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.

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.

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.

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.

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: danielle.flores@eu-patient.eu