, as it gives a sense of social purpose and self-esteem. Unfortunately, this exciting experience is coming to an end but I’m ready for new ventures – and being a member of the EPF Youth Group is certainly one of them.

1. What’s on the top of your agenda?

Political advocacy remains a priority, both nationally and at a European level, on policy development and implementation. But this does not diminish any focus on our other activities, such as our youth engagement through our annual youth leadership camp and involvement in diabetes research, both on a clinical and population level. We also want to reinforce and further cement ties with our members, through regional meetings and the member staff change programme.

2. Why does your organisation exist?

The International Diabetes Federation (IDF) Europe and IDF as a whole exist to be the voice for diabetes. At IDF Europe, we represent 70 national associations in 47 countries across Europe, representing a mixture of patient and healthcare professional organisations. Our strength comes from our members, and it is they who continually provide our motivation to push for change, at all levels. We exist because of them.

3. What is your biggest achievement as an organisation?

Several come to mind. The 1989 St Vincent Declaration, the follow-up Istanbul Declaration of 1999, the establishment of the EU Diabetes Working Group in 2002 (EUDWG), and Policy Puzzle publications (four editions to date), the 2012 EU Resolution, and the continued success of the Youth Leadership Camp.

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

Being part of the wider patient community is as important for us as just focusing on diabetes. Patients’ perceptions from all other conditions are vital if we are to understand their needs, and then go on to advocate for them. EPF therefore provides a higher platform with a greater voice, bringing together all and every disease area.

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

‘Diabetes only affects the old’, ‘It’s because you eat too much (sugar)’, and ‘It’s your /my fault’. Unless people know someone with diabetes, these are the type of comments that arise. People cannot always differentiate between type 1 and type 2 diabetes, which manifest quite differently.  We believe, however, that together with the efforts of our members we’re gradually overcoming the misconceptions by increasing diabetes awareness and knowledge about the condition.

On the first day, the Chair of ENUSP, Olga Kalina, presented an overview of the activities that took place during the past year. Among them were the submission of our Shadow Report for the EU review on the implementation of the UN Convention on the Rights of Persons with Disabilities, and our submission against the Draft Additional Protocol to the Oviedo Convention concerning involuntary treatment and involuntary placement. More information about these activities can be found in the ENUSP Bulletin.

The second day of the seminar was focused on cooperation with other European organisations. We had the opportunity to listen to speakers from Mental Health Europe, the European Patients’ Forum, the European Disability Forum and the European Union Agency for Fundamental Rights. The overview of these organizations’ objectives helped us to better understand where we stand now and set goals for future cooperation and joint action.

The third day was devoted to planning with four different working groups dedicated to ENUSP Strategy, Fundraising, Communication and ENUSP Positions & Representation. Each group had a moderator to lead the discussion, two of whom had previously completed training courses in the areas of Fundraising and Communication) thanks to the kind support of EPF.

We are doing our best to ensure that the enthusiasm of participants during the Empowerment Seminar continues to serve our common goals in the future. People now have a better understanding of the role and objectives of ENUSP, and came up with ideas of how they can better contribute in the future.

Above all, it was a fantastic opportunity to be among peer activists, who share common ground, interests and understand your concerns like no one else.

Why is antibiotic resistance an important public health problem?

Treating infections due to antibiotic-resistant bacteria is a challenge: commonly used antibiotics are no longer effective and doctors must choose other antibiotics to treat infected patients. This may delay getting the right treatment to patients and may result in complications, including sometimes death. Also, a patient may need more care as well as alternative and more expensive antibiotics, which may have more severe side effects.

The European Centre for Disease Prevention and Control (ECDC) places a great emphasis on prevention of self- medication with antibiotics. Why is this such an important case for your organisation?

Several factors have been identified as being associated with the development of antibiotic resistance, and these include self-medication with antibiotics i.e. without consulting a doctor and getting a medical prescription.
Taking antibiotics when they are not necessary, for the wrong reason, possibly without the correct dose and dose intervals and for the wrong duration – all are factors that will contribute to the development of antibiotic-resistant bacteria and will compromise the activity of the same antibiotic later, for another infection.

According to ECDC, what are the main actions to prevent self-medication and antibiotic resistance?

ECDC has identified three main strategies to address antibiotic resistance: first: prudent use of antibiotics, second: good practices of infection prevention and control, and third: development of new antibiotics with novel mechanisms of action is essential, as resistance inevitably builds over time.

Proper use of antibiotics is the focus of the European Antibiotic Awareness Day (EAAD), a European health initiative coordinated by ECDC. Each year on 18 November, it provides an opportunity to raise awareness about the threat to public health posed by antimicrobial-resistant bacteria and to communicate about the importance of proper use of antibiotics.

This year, WHO organises its first World Antibiotic Awareness Week that will take place on 16-22 November. EAAD will partner with this global initiative by promoting proper antibiotic use across Europe, with a European event on 16 November in Brussels and by raising awareness through social media. Join us with #EAAD and #AntibioticResistance.
In your opinion, how patients and patients’ organisations can be involved in prevention of self-medication and antibiotic resistance?

We should all be involved, because we are all responsible. We or our children sometimes suffer infections and therefore we are potential users of antibiotics even though they are not always needed. For example, colds and flu are caused by viruses against which antibiotics are not active: therefore the EAAD slogan “Cold? Flu? Take care, not antibiotics”.

What would you recommend patients with chronic and long-term conditions to do in order to avoid self-medication and prevent antibiotic resistance?

National authorities have specific recommendations for patients with chronic and long-term conditions and these should be followed. For example, if the infection is severe, such as bacterial pneumonia, or necessitated by the patient´s condition, the doctor will prescribe antibiotics.
Certain patients should seek help of a doctor more quickly than other people. If in doubt, always consult a doctor, but do not self-medicate with antibiotics.

I have Juvenile Idiopathic Arthritis (JIA) and I was diagnosed when I was seven years old. JIA is an autoimmune inflammatory joint disease and it affects approximately 1 in 1.000 children every year. Although, with proper therapy some patients are able to lead normal lives, it is considered to be a lifelong disease.

In my case, the disease affects all the large joints and few smaller joints in my body. My symptoms are joint pain and stiffness, fatigue and also occasionally inflammation. This means that I have to consider carefully before doing things like going out with friends or travelling, because my body is constantly battling itself and this takes up a lot of energy.

Here is an example of the tough process that I go through every time I am asked to go out. It was the beginning of September and I had just started my first year at The University of Tartu. The freshers’ week was in full swing and I was asked to go to a party, to meet the people from my course. The day of the party I had to decide: should I go or should I stay in? I chose to go simply because I felt that if I missed it, I will forever be a social recluse. The party was starting at 11 pm and I already felt the need to take a yearlong nap. My knees and ankles were hurting me and made it difficult for me to move. I really should not go but I was really determined so I made myself a strong cup of coffee, took some painkillers, and got dressed.

When I finally got there, I was still exhausted and in pain. I managed to stay there for an hour, but then I decided to leave. I was home just before 1 am. I did not make any new friends, I just chatted with some acquaintances from high school. Furthermore, later I found out that no one from my course was there.

It’s not easy for people with chronic conditions to do everything they would like to, whenever they want to. Their daily schedule is very dependent on how they are feeling at the moment so it is difficult to make promises to attend an event or just simply meet up. It is very important to be supportive of a friend with a chronic condition. We want to socialise, but our bodies often hinder our ability to do so.

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.

For a long time, doctors were the experts in healthcare. They knew what’s wrong with the patient and there was little to no argument about their decisions and advice. But now this is changing, and some may fear it, because it questions what so far has been unquestioned.

Even though it might seem a little challenging from a doctor’s perspective, it is invaluable to empower patients. Active patient empowerment means that doctors acknowledge that patients can be experts as well. They are the ones living with the disease and they are actively searching for information on how to deal with their condition, so they often know better what is going on.

That is a new situation for the doctors who are trained to know as much as possible about the human body and it takes self-confidence to admit that a patient knows more about their specific condition than they do.

Enabling patients to deal properly with their disease and treatment makes them more independent and it reduces unnecessary visits to the doctor. Empowerment comes through good communication but this is rarely taught in medical education – it is time to change that.

If you are still asking why patient empowerment matters, it is because of the significant role patients play in healthcare. Looking to future, it is vital that patients are able to manage their own health and teach others to do so. This will help not only them, but   doctors and other health professionals and indeed the healthcare system as a whole

I believe empowered patients can make a difference for the sustainability of healthcare systems.

1. What’s on the top of your agenda?

Our top priority at the moment is patient safety. As exclusivity rights for some biologics medicines are expiring, similar biological medicines,  so called biosimilars, are being developed with some already available on the European markets.

We want to ensure that patients receive accurate and unbiased information concerning these latest Inflammatory Bowel Disease (IBD) treatment options and we have launched a BAB (Biologics and Biosimilars) survey to address this issue. We are also working with key decision makers to ensure that patient safety and the patient perspective is included in any debate concerning patient safety and medicines regulation.

2. Why does your organisation exist?

Our organisation exists in order to represent the over 2.5 million people in Europe who have Crohn´s disease and Ulcerative Colitis (collectively known as Inflammatory Bowel Disease). We want to give people with IBD a louder voice and higher visibility in Europe and we want to improve their quality of life and ultimately find a cure.

3. What is your biggest achievement as an organisation?

Our biggest achievement as an organisation is to be recognised as the voice of the IBD community, not only in Europe but worldwide. As IBD is sadly becoming more and more prevalent, we are being approached by many IBD associations or informal groups of people living with IBD. From as far a field as New Zealand, Argentina, Puerto Rico, South Africa etc., they contact us with requests to assist them with raising awareness, sharing information and advocacy work and to live up to our motto “United We Stand”.

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

Being involved with EPF allows us to better achieve our main goal, which is giving people with IBD a bigger voice. We believe that collaborating with other disease groups will give us more strength as a group and will allow us to be more effective in terms of lobbying and awareness raising. Marco Greco, our Chairman, has been on the EPF board for a number of years and is currently the EPF Treasurer. He was also elected through EPF as one of the first patient members on the European Medicine Agency’s Pharmacovigilance Risk Assessment Committee (PRAC).

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

Even though Crohn´s disease and Ulcerative Colitis are not rare diseases and are on the increase, there is still very little knowledge about the disease. One main misconception is that the disease is caused by “nerves” (stress, emotions etc.) and is often confused with irritable bowel syndrome (IBS).

It´s a chronic, invisible disease with no cure so far and people with IBD often face prejudice or little understanding for their frequent or long absence from work place, education and/or social life.

The European Federation of Crohn’s & Ulcerative Colitis Associations is an umbrella organisation representing 29 national patients’ associations from 28 European countries and 3 associate members from outside Europe. EFCCA aims to work to improve life for people with IBD and give them a louder voice and higher visibility across Europe and beyond.

http://www.efcca.org/