Message from the SAFE President

Message from the SAFE President

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

SAVE THE DATE – European Life After Stroke Forum, 19 November 2020, Barcelona, Spain

SAVE THE DATE – European Life After Stroke Forum, 19 November 2020, Barcelona, Spain

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

SAFE Annual Report 2019

SAFE Annual Report 2019

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

SAFE’s new Director General commenced in post on the 12th August 2019

SAFE’s new Director General commenced in post on the 12th August 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.

SAFE’s new Director General commenced in post on the 12th August 2019

Testimonial Exhibition at the World Stroke Congress October 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…)

2nd webinar in the Life After Stroke Series open for registration

2nd webinar in the Life After Stroke Series open for registration

The second in our series of free interactive webinars on Life After Stroke – Intimacy and sex after stroke: how to start the conversation, on 20 May, is now open for registration  bit.ly/3edVHxp

Intimacy and sex are important. However, for many stroke survivors this an uncomfortable subject with many struggling to come to terms with their ‘new’ body or identity and coping with the implications of this. Additionally, many healthcare professionals do not feel confident or able to talk about sex or to know how to best advise and support patients or their families.

This session will share insights from several perspectives and suggest how we might begin positive and open conversations about intimacy. It also underlines the need for greater awareness about sex and intimacy after stroke.

Register at bit.ly/3edVHxp

If you missed our first event, Priorities, challenges and ways forward, you can now catch up on demand at elasf.org

Programme for Life After Stroke webinar on 12 March finalised

Programme for Life After Stroke webinar on 12 March finalised

Join speakers Bo Norrving, Juliet Bouverie, Caterina Pistarini and Liam Healy at the first webinar in the Life After Stroke series on 12 March 9.45 to 11.30 CET.

Also joining the session is Alexia Kountouri, Ambassador for Stroke in Cyprus, who will share her personal experiences of life after stroke.

‘The Life After Stroke webinar series promises to deliver a truly 360-degree view of the best in current practices in stroke from the perspective of all involved. One of those events you will want to say “I was there”’ says Nuno Ferreira, Associate Professor, University of Nicosia and European Life After Stroke Forum Committee Member

Find out more about the session here: https://bit.ly/2NilTNl

Register for free here https://bit.ly/3cXlJFR

 

PRESTIGE-AF Stroke and Atrial Fibrillation Trial in Italy

PRESTIGE-AF Stroke and Atrial Fibrillation Trial in Italy

Professor Valeria Caso, stroke neurologist and former president of the European Stroke Organisation and Dr Fracesco Corea recently presented on the full operation of the clinical study with 15 participating centres in Italy.

This is part of the PRESTIGE-AF research project which is a European Union funded PRESTIGE-AF stroke research project to undertake a major clinical trial across Spain, Italy, France, the UK, Germany, and Austria. The trial is investigating recommended medication for stroke prevention in patients with atrial fibrillation.

The webinar is available here

Co-chair of the Life After Stroke webinar on 12 March announced

Co-chair of the Life After Stroke webinar on 12 March announced

We are delighted to introduce you to our new co-chair for the Life After Stroke Forum meeting on the 12 March 2021

Jurg Schwyter will be joining the opening webinar session, Life after stroke: priorities, challenges and ways forward, as co-chair. As a linguist, stroke survivor and aphasiac, Jurg wants to reach out about the impact of a stroke on language, communication and multilingualism.

Find out more about the session here: https://bit.ly/2NilTNl

Register for free here https://bit.ly/3cXlJFR

Programme for the 1st in our life after stroke series of webinars released

Programme for the 1st in our life after stroke series of webinars released

Life after stroke: priorities, challenges and ways forward on 12 March 2021 09.00-10.30 GMT

In this opening session we will hear from Bo Norrving (Sweden), Juliet Bouverie (UK), Liam Healy (Ireland) and Caterina Pistarini (Italy) on people’s experiences of the impact of stroke before and during the pandemic, and how healthcare and support services have adapted to meet the challenges of post-pandemic stroke care.

Register for FREE here

Click here for full programme

Programme for the 1st in our life after stroke series of webinars released

Launching Life After Stroke Series of Interactive Webinars for 2021 – Shining a spotlight on life after stroke

Today we are launching a series of free interactive events to build the life after stroke healthcare, research and patient community, stimulate debate and ultimately improve life after stroke care and build interest for SAFE’s 1st European Life After Stroke Forum on 11 March 2022. You can find out more information here

Register for our first webinar, Life After Stroke: Priorities, opportunities, and ways forward on 12 March 2021 10.00-11.30 CET here

SAFE’s new Director General commenced in post on the 12th August 2019

Postponement of the 1st European Life After Stroke Forum 12 March 2021

The world has been transformed over the last year due to the pandemic and our healthcare systems have been put under tremendous strain.

SAFE has listened to the stroke clinical community in Europe and we have decided to postpone our full virtual conference planned for 12 March 2021 until 11 March 2022.

Life after stroke is a priority for SAFE and we’ll be continuing our life after stroke programme of activities during 2021 to demonstrate our commitment to make life meaningful after stroke.

We will be planning a series of events during 2021 that will focus on life after stroke, to build and strengthen our stroke community and ensure stroke survivors voice is heard.

Our first event on 12 March 2021, will be one of many events that will address the issues around life after stroke to build up interest, enthusiasm and momentum in advance of the full conference meeting in March 2022.

More details to follow shortly.

WHO launches updated clinical management guidance for COVID-19, including additional recommendation on stroke

WHO launches updated clinical management guidance for COVID-19, including additional recommendation on stroke

COVID-19 is associated with neurological manifestations, including stroke. In many cases, these have been reported even without respiratory symptoms. COVID-19 has been associated with acute cerebrovascular disease (including ischaemic and haemorrhagic stroke). 

Patients presenting with rapidly developing neurological symptoms suggestive of stroke should be evaluated as soon as possible and standard stroke protocols should be followed including systemic thrombolysis and/or intra-arterial thrombectomy, if indicated.  

Standard IPC measures must be followed during the clinical evaluation, neuroimaging or procedures for patients with stroke. The guidance also remarks that strokes can be missed in severely sick or unresponsive ICU patients and a low threshold for further evaluation (including neuroimaging) is recommended for acute neurological worsening. Read the full guidance here COVID-19 Clinical management: living guidance (who.int)