On Friday 11 March, we held our Life After Stroke event. Our thoughts were with all of those in the Ukraine, and the atrocious loss of life and suffering they are facing
Each day this war continues, means a more dreadful place for those living with stroke and their families.
We deplore this war and the impact it is having on the provision of vital stroke services, care and support.
Many hospitals have been damaged or destroyed. Medical and allied healthcare professionals are desperately struggling to save the lives of, and care for those who have had a stroke. Healthcare professionals themselves are being caught up in the attacks on civilians. Patient organisations are unable to provide the full support that stroke survivors desperately need.
Those who are living with stroke, whether still in Ukraine or fleeing the country, are suffering from a lack of available medicine, care and support.
This situation is unthinkable in the 21st century.
We are calling for the international community to support Ukraine and the surrounding countries to urgently restore continuity to stroke care.
We must see an immediate end to this war.
We are in very difficult times. We have never seen a pandemic like this affecting our everyday lives. I hope you and your loved ones are safe and well. We want to let you know that SAFE is here for you and continuing to work despite all the problems around.
While COVID 19 is at the forefront of our thinking, stroke still exists. We know that many of you will be at the front line of services and will be seeing the impact of COVID on individuals who have suffered from stroke. We want to hear from you, we want to know what is happening to stroke survivors in your country, we want to know what is happening to your stroke support organisations and we want to know your ideas as to how we can help.
In addition to finding out how COVID 19 is affecting you and your country, SAFE has adapted its work for 2020. Unfortunately, we have not been able to meet with our members through our usual regional meetings, but we have managed to been up, virtually, June and we will again in November. We have delayed the launch of our economic burden of stroke report until November year. The SAFE General Assembly will be held in November this year and we will do this virtually as we are not able to gather you together for a face to face meeting. I am also excited to let you know that that our first European life after stroke forum is going virtual! The date of 12 March 2021 remains the same and we will share more information with you over the coming months. We will fund one representative from your SSO, and one therapist or nurse from your country. The conference will also be open generally to delegates interested in improving life after stroke services. More information, please click here.
What is happening in the world is a lot for everyone to take in just now, and everyone is having to rapidly adapt their lives on a daily basis. I would like to thank all of you for all the exceptional work you are doing. Please continue to keep well and be safe, do what you can to ensure the survival and sustainability of your stroke support organisation, and we hope to hear from you soon.
With best wishes,
On behalf of the Board of SAFE
Life after stroke is a key priority within SAFE’s strategy. It is our pleasure to share with you the date of the first European Life After Stroke Forum – the 19 November 2020 in Barcelona, Spain.
This first European Life After Stroke Forum is driven by the need to implement the Stroke Action Plan for Europe and to create a network of stakeholders involved in professionally researching, advocating and providing evidence for improved life after stroke care.
SAVE THE DATE – EUROPEAN LIFE AFTER STROKE FORUM, 19 NOVEMBER 2020, BARCELONA, SPAIN
We hope we could get you to support the European Life After Stroke Forum by sharing this information with people you know.
When? 19 November 2020
Where? Hotel Catalonia Barcelona Plaza, Barcelona, Spain
Who can attend? Organisations and individuals who operate in the life after stroke area and are research, policy, advocacy or support oriented.
How to register? The registration link will be available soon. Stay tuned!
Please put this date in your calendar and stay tuned for more information that will follow.
We hope to welcome you to Barcelona,
You can access and download the SAFE Annual Report by clicking on this button below
SAFE Annual Report 2019
In addition, please see below the message of the President of SAFE, Jon Barrick:
This has been a busy and exciting year for our organisation, especially in terms of advocating on pan-European level. We have continued work around the Stroke Action Plan for Europe, forming an implementation committee with the European Stroke Organisation. We held a seminal event at the EU Parliament raising the profile of stroke more than ever before, engaging with the Deputy Director General of the EU’s DG Sante and the EU Committee of the Regions. Through our funding of Oxford University’s project on the economic impact of stroke, we have produced up to date and compelling evidence about the cost of stroke in Europe. With all this accomplished, we continue to press ahead, as we have now completed the third and final year of the research which will provide us with vital European and country specific data on the future economic impact of stroke and power of interventions. The Economic Impact of Stroke in Europe report will be launched in full at the Joint World Stroke Organisation/European Stroke Organisation conference in Vienna in May 2020.
We have continued with the Angels project to produce vital information booklets on stroke to distribute to patients and families while in hospital. We have provided this information in 15 different languages to ensure that more people across Europe can use our materials to improve the lives of stroke survivors.
We continue our educational work with those who wish to understand stroke support organisations and become advocates for better care through our online teaching and learning tool SSOFT, and our regional and working conferences. A particular highlight for me in 2019 was the concrete evidence of the value of our partnership orientation, our Industry partners have been very supportive again, our outreach to ESO has been reciprocated, and we continue to see the number of SSO’s grow, and then become members of SAFE. Yet again we go into a new year with record membership which bodes well for the future.
As SAFE goes from strength to strength in activities to reduce the number and effects of strokes, the Board must also ensure the long-term sustainability of SAFE. The Board has achieved much of its work through dedicated voluntary time but has recognised that this needs to be added to by full
time paid staff. The Board agreed that SAFE required more permanent leadership to drive forward and to achieve our goals. I am delighted to let you know that we recruited our first Director General this year and I know you will all join me in welcoming Arlene Wilkie into the SAFE family.
In 2019, we have been able to deliver many significant achievements because of our close working community. I would like to thank those that have worked with and for SAFE this year, and to the members and sponsors who have supported us practically and financially. This next year is my last as President and I am looking forward to ensuring we have a solid 2020 of achievement to strengthen the long-term sustainability of all stroke support organisations in Europe.
SAFE is very pleased to announce the new Director General, Arlene Wilkie, commenced in post on the 12th August, leading and overseeing the delivery of all SAFE activity and projects, working with our existing experienced team of Jelena Misita, Communications Manager, Gary Randall, SAFE European Research Officer, Lucinda Shaw, Partnerships Manager and Sandra Jackson, Secretariat.
Arlene Wilkie, SAFE Director General
Arlene Wilkie, the new Director General, comes with a wealth of experience and expertise, derived from a variety of organisations and roles over the last twenty years in the healthcare sector, primarily in patient focused organisations. These include Director of Research and Policy at Breast Cancer Campaign, Chief Executive of the Neurological Alliance (a membership organisation of 70 neurological organisations in England), Chief Executive of The Migraine Trust, and Interim Director of Services and Influencing at the Brain Tumour Charity UK.
“I am so pleased to have joined SAFE. In the brief time I have been within here I have been so impressed by the passion of the staff and the board, and their determination to see a reduction in the number of strokes in Europe and the impact they have on peoples lives. I will strive to raise the profile of stroke and stroke survivors and ensure all is done to achieve the stroke action plan for Europe. I am also really looking forward to getting to know and working with all our supporters and members.” said Arlene.
One of Arlene’s great strengths is alliance building, particularly around policy development and implementation, and in her role she will be co-chairing the implementation committee of the Stroke Action Plan for Europe, and playing a leading role in our partnership group. Arlene can be contacted at firstname.lastname@example.org
“SAFE has been through a very thorough recruitment process, and from over 130 initial candidates we are thrilled that Arlene has agreed to join us. Her track record is very impressive and over the next few years with the need to ensure sustainability of SAFE whilst pursuing important objectives such as the Stroke Action Plan for Europe and the strengthening of stroke associations in each country of Europe we know we will benefit from her leadership. The appointment of a Director General is a bold step and demonstrates SAFE’s belief that stroke care and the needs of stroke survivors must be pushed higher up the agenda.” stressed Jon Barrick, SAFE President.
Written by Sarah Belson, published on worldstrokeorganization.blogspot.com
We want to make sure that the voices of people affected by stroke are heard throughout the Congress in an exhibition of stroke survivor, family and caregiver testimonials.
The 11th World Stroke Congress will focus on the latest developments in stroke prevention, acute management and restorative care after stroke. Reducing the burden of stroke on people with lived experience and their family and care givers drives everything the World Stroke Organization does.
In previous years the visibility of people with lived experience of stroke has been promoted through art exhibitions, both physical and online, and a hobbies ebook. (more…)
If you missed our virtual event in March, you can now watch both plenaries at your leisure at our European Life After Stroke website www.elasf.org https://www.elasf.org/resource-centre/
Our next event will be on 9 November 2022. For the latest updates and more information on our Life After Stroke series, sign up to our enewsletter
Thank you for the excellent presentations including stroke survivors stories/experiences. I will definitely be aiming to embed some of these thoughts into my practise to empower my patients to be equipped for self-management in order to give them quality of life as stroke survivors.
Event participant, Plenary 1, Life After Stroke: Be inspired and share control – the added value of self-management
Thank you so much for such an interesting presentation. It was particularly interesting to hear from ‘expert witnesses’ and real- life experience of challenges and coping strategies.
Event participant, Plenary 2, Life after stroke: Communication in everyday life
We had a successful face-to-face presence at the European Stroke Organisation Conference 2022 – the first since the start of the pandemic.
Some of the highlights include:
- A Stroke Action Plan for Europe (SAP-E) workshop where Arlene Wilkie, presented alongside Hanne Christensen (Denmark) and Bo Norving (Sweden). Romania shared their experiences of improving stroke care and Ukraine, Portugal, Italy and Armenia shared their successes to date.
- SAFE President, Harriet Proios, as well as presenting SAP-E awards to Bulgaria, Estonia, Italy, Germany, Greece and Serbia, for their work in promoting SAP-E, spoke of the importance of SAP-E in improving stroke care for stroke survivors.
- Harriet gave a moving presentation on the FAST Heroes initiative, Saving the World One Grandparent at a Time, demonstrating the impact successful educational and prevention campaigns can have.
- Rubina Ahmed, SAFE Board member from the Stroke Association, UK, took part in a panel interview on the patient perspective and how to involve stroke survivors in research.
Stroke is one of the leading causes of death and disability in Europe.
Many strokes can be prevented, treated, and managed.
Learn more about the Stroke Action Plan for Europe targets and roadmap in the Action Plan document
Earlier this month, touch Neurology interviewed Hariklia Proios, SAFE President, about our future objectives, challenges, opportunities and upcoming events
Watch the interview here
The Intersectoral Global Action Plan (GAP) on Epilepsy and Other Neurological Disorders was adopted as a global health priority at the 75th World Health Assembly.
The GAP will address the worldwide and European challenges and gaps in providing care and services for people with neurological disorders, including stroke.
The European Federation of Neurological Associations calls for close alignment of the GAP with the European Union Non-Communicable Disease Initiative ‘Healthier Together’, expected to be adopted in June 2022.
The World Stroke Academy and the American Heart Association will be running a joint webinar on Guidelines for Stroke Rehabilitation on 25 May at 15.00 CET.
The webinar is free and accessible to anyone interested in learning about stroke rehabilitation and recovery.
Sign up here
As a member of the European Alliance for Cardiovascular Health (EACH), we are pleased to see the launch of the Cardiovascular Disease Plan for Europe yesterday, (Monday 16 May 2022).
EACH brings together patients, healthcare professionals, insurers, researchers and industry to tackle Europe’s leading cause of death.
The proposed Plan aims to reduce premature and preventable deaths in Europe by one third in 2030, improve access for all to high quality cardiovascular risk assessments, set multi-disciplinary care pathways and pave the way for greater quality of life.
It also aims to build further on the upcoming EU Non-Communicable Diseases Initiative ‘Healthier Together’ which will be developed with EU Member States, with national plans, tailored to country-specific realities and needs.
Arlene Wilkie, SAFE Director General said:
We are excited to be involved in this initiative. It complements and strengthens the work that we are doing on the Stroke Action Plan for Europe 2018-2030 and ensures that stroke remains high on the European policy agenda.
For more information about the plan see https://www.cardiovascular-alliance.eu/each-plan-for-cardiovascular-health-launched/
The World Health Organization (WHO) is holding a consultation with people living with non-communicable diseases and mental health conditions on the 18 and 19 May (09:00 – 12:00 CEST).
WHO is developing a Framework for Meaningful Engagement, which includes those living with stroke. The aim is to involve them in co-designing policies, programmes and principles.
The consultation will include a mixture of presentations, discussions and breakout sessions. They will be co-led and facilitated by those with lived experience.
Sign up here https://www.surveymonkey.com/r/livedexperienceEUROen
It is International Clinical Trials Day this Friday – the European Centre for Clinical Research Training has organised a free webinar on 20 May on International Clinical Trials Day.
During this free online session, patients will share their journey in a clinical study. This will be an excellent opportunity for other patients to learn the benefits of clinical research.
To register click here.
On European Stroke Awareness Day (Tuesday 10 May) we raise awareness of one of 10 key modifiable risk factors of stroke – high blood pressure.
According to recent statistics from Eurostat (European Commission research), 1 in 5 Europeans have high blood pressure.
The highest levels of high blood pressure were recorded in Croatia (37% of people), Latvia and Hungary (both 32%).
In contrast, the lowest shares were recorded in Ireland (12%), Luxembourg, Romania and the Netherlands (all 16%).
Our Vice President Professor Anita Arsovska said:
The majority of strokes can be prevented by changing lifestyle and behaviours. Our stroke prevention website https://strokeprevention.info/ has been updated with all the latest facts and information to help people reduce their risk of stroke. It is available in six languages (English, French, Polish, Portuguese, Russian, Spanish).
Stroke prevention is a target outlined in the Stroke Action Plan for Europe. National stroke plans need to include stroke prevention and public health interventions to promote healthy lifestyles.
Find out more