About seventy Portuguese patient and public health organisations and a number of individual key opinion leaders– including two former Portuguese Health Ministers – have signed a petition requesting more citizens’ involvement in the development of health policies.

The petition asking for the adoption of a “Charter for Public Participation in Health” was presented to the public at an open Conference held at the Portuguese National Assembly on Tuesday 18 October 2016.

“Our objective is for the Parliament to take over this Charter and promote citizens’ participation in health through legislation“, said Sofia Crisostomo from the patient organisation GAT, representing people affected by HIV and AIDS, leading the project.

From contributing to the national health plan to representation in advisory boards – 10 priorities for more participation

The document, elaborated within the project “More Participation, Better Health”, identifies ten areas where there are needs to be more patient participation, such as the elaboration of the national health plan. The Charter also demands a greater representation of patients and users in the advisory boards of the regional health authorities and health centres groupings (ACES) and national ethics councils. “The health centres groupings already foresee the participation of users in advisory boards, but it is residual. We want a better balance in terms of representation of users in the Boards of these health centres“, Sofia said, adding that the same applies to hospitals, where in most cases the users are left out.

Patients point out the absence of a collaboration culture as the main barrier to users’ involvement

The presentation of this petition was accompanied by the publication of the results of a survey on public participation in health decision-making carried out among more than 600 citizens and 78 patient organisations and other associations active in the field of health.

About half of the organisations believe they have no influence in health policy-making, and less than 10% report having been consulted by Members of the Parliament or by the parliamentary Commission on health. Finally, more than 80% of the organisations report that in the cases where there has been some kind of involvement, these contacts happened on the associations’ own initiative.

The absence of a collaboration culture between civil society organisations and public institutions, as well as the excess of bureaucratic procedures in the health system, are pointed as the main barriers to involvement in decision-making.

“Decision-makers need to realise that patient involvement is not a favour they are doing to civil society organisations, but a process through which they gain the insights of true health experts, the patients themselves.”, argued Camille Bullot from the European Patients’ Forum at the Conference.

The petition has already collected half of the 4000 signatures necessary for the Charter to be discussed in the plenary session of the Portuguese Parliament, the Assembleia da República.

Contact person:

Camille Bullot, Membership and Stakeholders Relationship Manager

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.

1 in 4 adults will experience mental health problems. EPF member Mental Health Europe set up a campaign to end stigma and raise awareness of mental health.

‘Each of us is part of the solution – Let’s end mental health stigma together’ so goes the tagline of the awareness-raising campaign run by Mental Health Europe (MHE). Focusing on 10 myths about mental health problems, MHE has developed a campaign to debunk prejudices and stereotypes by providing simple figures and facts. The campaign will also encourage people to share their own story with mental health to inspire others to openly talk about it. “Our aim is to change people’s minds and misconceptions about mental health problems, which are way more common than we think”, says MHE’s Communications Officer Ophélie Martin.

The appealing tagline ‘Each of Us’ recalls that each of us may experience mental distress at some point in life. In this regard, figures show that 1 in 4 people may encounter a mental health problem during their lifetimes, and 1 in 5 adolescents is affected by at least one psychological problem in any given year.

The objective of the campaign is to make people understand that having mental health problems does not mean that one cannot or should not participate in life and society. In fact, what MHE aims is to achieve a Europe where people with mental health problems live as full citizens and have full access to appropriate services and support. To this end, the campaign is a long-term project and is expected to evolve throughout the years. Hopefully, with the involvement of policy makers, stakeholders and civil society, goals such as implementing raising-awareness trainings in schools, universities and businesses will be achieved.

Finally, being a European initiative, ‘Each of Us’ complements already existing national anti-stigma campaigns and gives to the topic a different dimension. A European perspective will be particularly useful to encourage more exchange of best practices and dialogue at European level.

EPF supports the campaign and hopes that joint efforts will help to change minds across Europe and to improve the lives of people with mental health problems.

If you want to know more about the campaign and get involved, visit the website. Some of the campaign’s material is already available in different languages. You can also support the campaign only by sharing your own picture and using the #Eachofus hashtag

For more information about Mental Health Europe click here.

Contact person:

Sara Gayarre, Communications Intern.

For three months Laurence Woollard represented the EPF Youth Group within our Secretariat. Now that his time in Brussels comes to an end, let’s look in the mirror and ask him about his experience, in a video interview.

On the 30^th of June, the EPF secretariat will say goodbye to its EPF Youth Group representative, Laurence Woollard. From learning experiences to lifelong memories, Laurence tells all in a small video interview. Watch it on our Youtube channel, and let us know what you think!

Every month we put the spotlight on one of our members. Today, we are delighted to catch up with Dystonia Europe , which recently joined EPF.

1. What’s on top of your agenda?

 By Connecting People for Dystonia accross Europe we aim to:

• raise awareness
• spread information
• promote education & research
• support lobbying & advocacy
• add value to the work of the national associations

We focus our work on three different projects which give the opportunity to connect face-to-face or digitally with members and everybody with an interest in dystonia: The D(ystonia)-DAYS – our annual 3-day-conference; Jump for Dystonia –  our dystonia awareness campaign; MyDystonia – a digital diary for dystonia patients.

2. Why does your organisation exist?

 Dystonia is a neurological movement disorder causing continuous muscle spasms which force affected parts of the body into abnormal postures or lead to twisting and repetitive movements. About half a million Europeans are affected. No cure is available and treatment is limited to minimising the symptoms. As the umbrella organisation for 18 national dystonia patient associations from 21 European countries, Dystonia Europe’s vision is better quality of life for dystonia patients and ultimately a cure.

3. What is your biggest achievement as an organisation?

The last four years we were the grant holder of a COST-funded project: The European Network for the Study of Dystonia Syndromes, bringing researchers and clinicians within the field of dystonia closer together. The main successes were:

• Three Dystonia Training Schools – 3-day events, with grants to participants to support the cost of attending.
• Short Term Scientific Missions (STSMs) – 40 grants were awarded to young scientists, to allow them to study for short periods with dystonia experts in other countries.
• The formation of an online registry of clinical and genetic data.

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

Being involved in EPF is in line with our mission ’Connecting People for dystonia’. We hope we can contribute to the work of EPF with our experiences within the field of movement disorders and we believe our members can benefit and learn from EPF’s large network.

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

Dystonia is a little known brain disorder, not only to the public but also amongst the medical professionals. Raising awareness can help combat the stigma and isolation felt by people with Dystonia, it can also be the key to earlier diagnosis and treatment.

On Friday 20th May 2016, youth leaders from the EPF and European Multiple Sclerosis Platform (EMSP) co-hosted a workshop at the European Youth Event (EYE) in Strasbourg.

The main objectives of the workshop were to raise awareness about the importance of employment for young people with chronic conditions and to promote workplace adjustments.

Simon Duncan, a representative from the Boingboing Community Interest Company based in the UK, shares his thoughts and perspectives on the session and how he has overcome stigma as a wheelchair user when applying for jobs…

Why did you attend EYE 2016?

I was interested in seeing how people from different cultural backgrounds approach issues, such as bullying and youth unemployment.  I wanted to share my knowledge with others and try to find solutions to common problems together.

Why did you register for our workshop?

Unemployment for young people with chronic conditions is a huge issue in the UK and across the world. Take a university graduate with a chronic condition and/or disability for example; it is really demoralising that they find it almost impossible to enter the workplace at a level equivalent to their education and experience because of their health.

I wanted to gauge the extent of unemployment for those with chronic conditions throughout Europe and see if, by sharing experiences, we could come up with some potential solutions at a policy level to make the hiring process fairer and more accessible.

Have you experienced stigma when attending a job interview and/or in the workplace? How did you overcome this?

Yes, I have experienced stigma on different occasions during the hiring process. There was one interview in particular where I was clearly rushed on a test and my verbal answers were overlooked, which impacted on my overall confidence and performance. When I requested feedback, the HR representative was highly dismissive and disrespectful.

I overcome experiences like this in different ways. Firstly, I tend to find work mainly through referrals and connections. If people already know me and my skills, then they are more likely to hire me. Secondly, I do not work a standard 9am-5pm job. This enables me to circumvent the common issues that come with having a disability because I can choose my own hours, such as attending medical appointments.

Lastly, when I consider potential employers, I look to see if they are an equal opportunities employer or a member of an employment scheme, such as Two Ticks (when employers in Great Britain agree to take action regarding the employment, retention, training and career development of disabled employees).

Once I get into a role, I work as hard as I can to show that hiring me was a good decision and any stigma, whether covert or overt, was unwarranted.

What recommendations would you make to employers and decision-makers to improve the situation?

I would like improved transparency within the interview process. It should be overseen by a senior member of staff that has no vested interest in who is hired. They could write a report that details why one person was recruited over the other and make this freely available to all the candidates.

Changing the perception of young people with chronic conditions and/or disabilities is vital. Instead of viewing this as a weakness or potential cost to the company, employers should consider it as diversifying the work force and having staff who are highly adaptable and resilient; a result of living with a chronic condition and/or disability.

I would also like further clarity on the equal opportunities policy from different employers to find out if it is just a hollow gesture or if they truly deliver on their supposed ideals.

To download the full workshop report, please click here.

Contact person: Valentina Strammiello, Programme Officer, valentina.strammiello@eu-patient.eu