Nov 6, 2019
SAFE’s Annual General Assembly will take place at the Sheraton Porto Hotel, R. do Ten. Valadim 146, 4100-476 Porto, Portugal, 29 November 2019. We would be delighted if members were able to attend.
The order of business will be as follows:
08.30-09.00 Registration
09.00-09.05 Opening welcome, Jon Barrick, President SAFE
09.05-10.00 Review of the year and forward view
10.00-11.00 General Assembly
11.00 Close
For further information, please see HERE in the Members’ Section and contact SAFE Secretariat at mail@safestroke.eu
Featured photo: SAFE General Assembly 2018, Berlin, Germany
Nov 6, 2019
Written by Amanda Jerelyn
Recovery after a stroke is very essential for a patient to make his coming back to life easy and simple for himself and his caretakers. Living a normal life after a stroke is hard to think about for many sufferers. People tend to get negative once they come back to their new life and do not accept the changes positively.
The story of Marina Krsmanovic from Serbia is very powerful in terms of reclaiming a life after stroke. Coming back to your life after recovery is a new beginning for you. It is completely achievable if you have a positive mindset. You can reclaim a normal life by following these expert approaches:
Returning to routine
It is barely impossible for some patients to accept the reality that their routine will not be the same anymore. Reclaiming life after stroke involves some drastic routine changes. Survivors should always believe in their goodwill in adopting major changes around them. Accepting your fate is the first step towards success in your new life. A patient who happily adapts to these routine changes will lead a life with fewer worries and more relaxation.
Positive perspective
Setting a positive approach towards everything that happens in your life is the key to happiness. Especially in your condition, positive thinking will only make you bloom. Once you accept your life as it is, things will get easier and better understandable by you. A positive mindset will also let you be your own motivator at times you’re alone.
Vernell Bradshaw is a stroke survivor. His motto is attitude is everything, and quite astonishingly, it is true. He lives his life with willingness and readiness. He also said that he never questioned why he had to go through it, but instead, he accepted it and gained enough strength to move on with his life enthusiastically.
Meditation is a great healer
After a stroke recovery, patients are highly advised by doctors to take care of themselves and make it a priority. Taking care of you means making sure all your needs and wants are being fulfilled. And your needs should firstly include taking out some time for meditation. Doing meditation routinely is an expert approach to live a life normally after a major stroke. Now medication may include doing light walk in the morning, doing yoga outdoors or indoors, or doing breathing exercises.
Physiotherapy benefit a lot
Individuals suffer from many symptoms like loss of memory, losing willpower, and losing the power of control that mainly includes limb control, after a stroke. Physiotherapy comes as very helpful in this particular case.
Physiotherapy mainly means a treatment for recovering patients that consist of physical techniques. It includes light exercises, massages, and treatments by heat to help with internal and external body movement with easiness.
So it is another expert approach to win back your life after stroke and start living it naturally.
Dressing method transformation
After a stroke, simple tasks such as dressing up or bathing become a hassle for survivors. Their frustration is genuine, but the expert approach would be to deal it with mindfulness and give it time.
Changing your way around things might help. For example, you can change clothes easily while sitting on a chair or bed instead of standing up. You can also choose to wear loose clothing so it can be less of a hassle. Putting your affected hand in the shirt’s sleeve first will give you more grips for wearing it properly.
Modify bathing equipment & tools
Now bathing is the second hardest task, but it can be made simpler by following some pro-tips. Always remember that baths are harder to take after a stroke, so you should opt for showers. Replace your usual bathmats with suction-cupped bathmats to avoid slipping. Always keep someone or a bell in your reach to have instant help when in an emergency.
Avoid driving at maximum
Driving after a stroke can’t be easy or normal. In some extreme cases, it is not advised for some patients after recovery by their physiotherapists and doctors. But if you must, then firstly you need to have the authorities informed and have a test ride with them for surety. Then you need to modify your car according to your hand, which is not paralyzed. Safety tip is to have someone ride along with you at all times to ensure you don’t accidentally meet some severe strokes.
Attending group sessions
People after recovery from a stroke become bitter and angry because of isolation and because they can’t do things they used to do before by themselves. It is entirely understandable, and an expert approach would be to attend sittings. Sessions related to life after stroke will brighten-up your spirit. Because you will now feel linked to many others and feel relaxed knowing you’re not suffering alone in this situation. Attending group sessions will rise-up your morale and motivate you towards all the positive things in life to cherish.
Keep challenging yourself
A patient who survives a stroke and comes home after recovery needs the most challenges in their life to keep moving forward. Think of it as you always come first in all the racing marathons and suddenly racing marathons stopped happening, how would you feel? You’ll feel stuck in between. So daily challenges, no matter big or small, keeps your life going on a steady path. So survivors should always keep looking for problems and try their best to overcome them effectively.
These were some useful approaches that you can consider after recovering from a stroke. And life is undoubtedly reclaimable after a stroke. You just have to be willing to live it fully. Living a normal life is not a dream, but it’s a mission for survivors, and you’ll get through with it too.
Author bio:
Amanda Jerelyn is currently working as a health & wellness tutor at King Essay.
Her professional writing services include nursing dissertation through which she gained much popularity in her field and she occasionally contributes content to Guide2Write. Amanda writes with full contribution and enthusiasm, which makes her stand out from the rest.
Nov 1, 2019
Austin Willett, Chief Executive Officer, Different Strokes
“Stroke is still thought of us something that only happens to elderly people. Yet more than 25% of strokes happen to people who are of working age and younger, and in the specific 35-54 age range, strokes are increasing by approximately 2% per year. Despite this, when stroke is portrayed in the media it is almost always in the context of an older person suffering a stroke, and this further entrenches the view that it is something that is not experienced by younger people. At Different Strokes we have helped to tackle this misconception, and a recent Stroke Association television advert also featured a number of young stroke survivors. ” said Austin Willett, Chief Executive Officer at Different Strokes, a stroke support organisation from the UK.
SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?
AW: Clearly though there is still a very long way to go, demonstrated by the results of a survey which we commissioned this year. In this survey, 84% of people thought that only 1 in 50 strokes happened to people under the age of 65, while it is actually more than 1 in 4.
The marginalisation of stroke survivors is an ongoing problem. Stroke is especially isolating for working age people; often with young families to support and relying on employment but suddenly unable to work. Ensuring that there is much greater recognition of younger stroke is, for us and the people we support, the most important issue.
SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?
AW: There are no easy answers to this, and because stroke affects everyone differently there is not a solution that will work for all stroke survivors. But broadly speaking, we would like to see:
- Much greater understanding of the prevalence of stroke in younger people. Where there is ignorance about this issue, this can lead to misdiagnosis. Too often is a stroke among this age group classified as a ‘brain bleed’ or something other than stroke. This can lead to people waiting for extended periods of time before receiving appropriate stroke rehabilitation, or not receiving any at all.
- Rehabilitation which focuses more on the specific needs of younger stroke survivors. Younger stroke survivors must learn to accept newfound physical, emotional and cognitive limitations, as well as changes to virtually every aspect of life – wellbeing, perceived quality of life, communication, mobility, employment, independence, social life and relationships. Rehabilitation needs to reflect this, and not merely be focused on the basic functions of self-care which permit a stroke survivor to return home.
- Recognition that ongoing recovery of stroke is a long-term, and sometimes lifetime, process. Too often we have heard stroke survivors being told that they have plateaued to explain why their post-stroke rehabilitation has been discontinued, and a further myth about stroke is that after 6 months post-stroke ongoing recovery will cease. But post-stroke recovery trajectories vary and shift over time, and at Different Strokes we see stroke survivors of working age return to work and rediscover skills and interests which buck their disabilities long after their stroke.
SAFE: Please tell us more about your organisation.
AW: Different Strokes is a registered charity which supports younger stroke survivors and their families, primarily of working age (18-65). This group has historically been overlooked, receiving limited rehabilitation and struggling to find the emotional support combined with the practical help required to help reclaim their lives. Different Strokes was founded in 1996 to address this, and over the last 23 years has made huge steps in raising awareness of young stroke.
Amongst the services we provide are a network of peer support and exercise groups, an online support group, a telephone information line, printed materials, and age appropriate resources for children whose Mum or Dad has had a stroke.
We also seek to raise awareness of issues that specifically effect younger stroke survivors and will work collaboratively with third parties where it is in our mutual interests to do so.
The ethos of Different Strokes is one of ‘survivors supporting survivors’, with peer support running through all that we do. Half of our staff and trustees are stroke survivors, as are the vast majority of volunteers who run local groups and support us in other ways.
We receive no funds from central or local government, so have to raise all our funds from individual donations, fundraising events, legacies, grants from trusts and foundations, corporate support, and self-generated income such as through our online shop.
*Image source: https://differentstrokes.co.uk/stroke-information/information-pack/
Oct 29, 2019
Today is the World Stroke Day and the global campaign’s slogan is „1 in 4 of us will have a stroke. #DontBeTheOne“.
SAFE supports the global campaign, as we do every year. At the same time, we recognise and acknowledge the struggle of those among us who were unlucky enough to become #theOne from the World Stroke Day slogan.
We represent the voice of stroke survivors and their families through Europe.
Believing that all these voices must be heard, SAFE organised a series of interviews with the stroke support organisation representatives from around 30 European countries. Today we are able to present you with their unique insight into life after stroke issues, country by country.
We hope you would help us spread the news and share these country insights. Click HERE to open and download the compilation of interviews with key people from European stroke support organisations.
Oct 29, 2019
Brussels, October 29th, 2019– Based on insights gathered over the years, the Stroke Alliance for Europe (SAFE) is announcing the first ever European event dedicated solely to life after stroke.
Research and medical attention into the areas of primary prevention and intervention at the point of stroke occurring is an understandable priority, yet for millions of people surviving a stroke results in poor quality of life which may last for decades. In all of this, we must not forget that a life saved must also be a life worth living, and in various parts of the world there is an increasing realisation that the care pathway for stroke needs to take a more integrated approach.
To address this issue, SAFE has committed to organising a first of its kind event in Europe in 2020 – a Life After Stroke forum, for scientists, stroke survivors and their carers, medical professionals and health policy makers.
SAFE has recruited Professor Avril Drummond from School of Health Sciences, University of Nottingham, UK, as the role of Chair of the Scientific Committee, and we had the pleasure of talking to her about this this key event.
Professor Avril Drummond
Professor Drummond, you chaired the life after stroke domain within the Stroke Action Plan for Europe 2018 – 2030. What is your takeaway from that experience?
I think, first and foremost, the fact that we have this domain in the Stroke Action Plan for Europe included is a fantastic step forward. The recognition of the needs of stroke survivors and their families after their hospital and rehabilitation care, has not previously been given the focus it deserves.
It is in the period after return to the home that the struggle for a new life occurs, which is often characterised by stroke survivors as being cast adrift to find their own way, through maybe decades of cognitive, communication, relationship, financial, mental and physical health issues, complications and changes.
However, there is a lack of research studies into life after stroke covering the entire lifespan and this is something that needs to change. There are growing numbers who believe that pain, depression, relationship breakdown, secondary prevention effectiveness, financial, vocational and stigma issues, as well as the ongoing matters of daily living, mobility, communication, cognition and the absence of ongoing review and support are worth being researched and addressed.
By creating the European Life After Stroke Forum, we are recognising the need to consider this neglected area of the care pathway in a holistic fashion. In addition, the event will put a human face on the consequences of stroke, and on the consequences of not addressing prevention and treatment in the first place.
We are honoured to have you chairing the expert committee for this event. Can you give our readers more insight into the European Life After Stroke Forum?
It is still very early days, but the first steps have been made. The plan is to hold this event towards the end of 2020. We are forming a group of people committed to creating this event, as an opportunity for research, policy, advocacy, or support oriented individuals to come together, to share knowledge and network.
We expect to be able to announce more details on this event’s programme, speakers and topics in the summer of 2020. For more information stay tuned and follow the news on SAFE website.
Oct 26, 2019
Fundació Ictus and the four associations who represent the several local patient groups from Catalonia met last Saturday, 26th October to celebrate the World Stroke Day all together. It was the first time Fundació Ictus and the four associations celebrated together that day in Lleida, one of the four major cities of the country.
Xavier Trias, Fundació Ictus’ president, in the middle of the image, surrounded by the four associations who represent patients in Catalonia
All of them read an ensemble manifesto to speak out all people’s necessities related to this disease. In Catalonia, stroke is the first cause of mortality among women and the second one in men. Moreover, stroke is the principal cause of disability, so it becomes a health and social problem for people who suffered one and their families.
People from the four Catalan patient associations read an ensemble manifesto
Xavier Trias, Fundació Ictus’ president, pointed out the importance of collaboration of all the Catalan association that they should work together in order to be stronger. Furthermore, Trias remembered the relevance of prevention to be successful in avoiding the disease and the importance of rehabilitation to minimize long term damages. In the same meeting, there were politicians who listened very carefully to all the demands expressed.
This event came after another one, which took place last Wednesday 23th October in Barcelona. One of the most important concert halls, Luz de Gas, held a live music concert in support of stroke survivors.
The concert hall Luz de Gas, where the live music concert was held in support of stroke survivors
Oct 25, 2019
Oruen, CNS medical publication and audio-visual platform, would like to recommend to your attention the latest round table discussion about learnings from the ESUS trials – Jesse Dawson, Martin Grond & Maurizio Paciaroni.
Faculty:
Jesse Dawson MD, Professor, Institute of Cardiovascular & Medical Sciences University of Glasgow, Scotland
Martin Grond MD, Professor, Department of Neurology Kreisklinikum Siegen, Teaching Hospital of the University of Marburg, Germany
Maurizio Paciaroni MD, Neurologist, Stroke Unit and Division of Cardiovascular Medicine, Santa Maria della Misericordia Hospital, University of Perugia, Italy
This video discusses the role of NOACs for secondary prevention of stroke in the setting of embolic stroke of unknown source
Following completion of this activity, learners will be able to:
- Outline key features and results of the ESUS trials, with focus on NAVIGATE ESUS and RE-SPECT ESUS
- Recognize differences in study outcomes
- Summarise implications of ESUS as a concept for use in clinical practice
Oct 25, 2019
“Stroke survivors in the UK are going without vital care and support. There are 1.2 million stroke survivors across the UK, but sadly 45% of people feel abandoned after leaving hospital” says Juliet Bouverie, Chief Executive of the Stroke Association UK.
SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?
JB: We need to put the spotlight on long-term stroke care and rehabilitation. As anyone dedicated to helping stroke survivors rebuild their lives will recognise, the condition is extremely complex. People affected by stroke need rehabilitation that covers emotional support, help with finances, support services for carers, as well as physiotherapy, and speech and language therapy. Sadly, a recent Stroke Association survey of stroke survivors across the UK found that, in the aftermath of their stroke, only 18% of stroke survivors were confident that they would get enough support to make a good recovery. And 80% of stroke survivors told us they initially feared they would be sent to a care home.
Stroke causes a wide range of physical, communication, emotional and cognitive difficulties, and more than half of survivors report fatigue, memory and concentration difficulties, anxiety or low mood. Time and again we’ve seen thousands of people adapt to a new life after stroke. But it’s only possible with the right specialist support – and a ton of courage and determination. But the sad truth is that thousands of stroke survivors do not receive the support they need with their recovery when they leave hospital. There are huge regional variations in stroke support and care, which leaves stroke survivors at the mercy of a postcode lottery. On average, stroke survivors receive less than half the amount of rehabilitation recommended by national guidelines and many report feeling ‘abandoned’ after leaving hospital.
We know there are hospitals, stroke units and dedicated professionals leading the way for stroke care and support right across the UK. But too many stroke survivors are being let down because they aren’t given ongoing support to rebuild their lives. We want everyone affected by stroke to have the rehabilitation and long-term support they need, no matter where they live. No stroke survivor should be denied the chance to rebuild their life.
SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?
JB: We know that the number of strokes is set to increase, and that too many stroke survivors aren’t getting access to the services they need to make their best possible recovery after they leave hospital. At the moment, we know there’s too much variation in the quality and coverage of care: too many of therapies recommended by clinical guidelines aren’t available across the country.
Stroke is also a hugely expensive condition, costing around £26bn a year across the UK. If we don’t act to roll out some of the actions we know can stop stroke before it strikes, save lives and prevent serious disability, the costs will spiral. We can’t afford not to act.
We want everyone affected by stroke to have access to the support they need and should expect, in line with national guidelines. That’s why we’re working across England, Scotland, Wales and Northern Ireland to support and drive changes which will improve the lives of people affected by stroke. In England, for example, we’re working closely with NHS England to deliver the Long Term Plan for the NHS, which includes the National Stroke Programme.
This Programme supports health and care services to make improvements from prevention and treatment right through to rehabilitation and long-term support after leaving hospital, including psychological support for stroke survivors. Our focus now is to ensure promised improvements are delivered.
SAFE: Please tell us more about your organisation.
JB: We’re here to support people to rebuild their lives after stroke. We believe everyone deserves to live the best life they can after stroke. We want to drive better outcomes in stroke prevention, treatment and lifelong support for everyone affected by stroke
We provide specialist support, fund critical research and campaign to make sure people affected by stroke get the very best care and support to rebuild their lives. The Stroke Association also offers vital support and information through our Stroke Helpline. My Stroke Guide is our online community of over 11,000 people affected by stroke, which many people said helps with their recovery.
Rebuilding lives after stroke is a team effort. It takes the determination of stroke survivors and carers, the generosity of supporters and the dedication of the healthcare and research communities to get there. We work hard to connect everyone in the stroke community so that people can live the best life possible after stroke. We have a number of stroke clubs and groups which provide essential long-term peer support to stroke survivors, carers, family and friends.
The Stroke Association’s campaign, Rebuilding Lives, aims to change perceptions about stroke, and reach more people who need support with their recovery. We hope the campaign, which includes TV advertising, will help us get our message out to people who need help and support, and raise awareness that it’s possible to rebuild lives after a stroke. To find out more, visit https://www.stroke.org.uk/rebuilding-lives
Oct 20, 2019
Author: Anna Tsiakiri, PhD, Psychologist from the Greek stroke support organisation, Hellenic Alliance for Stroke
This weekend, the Hellenic Alliance for Stroke in cooperation with the Hellenic Neurological Society, Postgraduate Program “Stroke” of Democritus University of Thrace, Hellenic Society of Cerebrovascular Diseases, Department of Educational and Social Policy of Macedonia University co-organized a two-day scientific event on 19th & 20th October 2019.
The scientific part of the event consisted of lectures from distinguished speakers specialised in Stroke, both in terms of medical care and rehabilitation.
The informative event, that was addressed to general public, aimed to provide useful information about preventing Stroke- how to recognize stroke symptoms, how we should react. A special tribute was made to stroke survivors.
The theatrical group of students of Democritus University has prepared a performance in order to raise awareness of stroke prevention, while HOPA/FAST heroes presented their great work in different parts of Greece.
Hellenic Alliance for Stroke presented their activities and the role of SAFE.
Finally, the event was closed with a Latin performance.
Oct 18, 2019
Chris Macey, Head of Advocacy for the Irish Heart Foundation
“The rate of death and permanent severe disability from stroke in Ireland has been reduced by more than 20% in the last decade. But hundreds of people are still dying every year when their lives could be saved. And thousands more are not receiving basic services that would enable them to make the most of life after stroke” says Chris Macey, Head of Advocacy for the Irish Heart Foundation and a SAFE Treasurer.
SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?
CM: Irish stroke services compare well internationally in the vital early period after stroke occurs. But as soon as a person’s life is saved they typically start to regress through poor access to basic therapies in hospital. In therapy terms, patients then effectively walk off a cliff after they pass through the hospital gates – for most physiotherapy, speech and language or psychological services are grossly inadequate or non-existent unless they can afford to pay themselves.
As a result, more people than ever before are surviving stroke only for many to have their recoveries squandered by the failure to deliver the therapy services either in hospital or the community that will help rebuild their lives.
These services require upfront investment, but we do not need to spend more money on stroke. We just have to spend what we have in a different way. For example, our research showed that out of a direct cost of stroke to the Irish State of €557 million a year, up to €414 million was spent on nursing home care and less than €7 million on the community rehabilitation that can keep people in their own homes.
In other words the system starves vital acute and rehabilitation services of funding only then to spend huge amounts of money after the time patients can be helped most.
SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?
CM: We need to recalibrate expenditure on stroke services in Ireland, through upfront investment in acute services and a much greater priority for community rehabilitation services.
The average onset of stroke here is at age 73 and because we will have 50% more 73-year-olds here within the next decade it is vital that we futureproof acute services, first by improving the standard of our stroke units – just one out of 28 fully meets ESO guidelines at present. We need around 200 extra therapists to meet current needs. We also need to invest in thrombectomy services that Irish doctors helped pioneer and to expand Early Supported Discharge (ESD) services that get patients home quicker and improve outcomes.
The development of ESD will also start to address the chronic deficits in terms of therapists working in the community where there are few champions at present for better services. In addition, we have helped to spearhead the development of community rehabilitation teams – working across neurological conditions – to continue therapies after ESD treatment has been completed. Their development in pilot locations and then nationally has to be speeded up however to address the huge unmet need among stroke survivors in the community.
More resources must also be provided to support stroke survivors living at home – the vast majority of stroke support in our country is provided by the Irish Heart Foundation without State assistance outside Dublin and the north west of the country.
SAFE: Please tell us more about your organisation.
CM: The Irish Heart Foundation is Ireland’s national charity fighting heart disease and stroke. Our main activities include:
• Provides information on heart health to the public and media
• Supports patients in managing heart disease and stroke
• Provides heart health programmes in schools and workplaces
• Co-ordinates the training of medics and the public in emergency lifesaving skills (CPR)
• Supports research, education and development in the medical profession
• Advocates for better patient treatment and services and for public health measures that protect and enhance cardiovascular health
We have been particularly effective in developing progressive public health policy in Ireland. We secured improvements to stroke services that have reduced mortality by 20% and permanent severe disability by more than a quarter in the last ten years.
We were a leader of the coalition that ensured Ireland became the first country in the world to ban smoking in the workplace that has saved a life a day in Ireland for 15 years since and that has reduced the youth smoking rate from 41% to 12%.
We also secured Ireland’s sugar sweetened drinks tax, along with restrictions on junk food marketing to children on TV and radio. In addition, we ensured that defibrillators are present on all flights into and out of Ireland and we helped secure major changes to the law to reduce the harm done by alcohol.
