Nov 24, 2018
On November 22nd, 2018 EFPIA (The European Federation of Pharmaceutical Industries and Associations) announced winners of this year’s Health Collaboration Award. The overall winner is the Angels Initiative project.
With over 80 entries received from across Europe, The Health Collaboration Awards gives an opportunity to showcase collaborative projects that have benefitted the lives of patients across Europe. Giving her reaction, EFPIA Director General, Nathalie Moll said “As we seek to address the challenges faced by patients and our healthcare systems, partnership and collaboration will be key. No one sector has all the answers and by putting patients at the heart of projects, pooling our resources and expertise and finding new, innovative ways of addressing health needs it is amazing what we can achieve. The entries and winners of this year’s Health Collaboration Awards are fantastic examples of that approach and I hope will provide food for thought and inspiration to us all.”
SAFE is proud to be part of the Angels Initiative project, providing critical information to stroke patients when they most need it, already in the stroke unit. SAFE’s contribution to this amazing project started in May this year simultaneously in 12 European countries: Spain, Serbia, Poland, Czech Republic, Latvia, Croatia, Macedonia, Greece, Ukraine, Georgia, Hungary and Turkey.
In selected hospitals in these countries, stroke patients and their carers will be provided with information on stroke and important next steps on their path to recovery. The patient-focused materials are made of five brochures, including a list of national, regional and local stroke support organisations, with their contact details, in order that patients and carers can access further support in the months and years following their stroke. The information provided in the brochures are kindly provided by the Stroke Association UK and then translated to all project languages, applying the information standard procedure for the translation.
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About EFPIA
The European Federation of Pharmaceutical Industries and Associations (EFPIA) represents the pharmaceutical industry operating in Europe. Through its direct membership of 36 national associations and 40 leading pharmaceutical companies, EFPIA’s mission is to create a collaborative environment that enables our members to innovate, discover, develop and deliver new therapies and vaccines for people across Europe, as well as contribute to the European economy. Our vision is for a healthier future for Europe. A future based on prevention, innovation, access to new treatments and better outcomes for patients.
About Angels Initiative
Every 30 minutes a stroke patient who could have been saved, dies or is permanently disabled, because they were treated in the wrong hospital.
Angels Initiative is building a global community of stroke centres and stroke-ready hospitals, working every day to improve the quality of treatment for every stroke patient.
The goal is to get 1500 stroke-ready hospitals around the world by May 2019.
For more information about Angels Initiative, please visit www.angels-initiative.com
Nov 9, 2018
You can access and download the SAFE Annual Report by clicking on this button below
SAFE Annual Report 2018
In addition, please see below the message of the President of SAFE, Jon Barrick:
“I am pleased to report that the last year has again been one of major success and progress. During 2018, after months of hard work with the domain groups of experts convened by ESO, all of which included representation from
SAFE, a consensus was achieved on a Stroke Action Plan for Europe. A set of recommendations was jointly launched
with ESO in the European Parliament in May. This autumn we released a lay version of the Stroke Action Plan with the scientific version being published in the European Journal of Stroke in October.
SAFE now has 33 member organisations for the first time in our history, and happily approximately 10 now employ staff, a sure sign of increasing professionalism. We would like to express our grateful thanks to Bayer for supporting the working conference and the development of the Stroke Support Organisation Faculty Tool (SSOFT). Victoria Brewer has managed this huge project with great professionalism and we are thrilled to now have an educational and training tool to drive forward advocacy and the growth of stroke support organisations. Its success will, I believe, be measured by the number of countries impacted by the cadre of people mobilised by the tool. They will be enabled to advocate and campaign, build stroke support organisations and improve stroke care and support.
We would also like to thank the BMS/Pfizer Alliance for their additional support for the 2018 working conference.
This year we have again contracted Weber Shandwick to support our work within the EU. Through this collaboration we have continued to raise the profile of stroke within the European Parliament, and have initiated contact with the forthcoming Romanian Presidency and the Committee of the Regions. (The European Committee of the Regions (CoR) is the voice of regions and cities in the European Union (EU). It represents local and regional authorities across the European Union and advises on new laws that have an impact on regions and cities, which is 70% of all EU legislation). We held successful regional conferences in June and July, in which member organisations had the opportunity to meet and discuss issues, challenges and progress. These covered all countries in Europe, and we are grateful for the support of Boehringer Ingelheim whose sponsorship enables these events to occur. Alongside the working conference, the regional conferences have been of critical importance in enabling the setup and development of stroke support organisations.
We have delivered more stroke messaging to the public than ever before, and our presence on social media grows day by day. Jelena Misita, SAFE’s Communications Manager, has done an outstanding job, as well as managing our work around stroke awareness, including sitting on the World Stroke Campaign working group, our website, and our creation and print work, of reports and literature, Jelena handles many meetings with outside partners. This includes for example the work with the Angels project involving thousands of leaflets in 13 different languages being produced and distributed.
Our industry partners group, where commercial organisations get together with us to discuss how we can help move the agenda of stroke prevention, care and survivor support forward, has gone from strength to strength. I want to thank in particular all those individuals and their organisations who have played such a key role in enabling SAFE to perform and achieve at the highest level yet. Their contributions are very much appreciated, and absolutely essential for SAFE sustainability.
We are once again holding our working conference with an important national organisation, the German Stroke Foundation. This organisation deserves the highest praise for its continued support of SAFE, an involvement that stretches back to the earliest formation of our coalition.
2018 has been our busiest year to date, with ongoing and new projects such as Merz’s spasticity website, the website on Prevention sponsored by Amgen, being developed and providing much needed information on the web.
Our Volunteer Gary Randall deserves our thanks for his support with regard to our contract with Oxford University to deliver a research report on the economic impact of stroke to be launched October 2019, and in managing a raft of EU research projects.
The SAFE board has worked harder than ever this year, and I as President would like to commend and thank them all for what they have given to help conquer stroke. We have made changes to our governance to ensure that we are able to manage an ever-growing coalition and range of financial and other obligations.
I would also like to particularly single out Sandra Jackson, who moved into a full time role with SAFE this year to provide the Secretariat, necessary given the growth of SAFE. Sandra as a consequence has been able to address some of our longstanding issues with regard to the installation of a management accounting system enabling us to better ensure the sustainability of SAFE into the future. Additionally Sandra has continued to ensure, with the Treasurer Grethe Lunde, effective cost control to ensure our money goes as far as it can to conquer stroke.
As the central activity of SAFE has raised its performance, so too we see more member organisations beginning to grow and employ staff, conduct campaigns, run services, and build their websites and social media activity.
It’s been a great year, the future promises much – together we are stronger.”
Jan 11, 2018
STROKE ALLIANCE FOR EUROPE
STRATEGY
2017 – 2021
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FOREWORD
The Stroke Alliance for Europe has conducted a review of its strategy and goals for the period to 2021. This will enable us to make progress against our constitutional objectives and also support our member organisations.
Importantly we now have a firmer partnership with the European Stroke Organisation (ESO) and we want to build on this to drive the stroke agenda forward in every country within the geography of Europe.
SAFE asks that all member organisations should consider positively the opportunities which will be presented by participation in SAFE and build our collective and individual strength as stroke support and advocacy organisations.
These activities and goals are proposed with the intention of making all organisations stronger in the longer term, at both a national and European level.
Jon Barrick
SAFE President
December 2017
OBJECTIVES AND STRATEGY 2017 TO 2020
SAFE’s vision is to work towards greatly decreasing the number of strokes in Europe and that all who are touched by stroke get the help
and support they need.(1)
SAFE therefore engages in activities such as campaigning, education and encouraging research, which contribute to the advancement of stroke prevention and the improvement of the quality of life of stroke survivors, their families and carers. We do this both at a European level, and by supporting members to do so locally.
The overall aim of SAFE is to reduce the numbers of, and ameliorate the effects of, strokes across Europe. Which objective, and with what vigour they are pursued, will vary according to the environment at the time, and the possibilities of strategies around the objectives being likely to achieve success.
(1) www.safestroke.eu
The objectives drawn from the Constitution are:
to promote awareness and understanding of stroke;
to promote prevention;
to identify those at risk;
to improve access to appropriate treatment and care for persons affected by stroke;
to improve the quality of life of people affected by stroke and their families and carers;
to promote better access to accurate and understandable information about stroke;
to increase the priority given to stroke by policy and decision makers and by health care providers;
to promote research on stroke and related areas;
to co-ordinate the efforts of national stroke patient groups in Europe;
to encourage the growth of stroke organisations reflecting the views of stroke survivors and their supporters.
INTRODUCTION
Since 2015 the SAFE membership has continued to expand, and the implementation of partnership building strategies has led to the creation of links with the ESO and commercial organisations in the world of stroke to progress.
The goals match the priorities identified by our members, and ‘Governance and resources’ added as this underpins all our work.
Our 2015 to 2019 strategy identified four priorities:
Support stroke patients to receive better access to specialist care and rehabilitation.
Encouraging and growing stroke patient groups.
Influencing decision makers at EU level.
Research.
To which we have now added a fifth:
Secondary prevention of strokes.
We interpret this as being concerned mainly with dealing with identifiable situations that can lead to a stroke where stroke may be a consequence of not dealing with the situation, or not continuing to respond to a situation. Atrial fibrillation, Transient Ischaemic
Attacks (mini strokes), high blood pressure diagnosis and treatments, and supporting continued medication or lifestyle change regimes are all part of this.
GOAL 1: Supporting stroke patients to receive better access to specialist care and rehabilitation
Stroke treatment and care is not a priority in many countries. Provision is unequal across Europe and within member countries. SAFE will put the experiences of people who have had a stroke and their families at the centre of all our discussions, campaigning and lobbying, acting as an advocate at a European and supporting local level member campaigns.
SAFE will centrally provide members with information, templates and material to ensure they are kept up to date with developments in stroke care, support and rehabilitation and SSO development.
During the next five years we will support:
Campaigns calling for specialist stroke units to be established to ensure people who have a stroke have access to the best possible
acute treatment and care to improve outcomes.
Campaigns for treatment and care to be provided following the best available evidence to ensure people who have had a stroke are
able to achieve the best possible recovery during the acute phase, rehabilitation and long term support.
Campaigns for easy access to assessment of need with aids, equipment and information being made available for every individual
in all our member countries.
SAFE will campaign to reinforce the Helsingborg Declaration (2006) and push for a new drafting in the light of new treatments
and knowledge, and urge governments to improve activity in their countries (2).
SAFE will seek and work with partners such as ESO and commercial organisations to achieve progress in stroke care and awareness, and
be driven by the needs of people and their carers who have had a stroke to improve care and support along the stroke care pathway.
(2) https://nieuw.kennisnetwerkcva.nl/sites/default/files/Helsingborg-artikel.pdf
GOAL 2: Growing and supporting Stroke Support Organisations
We want to increase the number of organisations and the groups of stroke survivors and carers associated with them across Europe and help our members to share good practice, experiences and learning and enable sustainability and growth.
We will:
Deliver an annual Working Conference and General Assembly for our members to meet and share ideas, materials and programmes, and at the same time, get involved with the strategic direction and activities of SAFE.
Encourage, develop and create stroke related patient organisations and affiliate them to SAFE, and partner with and encourage other organisations with a shared interest to affiliate as supporters and sponsors.
Through regional events, webinars, the members section on the SAFE website, the provision of support and pump priming grants, to enable opportunities to share resources, experiences and enable growth and sustainability of member SSO’s.
Ensure opportunities are available for members to discuss community and peer support systems to support and enable growth of these within each country.
Provide material for members, the WSO and other organisations supporting the value of self-management in stroke survivors and the value of peer to peer support, and raise awareness of this issue.
Review terms and conditions of membership to strengthen mutual engagement of SAFE and member organisations, create an engagement plan so there is more mutual support and collaboration all year round.
GOAL 3: Influencing and campaigning
Stroke is a preventable, treatable and beatable condition, and as a European alliance support organisation we are in a strong position to campaign and lobby effectively at EU level for more resources and awareness of stroke, and to support members to operate at country level.
To achieve this we will:
Support the development and delivery of an annual European Awareness event in May every year.
Develop and build on the SAFE European Burden of Stroke report, creating and developing an industry partners group, and with ESO work for progress on all aspects of European stroke care, and with WSO through participation on the World Stroke Campaign Group.
Develop resources and support for members to lobby their own MEPs, to influence at European and country level, and work
with members to identify lobbying opportunities and position statements.
Promote the positive activity of SAFE and its members, and reinforce the purple identity of the stroke cause.
Work towards the establishment of a campaigning presence in Brussels. This presence will enable member organisations to lobby and communicate with their MEP’s as well as pursuing an agenda on European campaigning as agreed by the General Assembly.
GOAL 4: Research
Research evidence has led to the development of real improvements in stroke prevention, treatment, rehabilitation and care. SAFE has a unique role to play as a stroke support organisation being a visible, pro-active member and advisor to project consortia, disseminating information about research projects through our members.
Horizon 20:20, the EU funding framework, provides an opportunity to strengthen this contribution and our aim is for SAFE to be the default ‘go-to’ partner for stroke research projects requiring patient representation.
We will:
Continue to participate in at least 3 concurrent research projects working on dissemination and communication about the projects to stroke support organisations and the general public.
Be involved in European research activities and the development of research proposals identifying for each project what level of support SAFE can provide.
Support each member organisation by providing research information and templates for different communication channels to disseminate research information.
Build and serve networks that will support our wider goals by cultivating relationships with key academic clinicians who sit on national and European guideline making bodies.
Empower members through the dissemination of research findings to campaign for improvements in treatment and care at a local level.
Ensure finance due to SAFE for EU related research activity is claimed.
GOAL 5: Prevention of Strokes
Stroke has now climbed to become the second biggest cause of death in the world, and the number one cause of severe long term disability. SAFE does not have the resources to combat the disparate cause of ill health across Europe, but we can play a part in more focussed campaigns to ensure that where warning signs appear or can easily be diagnosed then action takes place to prevent a stroke.
To this end we will raise awareness and campaign on the following areas, although this list may be added to due to environmental changes or opportunities presenting themselves.
The Board will consider creation and implementation of awareness activity relating to these goals, spread across the five years and utilising World Stroke Day and European Awareness week as hooks to promote these messages and the need for stroke support organisations.
High Blood Pressure diagnosis and its treatment, raising awareness of its relationship to stroke.
Atrial Fibrillation, what it is and its relationship to stroke, diagnosis and treatment.
Mini strokes – what they are, their relationship to more serious strokes, diagnosis and treatment.
The need to maintain medication and healthy lifestyle regimes.
Awareness of the symptoms of a stroke occurring campaigns, such as FAST, and the actions to take.
GOAL 6: Governance and Resources
To deliver this strategy we will generate the resources required to sustain and develop SAFE. We will maintain partnerships that help to deliver our strategy.
We will keep the role and performance of our Board and paid staff under review to ensure we have the skills and knowledge required to take the strategy and its implementation forward:
Develop a fundraising plan to support the delivery of the strategy identifying new funding streams and pursuing them.
Develop and improve our financial reporting procedures and processes, particularly operational expenditure and income, balance sheet and cash flow within quarterly accounts.
Ensure our members understand their responsibilities in relation to delivering our commitments to research projects.
Ensure new board members follow an induction process and understand their governance role and responsibility, and undergo performance review annually.
SAFE will create a pump priming fund to aid development of new member organisations, and employ more paid workers in taking our work forward.
SAFE will seek to recruit members to the board who have competences and skills necessary to enable delivery of our strategy and constitutional objectives.
THE STROKE ALLIANCE FOR EUROPE is registered in Belgium (ASBL 0661.651.450) with registered office at
Rue Washington 40, Brussels 1050, Belgium,
Mailing address: SAFE Secretariat, Stroke Association House, 240 City Road, London, EC1V 2PR Telephone:
(+44) 207 566 0310. Email: mail@safestroke.eu and info@safestroke.eu
The document “Stroke Alliance for Europe: Strategy 2017-2021” is available for download from this link.