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…)

Call for abstracts for our European Life After Stroke Forum, 10 March 2023

Call for abstracts for our European Life After Stroke Forum, 10 March 2023

The first European Life After Stroke Forum will be in Barcelona, Spain on Friday 10 March 2023. The Forum is the place to find the latest evidence and research in life after stroke.

About the Forum

The Forum’s aim is to build the life after stroke healthcare, research and patient community, stimulate debate and build our collective knowledge in life after stroke.

Our ultimate goal is to improve the quality of life after stroke for the nine million people living with stroke in Europe.

Abstract submission

We are now seeking abstracts for the Forum, giving those interested an opportunity to present either a 10-minute oral presentation or a poster presentation.

We are looking for applications in two areas:

  • Scientific applications: for completed or ongoing trials and studies in the broad area of life after stroke
  • Grab and Steal: to share experiences of service developments in life after stroke where these original ideas and innovative practices could be used by others.

You have until 10 January 2023 to submit your abstract and we look forward to receiving your submissions.

Find out more bit.ly/3X0Je5x

Abstracts will be reviewed and all submissions will receive their notification letter by Friday 10 February 2023.

Stroke research to find out if everyday drugs to treat stroke complications could save lives comes to an end

Stroke research to find out if everyday drugs to treat stroke complications could save lives comes to an end

The Precious (Prevention of complications to improve outcome in elderly patients with acute stroke) research project, funded by the European Union’s Horizon 2020 research and innovation programme (grant agreement No 634809), ends at the end of November 2022.

The research began in June 2015 to find out if off-the-shelf treatments could reduce complications in older patients suffering from acute stroke and ultimately reduce lives lost to stroke and improve quality of life.

By the end of the clinical trial, almost 1500 stroke patients participated in the research across nine European countries. Researchers are now analysing the results which are hoping to be published in 2023.

Last year, SAFE interviewed Dr Bart van der Worp, UMC Utrecht, Netherlands, project coordinator about the research for Brain Awareness Week, read the interview here

Now, as the research closes, SAFE follows up with Bart for an update:

SAFE: What are you hoping the Precious research will show?

Bart: We hope that the analysis of the patient data will reveal answers to the following questions:

  1. If we are able to prevent infections and fever in the first four days after stroke with simple, safe, and inexpensive drugs, will this reduce the risk of death or dependency after stroke; improve quality of life; and reduce the length of hospital admission and healthcare costs?
  2. Does the prevention of vomiting with a simple and safe anti-emetic drug reduce the risk of pneumonia?
  3. Does the pain killer paracetamol also reduce blood pressure after stroke?
  4. Are there differences between countries in treatment restrictions after stroke, such as do-not-resuscitate orders, and do these restrictions increase the risk of death?

SAFE: When are you hoping to have the results of the trial?

Bart: The investigators across the nine participating countries are currently completing follow-up and collecting the most recent patient data. Analysis of the most important data will be completed by the end of this year, and we hope to present the main trial results at the European Stroke Organisation Conference in May 2023.

For more information visit https://www.precious-trial.eu/

Registration is open for our first in person European Life After Stroke Forum on 10 March 2023

Registration is open for our first in person European Life After Stroke Forum on 10 March 2023

We are pleased to announce that our first in person European Life After Stroke Forum is now open for registration and abstract submission.

The European Life After Stroke Forum, 10 March 2023, Barcelona, Spain, is the place to find the latest evidence and research in this neglected area of stroke care.

About the Forum  

The Forum’s aim is to build the life after stroke healthcare, research and patient community, stimulate debate and build our collective knowledge in life after stroke.

Our ultimate goal is to improve the quality of life after stroke for the nine million people living with stroke in Europe.

Registration

Register before the end of the year to benefit from our early bird rates. Book your place here bit.ly/3UDIuli

Programme overview

Our forum programme covers a range of topical issues in life after stroke and will include keynote presentations by eminent speakers supplemented by contributed talks and a poster session.

See our initial programme at bit.ly/3GeAgvr

Abstract submission

We are now seeking abstracts for the Forum, giving those interested an opportunity to present either a 10-minute oral presentation or a poster presentation.

We are looking for applications in two areas:

  • Scientific applications: for completed or ongoing trials and studies in the broad area of life after stroke.
  • Grab and Steal: to share experiences of service developments in life after stroke where these original ideas and innovative practices could be used by others.

You have until 10 January 2023 to submit your abstract and we look forward to receiving your submissions. Find out more bit.ly/3X0Je5x

Abstracts will be reviewed and all submissions will receive their notification letter by Friday 10 February 2023.

Hotel bookings

The Forum will be held at the Hotel Catalonia Barcelona Plaza. The hotel will offer delegate accommodation at €140 per night. To book, please email plaza.reservas@cataloniahotels.com and provide your name, your check-in and check-out dates, and mention the name of our event , ELASF2023.

Other accommodation can be found here

Key dates

31 December          Early bird rates end

10 January              Deadline for abstract submission

10 February            Abstract notification

Addressing gender-related issues and bias in the prevention and treatment of neurological conditions

Addressing gender-related issues and bias in the prevention and treatment of neurological conditions

Join a hybrid event on Addressing gender-related issues and bias in the prevention and treatment of neurological conditions that will take place on Tuesday, 29 November from 13:00 to 15:00 CET.

The event is hosted by the MEP Interest Group on Brain, Mind and Pain (BMP) – an initiative of the European Federation of Neurological Associations (EFNA) and Pain Alliance Europe (PAE).

Gender-related issues and bias can have a negative impact on women’s health including needs being overlooked, conditions being under-diagnosed/ misdiagnosed and delays in treatment.

Hosted in the European Parliament by MEP Sirpa Pietikäinen (EPP, FI), high-profile speakers, including healthcare professionals, patient representatives, policymakers and academics, will lead the discussions.

You can register here before 21 November 2022. Please note that due to the limited capacity of the room, participants will be accepted on a first come, first served basis. However, you can register here to access the event’s live-stream instead.

One day until our last event in the European Life After Stroke Series 2022

One day until our last event in the European Life After Stroke Series 2022

Not registered yet for the #LifeAfterStroke webinar tomorrow? Join all those who already signed up for this unique and popular free online event on Wednesday 9 November, from 10.00 CET. It’s not too late to join us and learn more about getting back to work, fatigue and physical activity after stroke.

Register at https://bit.ly/3BSVPQc

This event is accredited by the European Accreditation Council for Continuing Medical Education (EACCME®).  Delegates will be awarded three European CME credits (ECMEC®s) for attending all three sessions.

Emerging issues on targeted drug delivery – event 28 November 2022

Emerging issues on targeted drug delivery – event 28 November 2022

The ANGIE project aims to change the way we practice medicine by developing micro-robots for localised, targeted drug delivery to unblock blood vessels and fight stroke from within.

This ground-breaking project is funded by the EU and aims to develop nano-surgeons that will enter the body to treat blood clots.

Questions around issues related to communication, ethics, law, policy, and education will be discussed before the newly developed technology is released. This online event will discuss new market opportunities in the pharmaceutical industries.

Join the meeting via Zoom on 28 November 2022, 16.00 – 18.00 CET.

https://h2020-angie.eu/event/public-event-emerging-issues-on-targeted-drug-delivery-online-meeting/

One day until our last event in the European Life After Stroke Series 2022

European Life After Stroke Series event on 9 November gains accreditation

The European Life After Stroke Forum Series event on Wednesday 9 November has been accredited by the European Accreditation Council for Continuing Medical Education (EACCME®) with three European CME credits (ECMEC®s).

With only a week to go, it is not too late to book your free place for this online event.

The event runs from 10.00 to 15.00 CET, covering sessions on getting back to work, fatigue and physical activity after stroke.

Programme topics cover getting back to #work, #fatigue and #physicalexercise #stroke

Join us – sign up here https://bit.ly/3BSVPQc

 

Only two more weeks to go to our European Life After Stroke online event, 9 November

Only two more weeks to go to our European Life After Stroke online event, 9 November

Our second and final free online Life After Stroke event of 2022 is only two weeks away, on Wednesday 9 November.

If you have not registered yet,  you can book your FREE place at https://bit.ly/3BSVPQc

There are three interesting sessions covering key issues faced by people living with stroke: getting back to work; fatigue and getting active. Chaired by Dr Carina Persson (Sweden), Professor Avril Drummond (England), and Juliet Bouverie (England) respectively. Each session will include a mix of presentations from stroke survivors and academically active speakers in the field of life after stroke.

‘There are many issues for people after a stroke including getting back to a good quality of life that is worth living. This event will focus on three areas that are really important to help those living with stroke get their lives back on track. This event is for anyone with an interest in life after stroke and keen to improve services and care post stroke and rehabilitation.’

SAFE Director General, Arlene Wilkie

If you missed our other events in the Live After Stroke Series, you can now catch up on demand at elasf.org