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

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

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?

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

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

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

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

The success of the World Stroke Day 2019 in Catalonia

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

Round Table Discussion for medical professionals: Learnings from the ESUS trials

Round Table Discussion for medical professionals: Learnings from the ESUS trials

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

 

Stroke Survivors’ Needs in the UK: Need to put the spotlight on long-term stroke care and rehabilitation

Stroke Survivors’ Needs in the UK: Need to put the spotlight on long-term stroke care and rehabilitation

“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

World Stroke Day 2019 in Greece: A two-day scientific event on 19th & 20th October 2019

World Stroke Day 2019 in Greece: A two-day scientific event on 19th & 20th October 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.

Stroke Survivors’ needs in Ireland: In therapy terms, patients effectively walk off a cliff after they pass through the hospital gates

Stroke Survivors’ needs in Ireland: In therapy terms, patients effectively walk off a cliff after they pass through the hospital gates

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.

The Bristol-Myers Squibb-Pfizer Alliance and Fitbit Collaborate to Address Gaps in Atrial Fibrillation Detection with the Aim of Accelerating Diagnosis

The Bristol-Myers Squibb-Pfizer Alliance and Fitbit Collaborate to Address Gaps in Atrial Fibrillation Detection with the Aim of Accelerating Diagnosis

Leaders in atrial fibrillation and wearable technology to develop educational content around atrial fibrillation to help identify and support those at increased risk of stroke

Press Release | THURSDAY, OCTOBER 17, 2019
The Bristol-Myers Squibb-Pfizer Alliance and Fitbit today announced at the TIME 100 Health Summit in New York that they are working together to help drive timely diagnosis of atrial fibrillation (AFib) with the aim of improving earlier detection in individuals at increased risk of stroke. The BMS-Pfizer Alliance and Fitbit plan to collaborate on the development of educational content and guidance to support people at increased risk for AFib. Upon submission and U.S. Food and Drug Administration (FDA) clearance of the AFib detection software on Fitbit devices, the parties will aim to provide users with appropriate information to help encourage and inform discussions with their physicians.

“We’re in a new era of healthcare, where we’re not only focused on developing treatments but also looking at the potential of technology and data to help patients learn more about their health,” said Angela Hwang, Group President, Pfizer Biopharmaceuticals Group. “We are excited about wearables and how our work with BMS and Fitbit may potentially help patients and physicians detect and understand heart rhythm irregularities.”

AFib is the most common type of irregular heartbeat and is a significant risk factor for stroke.1,2 Approximately eight million people in the United States are projected to be affected by AFib in 2019.3 As the U.S. population ages, this number is expected to rise, as adults aged 65 and older are at an increased risk of developing the condition.3 Because AFib can be asymptomatic, it can often go undetected, and some studies suggest that more than 25 percent of people who have the condition find out after they have a stroke.(1,4)

“At Fitbit, we’re focused on making health more accessible and, through our efforts with the BMS-Pfizer Alliance, we have the potential to support earlier detection of atrial fibrillation, a potentially asymptomatic condition that affects millions of Americans,” said James Park, Co-founder and CEO of Fitbit. “With our continuous, 24/7 on-wrist health tracking capabilities, and our experience delivering personalized, engaging software and services, we believe we can develop content to help bridge the gaps that exist in atrial fibrillation detection, encouraging people to visit their doctor for a prompt diagnosis and potentially reduce their risk of stroke.”

Wearable technology has continued to become more integrated in the healthcare landscape(5) as people have recognized the value that 24/7 health tracking can have for people of any age or health status, including those at increased risk for specific conditions. Yet, those who use wearables to track their heart rhythm may lack the education or guidance on what to do with the data gathered from their device.6

“Too many people discover that they are suffering from atrial fibrillation only after experiencing a stroke. In fact, some studies suggest that this is true for more than 25 percent of people who have the condition,” said Joseph Eid, M.D., Head of Medical Affairs, Bristol-Myers Squibb. “These efforts with Fitbit exemplify not only our unwavering commitment to addressing the evolving needs of patients with atrial fibrillation, but also our dedication to advancing care by embracing technology as a part of routine clinical practice.”

Please continue reading here.

Image source: Fitbit.com

Now you can support SAFE’s work through donations via Drugstars App

Now you can support SAFE’s work through donations via Drugstars App

SAFE has joined DrugStars, a mobile application that enables you to make donations to your favorite charity just by taking your medicine as prescribed.

Drugstars ApS is a Danish company founded by Claus Møldrup, a former professor at the University of Copenhagen in modern medicine. He founded it together with Claes Rasmussen, former CEO at TWBA, Finn Overgaard, former CEO at RelationshusetGekko, Martin Plambek, former GM strategic marketing at Maersk Group, Jesper Kilbæk, former director of a bank, and Paul Clements, creative partner at Mensch.

Basically, DrugStars is an app that reminds you to take your medicine and awards you with stars that you can donate to health charities. But there is so much more in it: DrugStars hopes to become the largest patient movement in the world. A movement of patients who give to others just by taking their medicine as prescribed. And most importantly, a movement of patients who share their experiences and perspectives with regard to their medicines, so that this knowledge can be used to improve treatments. The ambition is to make you proud of taking your medicine the right way – to make you a real DrugStar.

It’s very simple to use DrugStars, and if you have any problems, don’t hesitate to ask by using contacts provided on their website.

How to start

First, you download the app and login with your Facebook account or create your very own DrugStars account.
Then, you register your medicine, vitamins etc.
You will receive reminders based on the information that you registered with your medication, and every time you receive a reminder, you will also be able to collect a ‘star’. You can also earn stars by reviewing your medicine or by referring other people to join DrugStars.
When you have earned 50 stars, you can donate them to one of the health charities in the app. DrugStars turns the ‘stars’ into real money and donates them to the health charities approx. every 6 months.

See some of the great memories in Donations.

If you wish, you can see a more detailed guide to the DrugStars app right here: Download The DrugStars Guide right here