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.
At our April SAFE board meeting we shared experiences on what is going on at the moment. As you know some of our Board members work in hospitals, where all holiday has been cancelled and they are on call to support their colleagues should their services be required, and some have been drafted to assist. Others are working hard to transform the way they are delivering their teaching courses to students to ensure that we continue the training of our physiotherapists and speech and language therapists of the future.
Conferences such as the European /World stroke congress in Vienna in May was postponed. People are isolated and not meant to go out in many countries and having to use and get used to new electronic means of communication in such a short period of time. Fundraising has hit unknown lows as fundraising events and initiatives have been cancelled. Face to face stroke support groups have been cancelled in most countries across Europe because people can no longer get together, and some Stroke Support Organisations have had to stop employing staff or contractors. Keeping volunteers is problematic without activities and regular communication. Normal campaigning and advocacy has ground to a halt in most countries and at EU level.
While COVID 19 is at the forefront of our thinking, stroke still exists. And 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. We sent a survey to our member organisations which we are currently reviewing. We will then see how things are across the whole of Europe and will share this information to support others.
In addition to finding out how COVID 19 is affecting you and your country, SAFE must also adapt its work for 2020. Unfortunately, we will not be holding regional meetings in May and June this year, but will hold one meeting electronically on 23 June 2020. This will be a first for SAFE and we are excited to see how this will work. We have also delayed the launch of our economic burden of stroke report until the autumn this year. The SAFE General Assembly will be held in November this year and we will do this electronically if we are not able to gather you together for a face to face meeting. Our first European life after stroke forum will be moved from November this year to 12 March 2021, in Barcelona. We hope to be able to fund one representative from your SSO, and one therapist or nurse from your country, and you will also be able to pay for other delegates from your organisation. The conference will also be open generally to delegates interested in improving life after stroke services. More information will be provided in our next members newsletter, we will update you further on exact dates and timings.
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…)
NEWS RELEASE 29th May 2020, Geneva
The World Stroke Organization (WSO) has published a radical strategic framework that aims to transform prevention of stroke and dementia.
Published in latest edition of The Lancet Neurology, the WSO Declaration on Global Prevention of Stroke and Dementia, recognizes the commonality and reciprocity of stroke and dementia risk and calls for urgent action by governments and healthcare policy bodies to address the limitations of current prevention strategy. Over the past ten years the adult lifetime risk of stroke has increased from 1 in 6, to 1 in 4.
Without new evidence-based interventions, the WSO projects a current trajectory of disease that will lead to an annual death toll of 12 million stroke deaths and 5 million dementia deaths by 2050.
Highlighting the need for action in low- and medium-risk populations, who will ultimately represent 80% of the stroke and cardiovascular disease burden, the Declaration identifies four interdependent interventions that will significantly reduce the incidence and prevalence of stroke and dementia. The strategy also takes into account the specific challenges experienced by governments and communities in Low- and Middle- Income countries, putting in place a lower cost alternative to current prevention approaches.
Key principles of the Declaration
1 Adoption of population wide strategies that reduce exposure to stroke risk factors such as tobacco, alcohol and food policies, as well as action to address environmental risk factors, including air pollution, across the lifespan of the whole population.
2 Implement and promote the adoption of motivational mobile technologies, e.g. the WSO endorsed StrokeRiskometer to identify individual risks and support action on lifestyle risk factors among adults.
3 Access to low dose combination of generic blood pressure and lipid-lowering therapies in one polypill for middle age and older adults with at least two behavioural or clinical stroke risk factors.
4 Investment, training and deployment of community health workers to facilitate implementation.
WSO presents combined research evidence that shows a combination of these interventions would lower the incidence and of stroke by 50% and dementia incidence by 30% while contributing to decrease in incidence of other non-communicable diseases which share common risk factors.
Another proposed shift of approach is to change the way risk is communicated to patients, by health professionals. Current categorisation into low-, medium- and high-stroke risk can give a false sense of security for those who are told they are low or medium risk and may not take into account all risk factors that are present. The global stroke body instead calls for a more holistic approach, that places stroke risk on a continuum and encourages early intervention and a life-course approach to risk reduction.
WSO President Prof Michael Brainin, who champions the organization’s prevention effort said ‘COVID-19 has spurred previously inconceivable levels of government intervention and individual behaviour change around the world, but we have been effectively living with a stroke pandemic and a failing prevention strategy for years.
The need for radical action is clear and our prevention principles provide low cost, evidence-based approaches that if implemented globally would not only save millions of lives but would deliver savings of hundreds of billions of dollars annually. This is money that will be desperately needed to strengthen global health systems and to fuel economic recovery in the wake of COVID-19.
For more information please contact Anita Wiseman email@example.com
Notes to Editors
1 The World Stroke Organization is the only global body solely focused on stroke. With around 90 organizational members from countries in every global region, we represent over 55,000 stroke specialists in clinical, support and community settings. The WSO vision is a ‘life free from stroke’. We work towards this vision through a strategic programme that addresses key factors in stroke mortality and morbidity at global, regional and national levels. Our strategy combines evidence-based advocacy, context-sensitive guidelines, toolkits, clinical education and training programmes and public campaigns that aim to raise awareness of the symptoms of stroke and stroke prevention.
2 WSO is an NGO in official consultative relations with the UN Economic and Social Council and a WHO implementation partner.
Image credits: WSO
Author: Dr Maja Bozinovska Smiceska, Neurologist and President of the Macedonian association for a fight against stroke “Stroke”- North Macedonia
Situation in Republic of North Macedonia with regards to the cost of COVID pandemic is similar to many other countries. Our country is managing to flatten the curve, but the mortality rate is still very high. New healthcare problem that appears is a danger of mismanaging many other conditions in different clinical fields, that will lead to additional dramatic, serious and long lasting consequences for many other diseases, especially stroke.
Beyond the fact that people with cerebrovascular diseases have been found to be particularly prone to developing complications and death when suffering from COVID-19 infection, the pandemic also has a much higher impact on stroke care, with significant influence on stroke-related health services, which can lead to worse outcome of patients who have had a stroke comparing to pre-pandemic time.
Even FAST treatment (thrombolytic therapy) is under threat from the burden imposed by management orientated towards potentially contaminated patients, and these measures result in a prolonged needle-to-door time, and in the worst-case scenario, patients do not get the treatment. Furthermore, there is delay in admission to the hospital or a delay in referral, or an error by the patients themselves who prefer not to enter the hospital at all.
Last but not least, regular periodic medical check-ups or consultations and activities related to the rehabilitation of these patients have been reduced, due to the redirection of the resources for emergency management of COVID-19, but also due to patients’ personal fear, especially of those who are already familiar with the fact that they are more susceptible to severe infections. This can lead to increased physical as well as psychological consequences.
This situation is even worse in developing countries like ours, where resources are already scarce.
That is why our organisation is striving to be active and working to emphasize the need for healthcare services for acute stroke to be maintained consistently even in these difficult times, and for patients themselves and their family physicians to continue to strive to provide hospital referral for acute stroke.
Virtual meeting of the Macedonian association for a fight against stroke “Stroke” during the Covid-19 pandemic
Macedonian association for a fight against stroke “Stroke” has been involved in several missions over the past three months to improve statistics on the disease. Online activities were continuously organised, led by a team of doctors and nurses, through which the public was informed about the problems of stroke patients and at the same time practical advice was offered regarding the early recognition of the signs of stroke, the need for prompt response and referral to an appropriate center, the need for early screening for the risk in those who have had a transient ischemic attack or a small stroke, and also support for chronic stroke problems management as stiffness, pain, depression, dementia, etc. Through the ZOOM platform, we have reached more than 200 people who are directly or indirectly related to stroke. The association also made an effort not to leave aside even the most sensitive categories of our population, and in several actions distributed food aid and other basic products to the socially disadvantaged stroke victims.
We recommend to your attention the video of Alexia Kountouri, the Stroke Ambassador of the Cyprus Stroke Association.The video was made as part of the raising awareness campaign for this year’s European Stroke Awareness Day.
Alexia has survived a stroke at the age of 28. She explains how stroke has changed her life, and the time she and her family needed to accept her new self after stroke. Alexia talks about her mobility issues, aphasia, and how she managed to be independent again. She is an inspiring woman, who shows that life goes on no matter what!
For more information about the Cyprus Stroke Organisation and their activities, please visit https://stroke.org.cy
As we wake up today, we know the devastating impact the Covid19 pandemic is having around the world. Our thoughts and prayers go out to those affected and the healthcare workers looking after them.
Today on European stroke awareness day we must also remember the devastating impact that stroke has every single day of every single year. Stroke can happen to any one of us and delaying treatment can cause serious lifelong disabilities.
Today on European stroke awareness day we urge anyone who has any symptoms of a stroke such as numbness or weakness of face, arm or leg (especially on one side of the body), vision problems, loss of coordination, confusion or trouble speaking or understanding, to go to hospital ASAP – the health system is still there for you. Please do not suffer alone. Your life could be saved.
Today on European stroke awareness day we also call for governments across Europe to ensure that all health conditions – infectious and non-infectious – are treated equally. Covid19 is casting a very long shadow and we cannot allow our healthcare to fail our citizens.
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This Report was commissioned by Stroke Alliance for Europe (SAFE), a non-profit-making organisation that represents a range of stroke patient organisations from across Europe, whose mutual goal is to drive stroke as a topic up the EU and national political agendas. SAFE aims to decrease the number of strokes in Europe by advocating for more patient-centered research, better prevention, access to adequate treatment and a life after stroke worth living. Since 2004, project by project, SAFE is raising awareness of the major impact stroke has on individuals, families, countries and, finally, on the entire economy of Europe.
The FENS 2020 Virtual Forum will feature the same high quality scientific programme and provide delegates with exciting opportunities to learn, interact, grow and network.
Following the live event, an extended on-demand access of three months will allow delegates to go back and enjoy all sessions and events.
There is still time to take part and share your research: abstract submission and early registration have been extended until 18 May 2020.
More information www.forum2020.fens.org
Press release by Portugal AVC
The Portuguese association of stroke survivors – PT.AVC – cautions about the consequences of the current health crisis on stroke care. Stroke is the first cause of death and disability in Portugal.
In a survey performed between 20th and 27th April and to which 868 Portuguese stroke survivors responded, 91% of all patients indicated for rehabilitation treatment reported that they had to stop or were unable to start this intervention. This is particularly worrisome as there is compelling evidence that delays in rehabilitation are associated with a greater likelihood of long-term disability, thus undermining social integration and leading to worse quality of life.
Moreover, only 15% of the respondents had their follow-up medical visits since the beginning of the pandemic and, amongst those stroke survivors still under medical attention, about half had also their scheduled medical examinations cancelled or postponed.
Overall, about one third of the respondents reported felling that their health was worse or much worse than before the outbreak and, among those who had a stroke within the previous year, this proportion raised to 50%.
Most of the participants confirmed several complaints, such as feeling anxious, experiencing worsening of motor and/or speech difficulties and increased concerns with regards to recovery and risk of stroke recurrence.
Importantly, 38% stated that the current situation is having a negative effect on their financial situation, which we know is often already impaired.
PT.AVC thus emphasises that, during the reopening phase that is now starting, investment in expansion, adaptation and reorganization of rehabilitation services is imperative, with maintained quality. The Portuguese association of stroke survivors also highlights that all efforts have to be done to maintain rehabilitation care, which should be considered in future decisions as an essential health service for priority cases, and warns stakeholders that it is crucial to avoid the serious consequences that inappropriate stroke care has in the prognosis of affected patients, which can potentially lead to even more devastating consequences that those related with the coronavirus infection itself.
The EU funded TENSION project examines the effects of mechanical clot retrieval in a large group of patients in whom the benefit of thrombectomy is uncertain. TENSION studies if it is safe and effective to do thrombectomy in patients with so-called ‘extended lesions’, that is, larger areas of damaged brain when compared to the previous studies. Patients are also able to enroll in the trial up to 12 hours after their symptoms first showed. This extends the treatment to a larger group of patients: including, for instance, more of those who have a stroke during the night-time and are more likely to be delayed in getting to hospital. We interviewed Dr. Claus Simonsen from the Department Of Neurology, Aarhus University Hospital, Denmark.
SAFE: If you were to explain the project’s aim to a person without any medical background, what would you say?
CS: Stroke treatment is advancing. The majorities of stroke are caused by an occlusion of an artery. Removal of the clot/occlusion means that the patient will do much better. If the clot is big, we can remove it with a catheter. This is a great idea, if the damage to the brain is small. If there is more advanced damage, we don’t know, if the patient benefit from removal of the clot. The project will try to prove, that these patients also benefit. Then we can treat and help more patients.
SAFE: What types of partner do you need to carry out a project like this?
CS: To be a partner in the project, you need to have a thrombectomy centre. And you probably need a relatively big catchment area. There are not many patients with advanced damage who at the same time fulfil all inclusion criteria. Your staff should have some experienced in trials and inclusion in trials. A research nurse would be very good.
SAFE: Can you briefly describe your role in the project?
CS: I am the PI (principal investigator) in Denmark. I am in contact with the trial managers and with the monitors in Denmark. I try to include more Danish centres in the trial. And I try to increase inclusion at my own centre by reminding colleagues about the trial.
SAFE: What (if any) are the difficulties with carrying out the work?
CS: Difficulties: To keep everyone informed about the project. To randomize patients that we (sometimes) would have treated. To get consent from relatives in a critical situation. (We randomize without consent in Denmark, but we need consent from the relatives for the patients to stay in the project.)
SAFE: What personally attracted you to be in this project?
CS: Acute stroke treatment is my big research interest. This topic (treatment of patients with big strokes and advanced damage) is one of the most interesting areas in stroke treatment.
SAFE: When this project ends, what do you expect to change, i.e. how it will reflect on stroke treatment?
CS: I think the project will be positive. (Otherwise, I would probably not contribute.) So I think we can treat more patients after the project is over. Or we will be more informed when we are making treatment decisions for this patient group.
The TENSION trial has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 754640.
Image credit: Frederik Denorme
The Exercise Guide for stroke survivors in the Netherlands was developed some years ago, in collaboration of the medical experts from the University of Utrecht, other allied stroke professionals and Dutch stroke survivors. This booklet is usually being given to patients during their stay in the hospital or while in rehabilitation. The guide itself will be free (temporarily) for everybody. Small SSO’s can get the rights to translate in their own language for free, while the larger SSO’s will be asked to pay a small fee.
“In these crazy Corona times most Dutch stroke survivors do not get physical therapy anymore, as everything is on hold or locked down. It is important for everybody, but especially for them, to keep exercising and we are convinced this guide is a great solution for that” says Monique Lindhout, the Director of Hersenletsel.nl, adding that “Sharing with others in need and helping them in times of crisis not only makes us feel good, it also brings a real-life change for the stroke patients affected.”
The Exercise Guide is a practical tool for patients to start exercising independently from day one after a stroke. The exercises are all easy to perform either lying in bed or sitting in a chair. The exercises are divided into three levels of complexity each indicated by a different colour, and, as much as possible, everyday activities are included in the given exercises.
The benefits in using this exercise guide
According to therapists, nurses and patients, the exercise guide is a powerful and low-cost tool to intensify rehabilitation treatment for patients after stroke without the need for extra personnel.
The front cover of the Exercise Guide
How to get your copy of the Exercise Guide e-book?
The e-Version of this guide will be only temporarily available for free. Hurry up and click here to follow instructions and download your own copy of the Exercise Guide.
The exercise guide was developed in 2010 in the Netherlands by the University Medical Centre Utrecht and Rehabilitation Centre De Hoogstraat in collaboration with professionals of seven hospitals, rehabilitation centers and nursing homes and patients of the Dutch stroke patients association. In 2013, the exercise guide was translated into English. Currently the guide is being translated in Vietnamese and Thai. The guide is also available as an app (only in Dutch) for Apple and Android. The app is temporarily available for free.
For contact and suggestions about the Exercise Guide:
Monique Lindhout | firstname.lastname@example.org
Featured image by Niek Verlaan from Pixabay
The European Stroke Organisation (ESO) cautions against the consequences of the Coronavirus-Crisis on stroke care.
Basel, 08 April 2020 – Each year, 1.5 million Europeans have a stroke. Two to three of every 10 patients die as a consequence of stroke, and about one third remain dependent on the help of others. The likelihood of a favourable outcome is critically dependent on patients presenting promptly after symptom onset and on hospitals providing immediate access to optimised stroke care. This includes treatments for vessel recanalisation, securing brain vascular malformations, specialised stroke unit care, secondary prevention, and rehabilitation.
In a survey among 426 stroke care providers from 55 countries, only one in five reported that stroke patients are currently receiving the usual acute and post-acute care at their hospital. The lack of optimal care is likely to lead to a greater risk of death and a smaller chance of a good recovery.
There is no reason to assume that the incidence of stroke declined since the onset of the COVID-19 crisis, but in many countries, fewer people with symptoms suggestive of stroke present to the hospital. This may be due to a range of factors, including fear to become infected with COVID-19 in the hospital or the assumption that doctors are too busy treating patients with COVID-19 to treat patients with stroke.
ESO supports the efforts to manage to COVID-19 pandemic and to treat patients with COVID-19, but emphasises that patients with stroke symptoms should still present to hospital as soon as possible and that efforts should be made to maintain the usual level of stroke care, including intravenous and endovascular reperfusion strategies, irrespective of the patient’s COVID-19 status, to avoid unnecessary ‘collateral damage’ through inadequate treatment of this often disabling or life-threatening condition.
Issued by the ESO Executive Committee.
Image by Gerd Altmann from Pixabay