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…)
We are very pleased to announce that the Czech Republic is the 13th country to endorse the Declaration for Action on Stroke and enact the Stroke Action Plan for Europe, bringing the country another step closer to guaranteeing the highest standard of care and support for stroke patients.
To find out more about the Stroke Action Plan for Europe, visit the SAP-E website
The 3rd edition of the Brain Innovation Days team will take place on 26-27 October 2023 in Brussels (Belgium) under the overarching theme “The Brain in the 21st Century”, centred around building resilience and better brain health for future generations and increasing our brains’ readiness to adapt to an ever-changing environment.
Five sub-themes will inspire an array of sessions throughout the two full days:
- Resilient Brains: The Impact of Political, Societal, and Environmental Factors
- Boosting Brain Health and Preventing Brain Disorders
- What’s New? Innovative devices, substances and medicines for brain disorders
- The Self-Healing Brain: Use it or Lose it
- Towards a Brain Healthy 22nd Century
Sessions will include Brain Talks, How-To, sponsor-led satellite sessions, brain innovation days pitch competition, panel discussions with leading experts, an innovation hall and plenty of networking opportunities. To find out more, view the programme here.
The European Life After Stroke Forum (ELASF) brings together people from a research, policy, advocacy and support perspective with people who have lived experience of stroke, to share and discuss research and best practice in life after stroke.
We are now seeking abstracts for the 2nd ELASF, for the opportunity to present either a ten-minute oral presentation or a poster presentation.
Abstracts may be submitted for two presentation types:
Scientific: We are looking for scientific abstracts that may be for either completed or ongoing trials and studies, in the broad area of life after stroke.
Services: We are also looking for abstracts that shares experiences of service developments in life after stroke with the view that these original ideas and innovative practices can be used by others.
Please submit your abstract here – the deadline for submissions is 2 November 2023.
We are pleased to announce that our second in-person European Life After Stroke event website is now live, click here to view. Our registration and abstract submissions are also live.
Our Scientific Committee are in the process of confirming the final programme. Topics that we are likely to include are detailed below, but may be subject to change:
- What does a ‘good’ life after stroke look like?
- Reducing your risk of another stroke
- Practical tips to promote mental health
- Specific topics; managing fatigue and visual problems after stroke
We hope to see you in Dublin on the 11-12 March 2024!
World Stroke Organization Global Policy Webinar
📅 Tuesday 18th July at 13.00 CEST
A global call to action – Increasing thrombectomy access and provision
Moderator: Professor Martin James
Speakers and topics:
1. Dileep Yavagal, SVIN
‘Understanding the global picture from policy to access’
2. Sheila Martins, WSO President
‘Developing stroke systems of care for thrombectomy in low-and-middle income countries’
3. Marc Ribó, Neurologist and Interventionalist
‘Organizing stroke care and measuring the results in a regional level: The experience of Catalonia’
We are very pleased to announce that Romania has pledged to enhance its stroke care by endorsing the Declaration for Action on Stroke and enacting the Stroke Action Plan for Europe.
This is a significant step toward guaranteeing the highest standard of care and support for stroke patients in Romania. (Photo: Minister of Health, Professor Dr. Alexandru Rafila)
To find out more about the Stroke Action Plan for Europe click here
On European Stroke Awareness Day (9 May) we highlight how stroke survivors’ needs are being neglected and suffer as a result.
Our recent report, A life saved is a life worth living – the unmet needs of stroke survivors in Europe, reveals that one in eight stroke survivors has suicidal thoughts, around a third of stroke survivors will become clinically depressed in the years following their stroke and up to a quarter suffer ongoing problems with anxiety.
The report brings together for the first time, research in to over 80 unmet needs of stroke survivors in Europe. It concludes that more should be done to address the needs of the growing number of people surviving stroke.
Please read more here
New data released today from the Stroke Action Plan for Europe Services Stroke Tracker, reveals the gross inequity of access to care and support for stroke patients and stroke survivors across Europe.
The Stroke Action Plan for Europe was launched in 2018, to provide a framework for European governments to improve stroke care and support for all citizens in Europe. As part of this Plan, and for the first time, data from across 36 countries across Europe, covering 12 key areas of improvement, has been collected and is available here [link to the website]. In summary the data shows:
- There is inequity in access to stroke care in Europe and insufficient access to care also in many high-income countries. This is the case for acute care, and to an even larger degree for rehabilitation and life after stroke support.
- National and/or regional data are crucial in planning, organising and documenting access to care; however, such data are lacking or incomplete in the majority of European countries. Most European countries do not have a National Stroke Plan or National/regional registries to monitor stroke care.
- The burden of stroke is predicted to increase but despite this, most countries do not have a plan for primordial or primary prevention.
Professor Hanne Karup Christensen, Stroke Action Plan for Europe steering committee chair: To reduce the burden of stroke in the years to come with its grave effects on individuals as well as societies, governments must prioritise implementing an adequate organization which include plans for primary and primordial prevention, National stroke plans and national/regional registries to monitor quality, outcomes and access to stroke care.
Arlene Wilkie, Director General, Stroke Alliance Eruope: This data released today shows a woeful lack of equitable access to stroke care and support across Europe. This is not good enough. Our governments must do more to prevent stroke, and when they do occur, ensure that every citizen has access to physical and emotional care and support in hospital as well as the ongoing long term support that each stroke survivor and carer needs when they go home. Urgent action is needed by each country to implement and fund a national stroke plan that covers everything from prevention, to acute care, rehabilitation and long term support.
All information can be found here
We are looking for a new European communications and engagement manager..
This person must be creative, passionate and productive with experience in health communication, using all the main channels of communication. and digital asset creation. This person must have excellent written and spoken English.
This role will help us build a strong community with our members and will also help us deliver our flagship projects including the European Life After Stroke Forum, the Stroke Action Plan for Europe and our EU research projects.
Read more and apply here: https://bit.ly/3nIN6Lm
We launched a research report at the European Life After Stroke Forum (Friday 10 March) that reveals the long-term support to meet the needs of stroke survivors in Europe is severely lacking.
A life saved is a life worth living – the unmet needs of stroke survivors in Europe, is a comprehensive review and analysis of all the research on the needs and unmet needs of stroke survivors.
‘A life worth saving must also be worth living but our report shows that even basic things like access to ongoing rehabilitation or mental health support is a constant struggle for people who have had a stroke. All too often service provision and support stop a few weeks after someone has a stroke, but their needs persist.’ Arlene Wilkie, Director General, Stroke Alliance for Europe
Kings College London, who carried out the review, found over 80 distinct issues, where stroke survivors have said that their needs are not being met: from the need for ongoing physiotherapy to promote mobility; or psychological support to help prevent depression. The report also covered the need for better inclusion in social and community life and highlighted the often overlooked needs of informal carers.
‘In my long-term, still ongoing, recovery I have a strong need for continued physiotherapy and occupational therapy. It goes without saying, that for this to happen there is a need for financial resources.’ Jurg, stroke survivor, Switzerland
Read the summary report
European Life After Stroke Forum