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5 Questions to: SAFE, the Stroke Alliance for Europe

From time to time, we like to put the spotlight on one of our members. Today, we are delighted to catch up with SAFE, the Stroke Alliance for Europe, who recently joined EPF.

What’s on the top of your agenda?

SAFE is a non-profit-making organisation that represents a range of stroke patient groups from across Europe. SAFE wants to drive stroke and the response to it up the European political agenda and see growth in activity and strength of Stroke Support Organisations in each country.

Why does your organisation exist?

The European Parliament in June 2003 addressed the urgency of tackling the prevention of stroke at EU level to avoid unnecessary deaths and disability in an important workshop. The conclusion was that European governments must act to prevent stroke without delay and a 10-point action plan was drafted. In this 10-point action plan a key goal was to set up a European Patient Group for Stroke. This led to 6 patient groups  forming SAFE, the Stroke Alliance For Europe in October 2004, since then we have grown the number of organisations to the current 34 members.

What is your biggest achievement as an organisation?

Since we were formed, 14 years ago. SAFE is now an alliance of stroke support organisations from over 30 European countries. It has taken a lot of time to develop respect from the medics but we are actively cooperating with the largest organisation of stroke professionals, ESO, after signing a Memorandum of Understanding in 2017. SAFE published the Burden of Stroke Report in May 2017 in the European Parliament, providing insights on the stroke care pathway across 35 European countries. This year, we presented the Stroke Action Plan for Europe 2018-2030, in partnership with ESO, first at ESOC 2018 and then in the EU Parliament.  The Plan includes recommendations for all points along the stroke care pathway. Without SAFE the recommendations and discussions on support and care after rehabilitation has finished would not have happened. SAFE pushed for a new domain of consideration Life after Stroke which has been woefully neglected. At the same time, we are tirelessly working on patient empowerment, by developing an eLearning tool on setting up and growing SSO’s and on advocacy training for our growing number of member organisations. The focus is on training future stroke advocates for achieving better prevention strategies, diagnosis and treatment for stroke, as well as aftercare of survivors and their families.

Our plans for 2019 include an ambitious project of assessing the Economic Burden of Stroke. SAFE already signed a contract with Oxford University to deliver a research report on this topic. The report will be presented in October 2019.

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

One of our slogans it ’Together we are stronger’ and we truly believe in those words. SAFE believes that only in cooperation with other organisations we can achieve our goals and get more attention from all stakeholders and decision makers. We were particularly impressed on the EPF document on the value of Patient Support organisations.

What’s the main misconception about your disease area?

I guess the main misconception is that stroke is an old people disease and it won’t happen to you. Few people understand it’s the second biggest cause of death in the world, and is linked to at least 80% of dementia for example. Meanwhile, stroke is responsible for 9% of all deaths each year in the EU and it is also the largest cause of severe adult disability. Total costs for stroke were estimated at €64 billion across Europe in 2010 and yet it is hugely under-funded in comparison to other chronic conditions. Recent modest improvements in acute care mean that more people are surviving stroke, but with impairment, with the consequence being that we have a major health economic and social burden catastrophe waiting to happen. This will severely impact all EU countries, but especially those where inequalities in stroke healthcare are already known.

Making personalisation possible

Personalised care offers countless benefits to people living with multiple long-term conditions. When shaped around the individual, personalised – or person-centred – care empowers people to manage their conditions, prioritising the needs and wants that are most important to them.

Personal health budgets are one way of achieving this personalisation. They give people the choice and control to shape their care and support around their personal goals and desires.

Recently there has been a spike in interest in personal health budgets amongst policy makers in the UK. In March 2018, Secretary of State for Health and Social Care Jeremy Hunt acknowledged they were key to enabling people to have control over their healthcare and live better lives. NHS England is aiming for 50-100,000 people to have a budget by 2021, and a consultation on extending the amount of people who have a right to a budget closed this month (June 2018).

Engaging the voluntary sector

In the latest report from National Voices, NAVCA and Volunteering Matters, we share lessons from two years’ of working with voluntary organisations and Clinical Commissioning Groups across England, looking at the delivery of personal health budgets.

We learnt that engagement with the voluntary sector was essential for enabling people to have better experiences of personal health budgets. Voluntary organisations have the knowledge, expertise and reach into local communities that cannot be duplicated by statutory bodies.

However, for the potential of personalised care to be realised, a cultural shift is required. This is no easy task, and it needs support on all sides: from health commissioners, statutory bodies, voluntary and community organisations and indeed the people who stand to benefit most: people using health services.

Working in collaboration

When health commissioners and the voluntary sector work in collaboration, people’s care improves. For example, in Warrington, the Clinical Commissioning Group and voluntary sector are working together to provide more personalised care and support at the end of life through personal health budgets. These budgets have enabled 83% of people to die in a place of their choosing, against an average of 26%.

Personal health budgets are not for everyone, and it’s important to remember this. Personalising care means doing what is right for the individual, which by definition will vary from person to person.

However, they offer promising outcomes that prioritise the wants and needs of the person, rather than the system. They empower individuals, allow them to take control of their care and enable them to be active citizens in their communities. For these outcomes to be possible, the voluntary sector has a pivotal role to play.


World Kidney is held on the second Thursday in March every year. This year it was on March 8 and the topic was Kidney Disease & Women, to highlight the impact of kidney disease on women’s health.

The risk of developing Chronic Kidney Disease is about the same for men and women, but if women get at the earlier stages of their life it could mean more challenges and risk factors during a possible pregnancy and may also have risk of reduced fertility.

When the kidneys are fresh and in a good health-situation, they have four key roles in our health:

  • they get rid of excess water and toxics,
  • regulate the bloodpressure,
  • produce red blood cells
  • keep bones strong.

When the kidneys start to fail, it is a «silent» disease and most people do not understand they got a kidney disease. Until they do. That is why we try to inform people and stimulate them to test themselves for Kidney Disease. This test is very easy to do, only a blood and urin check and you will get an answer.
We know that about 1 in ten people have some degree of CKD, and in elderly people the numbers increase. People at 75 could nearly half have some stage of CKD.

This disease could not be cured, but if it is discovered early, the process could be delayed, or in a few cases even stopped. If you got to the most serious stage, the only way to survive is throught dialyse or transplantation. This is a very expensive treatment and will vary very much between countries.

That is why the patients associations and global partners try to raise the awareness connected to Kidney Disease. Patients Engagement means to create a partnership between patients, patients families and doctors. To learn from each others in order to make the best health outcome.

Alzheimer Europe: two new publications, involving people with dementia

Alzheimer Europe (AE) is delighted to present its two new publications: A comparative report on “Standards for residential care facilities in Europe” and a discussion paper called “Dementia as a disability? Implications for ethics, policy and practice”. As always, involving people living with dementia in its work helps AE ensure it continues to reflect their needs and views. “Nothing about us without us!”

The comparative report, coordinated by Project Officer Ana Diaz, in collaboration with AE’s national members and various national experts and with input from members of the European Working Group of People with Dementia (EWGPWD) and their supporters, provides an overview of the existing care standards and regulatory requirements residential care facilities in Europe need to meet and addresses key areas that impact on people in residential care: Physical environment; Staff providing care; Health and social care; End-of-life care; and Abuse and use of restraint.

It highlights some important oversights on how dementia is currently addressed or neglected in frameworks and standards in Europe. However, it also highlights examples of good practices in these areas across Europe. Some of the key issues that still need to be considered at policy level are the formulation of clear and legally binding standards with specific considerations of the needs of residents with dementia, appropriate training for staff, awareness raising and the provision of high-quality accessible information to residents, families and staff about their rights and what they should be able to expect from care.

AE hopes this comparative report will be useful in improving the standards of care and the quality of life of people with dementia in residential care.

For further information please contact Dr Ana Diaz:

About the discussion paper: Article 1 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD, 2006) states, “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.” This clearly applies to the situation and experience of many people with dementia. The paper, which was authored by a working group of 11 experts in the fields of disability, dementia, law, anthropology, psychology and policy from across Europe and chaired by AE Director for Projects Dianne Gove, takes this as its starting point to explore the possible implications for ethics, policy and practice of accepting dementia as a disability.

It was extremely important for AE to ensure that the experience and perspectives of people with dementia were reflected in this paper. The entire EWGPWD was therefore involved right from the start, first by asking them about their perceptions of disability and dementia and then via a one-day face-to-face consultation and subsequent involvement in the development of an accessible version of the full report. Two members of the EWGPWD, Helen Rochford-Brennan and Helga Rohra, were also members of the expert ethics group

For further information please contact Dr Dianne Gove:

You can purchase both publications via

EUFAMI Celebrates ‘Home’ – Art for Better Mental Health

EUFAMI celebrated its 25th anniversary in November by organising an art exhibition to promote better mental health.  A total of 25 artists from across Europe participated in an exhibition in Brussels framed under the theme of ‘HOME’.

We chose this theme because we believe that ‘Home is where the heart is’, not only a physical place of bricks and mortar, but also an environment where we feel comfortable and accepted, among people who have our best interests at heart.

Over the past 25 years, we have been constantly lobbying at an EU-level for a process of ‘deinstitutionalisation’, which involves getting people out of care facilities and hospices and back within the family and larger community.  We believe that this process should be accompanied by measures to support family and informal carers so they can have access to the kind of services and financial support they need to adequately care for a loved-one.

Recent work, such as our paper on family perspectives on services for persons living with schizophrenia as part of the European Brain Council Value of Treatment project, helped us to collect data and to formulate a socio-economic response to the treatment of serious mental ill health.  We have also provided input into the EU-Compass for Action on Mental Health and Well-being and collaborated in the consultation process for the EU’s landmark European Pillar of Social Rights.

We believe carers are today’s invisible workforce and we will continue to speak up for their rights in policy circles and as part of our larger network on Facebook and Twitter.

In preparation for the 25th anniversary celebration, we contacted artists within our network of members across Europe and we were humbled by their response to share not only their art but their life stories. Orna Levy speaks about her brother Gil Levy, and his dialogue with great artists from the past and his attempt to reconcile himself with the internal voices in his head. British artist and activist Dolly Sen recounts in detail the impact of abuse on her life’s course, and Italian painter Lorenzo Ludi explains how he found his voice through painting. We were also in touch with EUFAMI’s founding mother Gusta Froonickx, who spoke about her life’s ambition to change the way society deals with mental health, who is also channelling her creativity through painting.

More information

You can watch the teaser of the event and visit EUFAMI’s website for more information.

IDF Europe celebrates World Diabetes Day in the EU Institutions!

World Diabetes Day was celebrated on 14 November all around the word, and EPF member IDF Europe organised several activities in the European institutions to bring the topic and their advocacy work to a higher policy level.

At the European Parliament in Strasbourg (13-16 November)

World Diabetes Day is always an important period for our high-level advocacy efforts towards Members of the European Parliaments (MEPs), and this is why this year we decided to organise our annual afternoon debate at the European Parliament in Strasbourg.

Hosted by MEP Roberta Metsola (EPP, Malta) and chaired by MEP Bogdan Brunon Wenta (EPP, Poland) our annual afternoon debate was articulated around the 2017 theme “Women and Diabetes” and was a great success with the participation of six MEPs.

IDF Europe was well represented through the presentations on the role of women in the improvement of health outcomes by Sandra Bršec Rolih (IDF Europe Board Member), on Diabetes in pregnancy by Prof Nebojsa M. Lalic (IDF Europe Board Member), and on our initiative Mobilising Parliamentarians to Act to Prevent, Care and Treat diabetes (IMPACT) by Prof Dr Sehnaz Karadeniz (IDF Europe Regional Chair). During the debate, Rachel Portelli (IDF Europe Youth advocate) and Cristina Petrut (IDF Europe Board Member) also shared their personal story as women living with diabetes.

At the end of the debate, seven MEPs signed our diabetes pledge – a powerful statement on diabetes and available in seven languages – joining that way the 30 members of national and European parliaments who already signed it.

In addition, 270 blood glucose tests were performed by our French member association Fédération Française des Diabétiques from 14 to 16 November at the Parliament.

At the European Commission in Brussels (13-15 November)

For the second consecutive year, IDF Europe was invited to organise a lunch time presentation at the European Commission (EC). The intervention “Prevention of Diabetes in the modern era of affluent society and economic constraints” by IDF Europe Board Member Professor Konstantinos Makrilakis took place on 15 November and attracted more than 30 staff members from the European institutions. It was also live streamed to the offices in Patten.

Thanks to our positive collaboration with the EC, we also organised a blood glucose testing at the Directorate General Environment office, at the Berlaymont (the landmark of the EC in Brussels) and at the Atrium over a period of three days (13-15 November). More than 500 blood glucose tests were performed over that period and this event provided us with an excellent window to educate participants about diabetes, its prevention and complications.

Furthermore, promotional flyers on risk factors of Type 2 Diabetes were given out which allowed us to promote IDF Europe as a frontline organisation representing people living with diabetes as well as healthcare professionals.

We would like to thank Ms Viviane De Laveleye for dedicating her time during the three days of blood glucose testing and acknowledge the support from the EC’s Medical Service department for making this public outreach possible.

More information

If you want to know more information about IDF Europe and its work, visit its website.

Social Media Milestones for the EPF Youth Group

In November, the EPF Youth Group revealed two exciting social media projects that will contribute to further raise the Youth Group’s profile and reach more young patients throughout Europe: a video on non-discrimination, and a redesigned webpage.

The EPF Youth Group recently released its first video, focusing on discrimination and the invisibility of some chronic conditions in young patients. This video, shared with the general public for the first time on 13 November, was developed in close collaboration with our Youth Group members, who offered ideas and examples from their own personal experiences to the video-makers. The Youth Group is proud to have their input and ideas so clearly reflected in the story and hopes that it will challenge people’s perceptions on invisible illness to say no to discrimination!

If you haven’t already watched it, you can find it here and be sure to share it with your colleagues and other patient organisations. In addition to the original English version, the video will soon be available with subtitles in many EU languages.

A window to the public health world!

The second achievement is the launch of a redesigned subpage for the EPF Youth Group. As part of the EPF website, the Youth Group subpage covers the basic information on the group’s members, activities, and purpose.

The EPF Youth Group collaborated with the EPF Communications team to completely overhaul the site design and to develop a more user-friendly and comprehensive presentation of the Youth Group. The new design will better highlight the individual members, provide contact information and bios on the President and Vice-President, and will also follow the activities of Youth Group alumni. Finally, this new page has a more intuitive layout and will also offer clearer information for potential members, including contact details within the Secretariat, clear membership criteria and detailed instructions on the application process.

Contact person: Danielle Flores, Project Officer:

Experts Pave the Way for Better European Pain Policy

From the 7th to the 08th of June, the city of Valetta in Malta hosted the Societal Impact of Pain (SIP) symposium. Patients, healthcare professionals, researchers and European politicians came together to discuss EU healthcare policies to alleviate the burden of chronic pain for an estimated 100 million patients.

For a very long time, chronic pain and its implications on the whole society[1] have suffered a lack of recognition from the decision makers, both at EU and national level. The challenge for patient organisations working in that area has always been to make the condition acknowledged as an important factor affecting patients as much as any other chronic diseases.

Times are perhaps changing: this year’s symposium saw two major announcements that will potentially bring good news for the chronic pain community:

  • The classification by the World Health Organisation of chronic pain in the catalogue of International Classification of Diseases;
  • The setting up of a focus group on chronic pain within the European Commission EU Health Policy Forum.

Representing the World Health Organisation (WHO), Dr Robert Jakob shared the global institution’s proposal for a new definition of ‘chronic pain’. This classification is to be included in the newest WHO’s International Classification of Diseases (ICD).

The ICD list is used by countries whenever they want to develop new healthcare measures and consider which services to fund. With this new official classification, chronic pain is more likely to get recognition by national governments and be included in national health policies and get more visibility. “This will have major implications for health care,” said Rolf-Detlef Treede, Vice-Dean for Research at the Medical Faculty Mannheim of Heidelberg University in Germany, “We should see chronic pain finally getting the recognition it deserves.”

The other important milestone from the symposium was the communication from Martin Seychell, Deputy Director General at the European Commission’s DG SANTE that a dedicated expert group will be set up within the EU Health Policy Forum, a platform bringing together health-related NGOs and stakeholders, under the auspices of DG SANTE. The hope of the chronic pain community is that this expert group will ultimately enhance best practice sharing across EU Member States, in coordination with the European Commission. Once fully operational, the group will be open to employers’ organisations, insurers, economists and any other invited stakeholder. “The European Commission’s initiative reflects the Maltese Presidency’s goal of structured cooperation between healthcare systems. It is a huge step forward for patients throughout Europe, and a huge momentum for our cause,” said a delighted Gertrude Buttigieg of the Malta Health Network, EPF Member and co-host of the symposium.

Our Secretary General Nicola Bedlington took part in the symposium and recorded a video statement: ”EPF is driving two agendas that are intrinsically linked to the issue of challenging pain: patient empowerment and patient access, aspects that have profound impact on pain management”.


Link to the full report of the event:

[1] The total direct and indirect healthcare costs for chronic pain disorders in Member States vary from 2 % to 2.9 % of GDP, with an EU average of 2.4 % and a cost of EUR 271 billion per year.

Running the Streets for A Good Cause – Mental Health Europe

On May 28th, Mental Health Europe (MHE) will bring together a team for the Brussels 20 KM to raise awareness about mental health issues and support its European anti-stigma campaign Each of Us.

EPF member organisation MHE is currently running a fundraising campaign and is calling for your support and generosity to give a new impetus to their campaign. This year, MHE is teaming up with the Brussels Platform for Mental Health and Partenamut (health insurance company) to build an impressive line-up of more than 1000 runners.

You can be a part of the solution!

With this campaign, Mental Health Europe wants to get the message across that mental health problems are more common than we think, and that each of us can be part of the solution in changing minds and ending stigma and discrimination against people living with mental ill-health. MHE hopes that this race and fundraising campaign will help raise funds to support their advocacy and anti-stigma work.

With the collected funds, they aim at:

  • improving the Each of Us campaign’s website
  • developing more material to support their message
  • creating an awareness raising video about mental health stigma with the help of professionals
  • organising trainings on mental health across Europe.

So, if you care about mental health and wish to support our member in their campaign: just do it!

About Mental Health Europe (MHE)

Mental health is everyone’s concern and Mental Health Europe‘s (MHE) mission is to have the voice of people living with mental ill health heard across Europe.

Read more about MHE’s work and campaign here: