Oct 21, 2020
Dear Friends,
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,
Jon Barrick
President
On behalf of the Board of SAFE
Feb 20, 2020
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,
SAFE team
Jan 5, 2020
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.
Jon Barrick
SAFE President
Aug 23, 2019
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 arlene.wilkie@safestroke.eu
“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.
Feb 13, 2018
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…)
Jul 23, 2024
The European Federation of Neurological Associations (EFNA) has launched a new survey to assess and quantify the invisible issues affecting neurology patients and caregivers in Europe.
The aim is to identify, measure and report on these invisible issues (for example pain, stigma, fatigue) as faced by those affected by neurological conditions, either as patients or caregivers. Data generated through this survey can be used to create awareness of these issues and to advocate for change to address them.
This survey is open to anyone over the age of 18 who is living with a neurological condition, or who is carer to someone living with a neurological condition, that resides in Europe. It is available in 8 languages: English, French, German, Spanish, Portuguese, Italian, Polish and Romanian.
Findings from the survey will be published on the EFNA website later this year, and included for presentation at the next meeting of the MEP Interest Group on Brain Health and Neurological Conditions.
The survey will be open until 30/08/2024.
Click to respond to survey.
Jul 9, 2024
We are pleased to announce that our third in-person European Life After Stroke Forum in Prague is now open for registrations and abstract submissions.
The Forum is a unique event where healthcare professionals, researchers, policymakers and those affected by stroke can come together to address the issues of life after stroke. Our programme will be filled with the latest research and best practice, with the voices of people with lived experience at its heart.
We are actively seeking abstracts in two categories:
1. Scientific abstracts – share your stroke-related research, whether it’s ongoing or completed.
2. Services abstracts – have you developed innovative practices in life after stroke? It’s your opportunity to showcase your experiences and inspire others with your ideas.
Submission deadline: 7 October 2024
May 22, 2024
We are pleased to announce that the third in-person European Life After Stroke Forum will take place in Prague on the 10-11 March 2025.
The Forum is a unique event where healthcare professionals, researchers, policymakers and those affected by stroke can come together to address the issues of life after stroke. Our programme will be filled with the latest research and best practice, with the voices of people with lived experience at its heart.
Abstract submissions and registrations will open in July, sign up to our ELASF newsletter here to be the first to receive more details.
May 16, 2024
Did you miss the European Life After Stroke Forum or want to learn more after attending? Here is a summary of our Forum highlights:
- Abstract book: The book of abstracts features all the accepted abstracts, including oral, scientific and service submissions. Download Abstract Book
- Speaker slides: Access the event presentations from our speakers. View Speaker Slides
- Event report: Download the event report to get a comprehensive overview of the Forum’s sessions and activities. Download Event Report
- Event photos: View a selection of photos from the event here.
May 15, 2024
A story of denial, consequences and a wake-up call
Imagine a typical morning drive to a meeting in Padua, Italy. That’s where it all started for me, just another day, or so I thought. But a strange feeling in my car’s steering wheel set off a chain of events I never saw coming. I wasn’t feeling great that morning, but I brushed it off as just a bit of flu. Even when I started feeling dizzy and my leg went numb, I kept telling myself it was nothing serious. It wasn’t until I struggled to speak during a meeting that I realised something was seriously wrong.
I let someone else drive me to my next meeting. I got home and had dinner. I was feeling worse by the minute. Despite my wife’s pleas, I refused to go to the hospital. I was convinced I could tough it out, even though deep down, I was scared that I had had a stroke. You see, my sister-in-law had a stroke a year earlier, so I knew the symptoms
I said to myself ‘I’m living a very healthy life anyway, I do sport, I haven’t smoked for years, so I certainly don’t have any problems’, but I understood, even if I didn’t want to admit it, that something ‘big’ had happened. I had stopped taking all the pills my doctor had prescribed a while ago, statins, aspirin and blood pressure pills and I had a very busy job that regularly kept me away from home, eating in restaurants.
The next day, things only got worse. Finally, I gave in and went to the hospital. That’s when everything changed. Turns out, I’d tried to ignore my stroke, thinking I was both Rambo (I was angry, but this was not going to get me) and Peter Pan (I am not even fifty – I am too young for this). From that moment on, life changed, not only for me, but also for my family.
My message to you – one thing is certain; you know when something very bad is happening to you. Recognise it, know it! You don’t have to pretend you don’t notice or that you are superior. If you don’t have time to stop for a check, fate will stop you. Ignoring warning signs and thinking you are too young or too invincible only leads to trouble. Listen to your body and take care of yourself!
By Claudio Mari
May 14, 2024
The latest data from the Stroke Action Plan for Europe (SAP-E) Stroke Service Tracker (SST) shed light on Europe’s journey toward better stroke care and support. While there are positive signs of progress, the report also reveals persistent gaps and challenges, highlighting the continued need for nationally targeted interventions.
The SST, which examines 12 key areas of stroke care improvement, shows positive strides in meeting SAP-E targets and improving acute treatment, organisation and quality control of services. Several countries, including the Republic of Moldovia, Bulgaria, Czech Republic, Estonia, Norway, Portugal, Romania, Sweden, and Wales are making commendable progress.
However, access to stroke unit care, follow-up and life after stroke services and support remains uneven. Disparities in care provision across regions underscore the need for targeted interventions to ensure equitable access to quality care and support for all affected by stroke.
The data underscore the urgent need for national stakeholders to address these gaps. By leveraging this information, countries must implement tailored stroke strategies to ensure that everyone affected by stroke receives timely, high-quality care and support, regardless of their location or socioeconomic status.
We urge all European countries to continue to harness the power of their SST data to bridge gaps in their stroke care. Let’s prioritise action and ensure every stroke patient receives the care they deserve. Read more here.
About SAP-E: The SAP-E is a collaborative initiative aimed at improving stroke care across Europe through research, advocacy, and policy development. By bringing together stakeholders from across the healthcare spectrum, SAP-E seeks to set standards and drive positive change to improve outcomes for individuals affected by stroke. Visit the website to find out more.
Mar 19, 2024
Thank you to all those that came to our event European Life After Stroke Forum (ELASF) in Dublin on the 11-12 March. We are delighted to have so many of the European Stroke Community come together to continue to improve Life After Stroke.
To view the abstract book, please download it here.
To view the slides from the event, please click here.
To register to be the first to hear about our 2025 event, please click here.
Mar 18, 2024
The Stroke Alliance for Europe (SAFE) and the European Stroke Organisation (ESO) today launch their joint EU MEP Election Manifesto 2024. For the elections in June we are asking MEP candidates to support improving health across the EU with a focus on improving prevention, care and support of those affected by stroke across Europe.
Every year, nearly 1.5 million people suffer a stroke in 32 European countries1. Stroke can be devastating – leading to death or life-long disability2, shattering the lives of victims and their loved ones. Those who survive will join the more than 9 million European stroke survivors who live with long term health, social, and financial impacts3.
The EU Non-Communicable Disease Initiative, Healthier Together, launched by the European Commission in 2022, provides opportunities for policy action that both EU-level and national policymakers should build on. We call upon all EU level policymakers, to prioritise stroke in health policies, to support member states to develop national stroke plans and lead research into the under-examined areas of stroke.
Following the principles of the Stroke Action Plan for Europe, SAFE and ESO are calling for the implementation of the following policy proposals:
Prior to a stroke
- Primary prevention and risk factor control
- Implement legislation for public health interventions
- Implement risk factor screening and treatment programmes
Amidst the stroke
- Quality of care and stroke management
- Ensure equal access to acute stroke care
- Establish a quality improvement system for stroke services
Life after stroke
- Prevent further stroke and take care of those who had one
- Implement post-rehabilitation personal care plans that offer non-medical support
- Provide sufficient secondary prevention services
- Guarantee equitable access to rehabilitation prior and post discharge
- Develop a European framework of reference for stroke care quality
- Empower a dignified life after stroke
Understanding stroke
- Provide sufficient research funding
- Improve stroke services with better data
- Encourage research into under-examined areas of stroke
References
- At what cost: The economic impact of stroke in Europe. University of Oxford for the Stroke Alliance for Europe (SAFE).
- Sudharsanan, N., Deshmukh, M., & Kalkonde, Y. (2019). Direct estimates of disability-adjusted life years lost due to stroke : a cross-sectional observational study in a demographic surveillance site in rural Gadchiroli, India. BMJ open, 9(11), e028695.
https://doi.org/10.1136/bmjopen-2018-028695.
- Wafa, H. A., Wolfe, C. D. A., Emmett, E., Roth, G. A., Johnson, C. O., & Wang, Y. (2020). Burden of Stroke in Europe: Thirty-Year Projections of Incidence, Prevalence, Deaths, and Disability-Adjusted Life Years. Stroke, 51(8), 2418–2427. https://doi.org/10.1161/STROKEAHA.120.029606.
Mar 16, 2024
On Brain Awareness Week’s sixth day we are focusing on VALIDATE which is using artificial intelligence (AI) to personalise acute stroke treatment and improve outcomes.
In ischemic stroke treatment, timely access to appropriate interventions is paramount. While there are a range of effective therapies, navigating the intricacies of individual patient cases and not accurately considering each individual patient holistically can influence treatment outcomes and long-term quality of life.
The VALIDATE team are aiming to improve this. By using datasets from thousands of patient profiles and state-of-the-art AI models, they are developing and validating a clinical decision support system. Central to this project is the creation of a new App which aims to provide additional information for clinicians by predicting the outcome of different treatment strategies. This system will empower healthcare professionals in choosing the optimal treatment strategy tailored to each patient’s unique circumstances.
Beyond providing accurate prognosis, the success of the Validate App hinges on gaining the trust of clinicians and patients in its implementation. To achieve this, rigorous testing in real-world clinical settings will be conducted through observational studies, validating its efficacy and reliability.
For stroke survivors, the long-term implications could mean personalised treatment options and improved outcomes and quality of life.
For more information visit the VALIDATE website https://validate-project.eu
VALIDATE has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 777107.
Mar 15, 2024
On Brain Awareness Week’s fifth day we are focusing on ANGIE, a research project supported by EU, which aims to develop micro-robots for targeted drug delivery, to dissolve blood clots in acute stroke treatment.
To ensure accurate targeting, the research team have developed 3D-printed re-constructions of patient’s brain vessels based on their MRI scans. These brain 3D models are gaining recognition in the medical community for their ability to provide a realistic and safe environment for doctors treating stroke to hone their skills and facilitating earlier and more extensive training.
Ultimately, this advancement could mean that more patients have access to more lifesaving procedures and go on to improve stroke treatment outcomes.
More information can be found at www.h2020-angie.eu
The project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement number 952152.
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