Stroke Survivors’ needs in the UK: The marginalisation of stroke survivors is an ongoing problem

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/

Stroke affects one in four people, so #DontBeTheOne – But what if you already are #TheOne?

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.

On World Stroke Day 2019 SAFE announces the next big step: European Life After Stroke Forum 2020

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.

The success of the World Stroke Day 2019 in Catalonia

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