Announced by the President of the European Commission Jean-Claude Juncker in his annual address before the European Parliament in Autumn 2016, the European Solidarity Corps aims to offer volunteering and work placement opportunities to young people around Europe. The European Patients’ Forum is ready to support this flagship initiative, with the provision that it becomes a beacon for inclusion and equity.

On 12 April 2017, the European Solidarity Corps Stakeholder Forum brought together national and European representatives of civil society organisations, authorities and other stakeholders to discuss the key issues related to the future development of the European Solidarity Corps (ESC). Over 27,000 young people have signed up so far.

The European Patients’ Forum (EPF) welcomes the initiative: patient organisations have a long tradition of working with volunteers – in fact most patient organisations including EPF members operate thanks to volunteers. In that sense, we see in the European Solidarity Corps the chance to spotlight the extraordinary contribution of patient organisations’ volunteers, young and old, which is too often overlooked.

If implemented well, we see the European Solidarity Corps as a double opportunity for the patient community: first, young patients will become involved as mainstream actors and potential volunteers, which could support their skills-building, transition and integration into paid work. This could also be transformative in overcoming prejudice and stigma.  The second opportunity is that patient organisations in Member States – national, regional or local ones – will benefit from more volunteers as they are often very short-staffed and poorly resourced. The European Solidarity Corps could thus make patient groups more visible as “primary targets” for volunteering.

However, without due vigilance, there is also a risk that this programme paves the way for exploitative free or cheap labour. This risk is even greater for young patients, as they are considered more vulnerable and face additional discrimination in “real employment”. Therefore, we believe that a clear definition of quality volunteering and of quality work placements, traineeships and apprenticeships should be at the core of the ESC. It should also be clear that this is not about shifting service delivery to the “third sector” and non-governmental organisations, in a way that allows governments to eschew their responsibilities. This would result in a very negative perception of the ESC and potentially undermine civil society’s central advocacy role.

Another crucial point for EPF is the need to ensure access to the European Solidarity Corps to young people from disadvantaged backgrounds or with specific needs. Such an initiative should be a beacon for inclusion. A specific budget should be allocated to cover costs for personal assistance or extra-support that could be needed for the young person.

When it comes to the operationalisation, we believe that there should be clear and sustainable funding mechanisms. The funding of the initiative has to be clarified by the European Commission, and should not be squeezed from existing programmes. Indeed, the implementation of ESC should add to and complement current initiatives, and not in any way endanger or overshadow their success.

Finally, we should not forget the huge issues facing Europe in the healthcare sector, and notably the persistent inequalities in access to health and social care. Although we acknowledge the ESC’s potential added value for patients and citizens across Europe, the European Patients’ Forum would like to see as much willingness to act on highly political and profoundly human issues such as access to health and social care and the implementation of the Sustainable Development Goals, which the European Union should spearhead, together with the Member States.

“A searing pain like a red-hot poker piercing through your eye that prevents you from remaining still or from lying quietly in a darkened room” – this is how patients describe Cluster Headaches.

Affecting up to 4 in 1,000 people, the prevalence of cluster headaches is similar to the incidence of Multiple Sclerosis and Parkinson’s Disease. Despite this, it is still under-recognized and under-treated. In an effort to raise awareness on this chronic illness among policy-makers, the European Headache Alliance and the European Headache Federation organised a meeting in the European Parliament on 21^st March 2017. The date was not a calendar coincidence: the number of attacks peaks at the equinox.

Unlike migraine which is more prevalent in women, cluster headache mainly affects men. The word “cluster” refers to a period of time lasting weeks or months.

“The worst thing is that you are not taken seriously”, said Miguel Angel Pascual, cluster headache patient and delegate from AEPAC Spain. “People tell you things such as ‘just have an aspirin’, so after a while you understand it is useless to keep explaining your situation. I have lost 5 jobs because of cluster headaches”.

“Beyond the need to raise awareness, we need to promote the connection between cluster headaches and disability”, said MEP Helga Stevens (ECR, Belgium). “We also need to see how we can overcome the barriers this condition represents to employment, by promoting flexible working arrangements, for instance”.

The claims put forward by patients with cluster headaches are reminiscent of that made by the European Patients’ Forum within the framework of its Access campaign. “There are not enough new drugs for Cluster headaches patients”, deplored Pr. Paolo Matelletti. Moreover, according to the European Headache Alliance survey on access to treatments performed recently, when they are available, these medicines might not be reimbursed, depending on the country of treatment.

Encouraging availability and affordability of healthcare products and services is one of the five major areas of the EPF Access campaign. “Action is needed both at European and Member state levels, where a lot of the levers for change are”, concluded Audrey Craven from the European Headache Alliance.

For more details, please visit:

• europeanheadachealliance.org
• ehf-org.org/last-news/

Contact details:

Elena Ruiz de la Torre, European Headache Alliance President

Email: elena@europeanheadachealliance.org   Tel:  + 34 639 66 99 65

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

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.