The Models of Child Care Appraised (MOCHA) project held its General Assembly meeting in Rome on the 20 October 2016. The EPF Youth Group Chair, Aneela Ahmed tells us about her experience as a participant.

The MOCHA project meeting and General Assembly turned out to be a very interesting experience. In the backdrop of the scenic and historic roman ruins proved to be a fitting setting for the first General Assembly. The current research is broken down into work packages that help to organise and categorise the research for an easier dissemination into different languages. The General Assembly helped to humanise the researchers for stakeholders allowing engagement of country agents, stakeholders and External Advisory Board (EAB) Members which included the voice of young patients through a designated member of the EPF Youth Group.

Many issues were raised by the youth delegate concerning issues surrounding transition, the current chart and what is included as essential factors relating to child health, the current primary health system and how it may or may not fit the needs of children across Europe. We welcomed colleagues from Australia and America to help advise on specialist issues related to public health whilst continuing the dialogue between existing EAB members on how we could contribute towards promotion and finding connections for research.

It was particularly insightful to hear the recommendations from colleagues who were well versed and informed through the research and knowledge they had through their organisation however, it must be noted that it was imperative for YG member presence. Simply, due to the insight and issues that could go amiss when discussing primary health care for children and young people when direct consultations cannot be implemented.  It was a successful meeting and the future of this project for both the MOCHA team and our young patients looks a little brighter because of it.

Antimicrobial Resistance, the resistance to some antibiotic drugs is a very hot topic currently raging – and rightly so – in view of its alarming proportions. Mary Lynne Von Poelgeest-Pomfret, from the World Federation of Incontinent Patients shares on our blog her very personal and touching story.

It is a story very close to home as it relates to my husband, and I think we, patient, carers, health professionals, can all learn from it.

It all began in the autumn of 2015. My husband went to our GP and was diagnosed with an acute urinary tract infection for which he was prescribed a course of broad spectrum antibiotics. No change. Symptoms persisted. A second course of antibiotics. Still no change. By the third visit, weeks later, it was finally decided to do a urine culture to test. This revealed antimicrobial resistance to two well-known bacteria: helicobacter pylori and morganella morgani.

Without going into the details, my husband was reluctantly referred to the academic teaching hospital in our region. A treatment plan was quickly set up, involving a surgical intervention and three weeks of antibiotics administered via an IV. The plan was then to spend the first few days post-operatively in the hospital and subsequently continue with the treatment at home.

To summarize, the surgical intervention and antibiotic IV administered in the hospital to combat the AMR were correct, but the actual methodology and implementation protocols within the hospital failed.

The surgical intervention led to complications which were incidentally never explained in the hospital. The IV treatment was fine in the clinical setting but there were few, if any, adequate mechanisms in place to enable a smooth transfer to the home situation. The onus was entirely on the patient and in this case it was me who had to arrange for the continuation of the IV antibiotic treatment at home.

The mechanisms for the transfer of the IV treatment to the home situation were just not in place and the hospital didn’t really wish to know. It was only thanks to endless running around (on my part), persistence and resolute handling of the situation by the wonderful specialized homecare nursing team – nothing but praise and admiration – that treatment at home could be continued.

But then the following to cap it all.

The dosage in the IV containers as prescribed according to the dosage as administered in the hospital setting went completely wrong. The local pharmacist supplied the antibiotics in the wrong dosage.

It was only thanks to the ‘beady eye’ of the specialist homecare nurse immediately after release from hospital that the situation was rectified, and only after many phone calls between the homecare nurse, the hospital and local pharmacists.

In the end, the various hiccups and errors were rectified and despite the extremely cumbersome and onerous situation both for my husband and myself, the future is looking optimistic as far as the AMR is concerned.

But there are many lessons to be learnt:

• From the outset, the flippant attitude towards the antimicrobial resistance needs to be addressed. AMR should be taken seriously and treated accordingly.
• The communication channels between the various parties and hospital protocols need to be tightened up. The checks and balances certainly need to be in place when it comes to medical prescriptions, and also the transfer of care from the clinical setting to the homecare environment.
• Finally, a patient should never be placed in the precarious, onerous and utterly irresponsible situation with which we were confronted.

The lesson for the patient and the carer is therefore to be steadfast: demand the right treatment and do not take a no for an answer. Much of the hardship, frustrations and inadequacies of the system could have been avoided had we been more resolute and indeed better informed. My husband would not had had to undergo a very invasive surgery and AMR treatment if there had been a dedicated treatment plan right from the outset.

So the message is clear:

Speak up and take note of all parties involved! As a patient, be resolute and know what is best for you. Communicate and question so that errors can at least be minimised, and if in doubt… ASK!

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!