Organization of stroke care in Japan

Takafumi Kubota^1,2, Arsalan Anwar^3, and Sidra Saleem³

1.     Department of Neurology, Teine Keijinkai Hospital, Sapporo, Japan
2.     Department of Neurology, University Hospitals of Cleveland Medical Center/Case Western Reserve University, OH, U.S.A.
3.     Department of Internal Medicine, Dr. Ruth Pfau Hospital, Karachi, Pakistan.

Abstract

In Japan, stroke is one of the major health problems. In particular, stroke has become a major factor in disability-adjusted life-years as the population ages, and is a significant burden on medical expenses. Therefore, Japan makes many efforts to lower age-adjusted mortality from stroke and extend a healthy life expectancy.

Stroke is the second most common cause of mortality and disability-adjusted life-years (DALYs), worldwide [1]. In Japan, the mortality rate of stroke has declined from 180 per 10000 in 1970 to 87 per 10000 in 2018, however, it still remains the fourth most common cause of death after cancer, cardiovascular disease, and senility [2]. The DALYs impact produced by this disease is 30% of the Japanese population. Therefore, the economic health care burden produced by stroke is 1.56 trillion dollars in health costs and 1.74 trillion dollars in nursing care costs [3]. The subtypes of ischemic stroke have also been changing. In the last four decades, as a result of changes in the salty traditional diet to the western fatty diet as well as the prevention of hypertension, the incidence of lacunar infarction in ischemic stroke steadily declined by 59% for men and by 28% for women [4]. On the other hand, the percentage of cardio-embolic and atherothrombotic stroke in ischemic stroke increased from 44.9% in 1984-1998 to 60.7% in 1998-2000 [5]. 

  The decline in stroke incidence is due to the contribution of Japan Stroke Society (JSS), which was established in 1975. It has provided a wide range of initiatives such as acute care, prevention, education, and rehabilitation. Currently, the JSS works with the Japanese Circulation Society (JCS) on two main goals to improve individual lives and reduce the economic burden. The first goal is to lower age-adjusted mortality from stroke and cardiovascular disease by 5% in 5 years and by 10% in 10 years.  The second goal is extending a healthy life expectancy. To achieve these two goals, the JSS has five strategies as follows; (1) Human resource development, (2) Enhancement of the medical system, (3) Promotion of registration business, (4) Prevention, and (5) Strengthening of clinical and basic research [6].   

  In Japan, there are 1,369 certified training institutions of the Japan Neurosurgical Society, the Japanese Society of Neurology, and/or the JSS. The institutions are divided into two types of the center. First, the primary stroke center (PSS) can perform standard evaluations such as MRI or CT and treatment including recombinant tissue plasminogen activator (rtPA) at any time in twenty-hour seven.  The necessary requirements for PSS were published in 2017, and the application of the primary stroke center was started in July 2019. Second, the comprehensive stroke center (CSC) is capable of advanced neurosurgery, endovascular surgery, stroke care unit and/or intensive care unit in addition to PSS requirements. The distribution, number, and mutual relationship of each other will be organized within a few years [3,7-9].

  For functional recovery after acute stroke care, rehabilitation medicine for stroke in Japan has improved since the beginning of the convalescent rehabilitation ward in 2000.  The patients can be hospitalized for rehabilitation up to 180 days with national health insurance, 3 hours per day including weekends of rehabilitation.  The convalescent rehabilitation hospitals have increased up to 1,348 hospitals and 76,631 beds (60 beds per 100,000) in 2015 which can cover the demand of 25 beds per 100,000 [10].  After being discharged from the convalescent rehabilitation hospitals, the patients are treated by the regional comprehensive care system such as outpatient clinics, visiting nursing stations, and home rehabilitation [7].

  The JSS also actively works to prevent stroke through lifestyle modifications and educating people about prevention. The prevention is primarily divided into four stages based on the severity as follows; (1) Improvement of lifestyle through public education, (2) Intervention for lifestyle-related diseases through primary care, (3) Early detection and intervention of stroke, and (4) Decrease in the mortality associated with stroke.  The JSS sets each goal in four stages and monitors the results [7].

  In conclusion, Japan is aware of the impact of stroke on individual life and economic burden. In the last 40 years, Japan makes many efforts to lower age-adjusted mortality from stroke and improve the outcomes.

Reference

[1]  Johnson CO, Nguyen M, Roth GA, Nichols E, Alam T, Abate D, Abd-Allah F, Abdelalim A, Abraha HN, Abu-Rmeileh NM, Adebayo OM. Global, regional, and national burden of stroke, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016. The Lancet Neurology. 2019 May 1;18(5):439-58.

[2]  Statistics and Information Department, Ministry of Health, Labor and Welfare (MHLW), Japan. Overview of Demographic Statistics Monthly Report  2018. https://www.mhlw.go.jp/toukei/saikin/hw/jinkou/geppo/nengai18/dl/gaikyou30.pdf.  (accessed Dec 23, 2019).

[3]      Toyoda K, Sonoda K, Sato S, Yoshimura Sl. The Japan Stroke Databank Current stroke care in Japan and ideal stroke registries. Shinkeichiryo 2018;35(3)192. https://www.jstage.jst.go.jp/article/jsnt/35/3/35_188/_pdf/-char/ja. (accessed Dec 23, 2019).

[4]     Kubo M, Kiyohara Y, Ninomiya T, Tanizaki Y, Yonemoto K, Doi Y, Hata J, Oishi Y, Shikata K, Iida M. Decreasing incidence of lacunar vs other types of cerebral infarction in a Japanese population. Neurology 2006;66:1539–1544

[5]      Yukito Shinohara. Regional Differences in Incidence and Management of Stroke – Is There Any Difference between Western and Japanese Guidelines on Antiplatelet Therapy?. Crebrovasc Dis 2006;21(suppl 1):17–24 DOI: 10.1159/000090358

[6]      Kokubo K.  Changes in stroke Japan and other countries.  Japanese Journal of Cardiovascular Disease Prevention 2017; 52(3) 223-232.  http://www.jacd.info/library/jjcdp/review/52-3_01_%20kokubo.pdf. (accessed Dec 23, 2019).

[7]      The Japan Stroke Society.  5-year plan to overcome stroke and cardiovascular diseases. http://www.jsts.gr.jp/img/five_year_plan.pdf.  (accessed Nov 23 2019).

[8] Iihara K, Nishimura K, Kada A, Nakagawara J, Ogasawara K, Ono J, Shiokawa Y, Aruga T, Miyachi S, Nagata I, Toyoda K. Effects of comprehensive stroke care capabilities on in-hospital mortality of patients with ischemic and hemorrhagic stroke: J-ASPECT study. PloS one. 2014 May 14;9(5):e96819.

[9] Toyoda K, Inoue M, Koga M. Small but steady steps in stroke medicine in Japan. Journal of the American Heart Association. 2019 Aug 20;8(16):e013306.

[10]      Miyai I.  Update on stroke rehabilitation.  Shinkeichiryo 2016;33(3)389-393. https://www.jstage.jst.go.jp/article/jsnt/33/3/33_389/_pdf. (accessed Dec 23, 2019).

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Hundreds gathered to raise awareness and support life after stroke in Singapore and Malaysia

WSO Stroke Support Organisations in Singapore and Malaysia led inspiring events to raise awareness and celebrate life after stroke. The events also raised the flag for the World Stroke Campaign virtual relay Asia route #DontBeTheOne

Stepping out for Stroke in Singapore

Singapore National Stroke Association (SNSA) held its fourth Stepping out for Stroke event on Saturday 12^th October. The event had over 800 registered participants including nearly 100 stroke survivors and carers.

Stepping out for Stroke is SNSA’s annual fundraising event, where it encourages participation from people affected by stroke, medical professionals, students and the wider community in whatever way they choose; walking, running, cycling, and in wheelchairs and pushchairs. The Mayor of Central Singapore CDC, Denise Phua was the guest of honour and talked passionately about the need to prevent avoidable strokes and to support life after stroke.

Aanandha Sharurajah, who had a stroke in 2012 and is a member of the SNSA Executive Committee said, 'Stepping out for Stroke was a really important day for me, as it was a day my whole family was involved in. We all wore our purple t-shirts, showing that we were standing for stroke survivors and greater awareness of this illness, and it was the largest number of people I've witnessed so far standing for stroke'. 

The event was an opportunity to mobilise the community to raise funds, increase awareness of stroke and engage in physical activity. The day also included the launch of the FAST Heroes 995 Programme in Singapore, which is a collaboration between SNSA, Boehinger Ingelheim’s Angels Initiative and the World Stroke Organization https://worldstrokeorganization.blogspot.com/2019/07/be-stroke-superhero-be-fast.html. The programme is a kindergarten-level education initiative aimed at equipping children with knowledge about what stroke looks like and what to do in an emergency.

The event also joined the World Stroke Campaign virtual relay Asia Route, getting behind the #DontBeTheOne 2019 Campaign theme.

Ng Wai May, President of SNSA said 'Our signature Stepping out for Stroke community event was held on 12^th October 2019.  The event was very successful with over 800 participants and we have raised over $60,000 so that we can offer free programmes for stroke survivors and caregivers'.

For more information about SNSA visit:

www.snsa.org.sg  | https://www.facebook.com/SNSA.SG

Stroke Games 2019 – paving the way for more champions

Stroke Games 2019 kicked off on Saturday 19^th October with a vibrant opening ceremony, with flags from Malaysia, the National Stroke Association of Malaysia (NASAM), World Stroke Organization #DontBeTheOne and the nine NASAM contingents from across Malaysia. The event was declared open by YABhg Tun Jeanne Abdullah, Patron of the Malaysian Paralympic Council. Before its arrival into the stadium, the Stroke Games torch was passed on by a relay of stroke champions who ran, walked or wheelchaired it along the way.

'How do you inspire someone who is down and out after a debilitating stroke?' asked Janet Yeo, Founder Chairperson of NASAM, in her opening speech.  'How do you inspire that person to climb mountains, to aim high and excel? To aspire to be a champion and to believe there is life after stroke?'

'When you are inside a stroke damaged body, believe me the last thing on your mind is sports or competitiveness,' said Yeo, a stroke survivor herself.  'We at NASAM want to reach out and mend such broken spirits and one of the ways is through sports. For a whole year we carefully crafted and designed sporting events and then transferred them into our daily rehab regime before our first Games in 2017.  Suddenly rehab was no longer a boring word. It was not a passive, repetitive routine'. 

Yeo added that the Stroke Games 2019 is bigger and will generate more champions who will inspire others to achieve greater recovery.  'The Games is NASAM’s contribution to the stroke community around the world. We wish that this fighting spirit of a stroke champion is ignited into every person affected by a stroke no matter where they are’. 

The Games involved more than 800 participants from NASAM’s nine clubs across Malaysia as well as volunteers from corporations, universities and hospitals. There were 25 events including: 50m and 300m walk/run; hand cycle; modified weight lifting and seated volleyball. The youngest athlete was Lee Yong Xian aged 16, who represented Kuantan in the 300m for men.  The oldest was Mariya Pillay aged 81, representing Malacca in hand cycle for women. 

NASAM Petaling Jaya and Malacca emerged as champions with a tie, with Perak finishing runner-up.

For more information about NASAM visit:

www.nasam.org | facebook.com/NationalStrokeAssociationMalaysia

An inspiring personal testimony about aphasia post stroke

François Grosjean, Professor Emeritus at the University of Neuchâtel, Switzerland, shares a recent interview he undertook with a multilingual aphasic stroke survivor

My interest in aphasia - language and speech impairment due to brain damage most often resulting from a stroke - started many years ago when I was writing my first book on bilingualism, Life with two languages: An introduction to bilingualism. I had a whole section on multilingual aphasic patients and related the many fascinating recovery patterns that have been reported in the literature.

I then collaborated with the Lausanne University Hospital (CHUV) in Switzerland for which my laboratory did a number of projects for their aphasia unit (see here for a list of publications). The most notable project concerned a battery of on-line perception and comprehension tests for aphasic patients.

When I started a blog for Psychology Today a number of years ago, it was only normal that I talk about aphasia in bi- and multilingual patients. A few weeks ago, a colleague in Singapore, Dr. Valerie Lim, told me that she had a multilingual aphasic patient who was willing to be interviewed for my blog. I was thrilled as a personal testimony can be of interest to others recovering from aphasia, their family members and friends, and the general public. It can also be motivating for the person herself who is struggling to recuperate her language(s).

The interview, for which I have already received wonderful feedback ("an amazing and inspiring story", "this interview is fascinating", etc.) can be found here.

Kavita Basi shares her inspiring story of stroke recovery

In March 2015 at the age of  38, Kavita Basi suffered a subarachnoid brain haemorrhage, a life-threatening type of stroke caused by bleeding on the surface of the brain. Here Kavita shares her story to continue to raise awareness of stroke. 

I was taken into the accident and emergency wing of the hospital on 17 March, 2015, with a life-threatening subarachnoid haemorrhage. I was only thirty-eight years old and had always been a healthy person. I was successful, career-oriented, and travelled the world while working too many hours with no time to relax and think. Then, one night, I suddenly became extremely ill, and my whole world fell apart. I was in the hospital for nearly two months, and after four intense brain surgeries, I had difficulty understanding what was happening to me and why.

What expectations did you have for your treatment, rehabilitation and recovery?

I didn’t understand what had happened to me therefore I was not in the right frame of mind to be able to have any expectations , also considering that this had never happened to me before it was all a new experience. However I was given very basic detail on how my recovery would progress and didn’t find this helpful.

What was your experience of treatment and/or rehabilitation?

My journey to recovery has been challenging, my perspective has drastically changed, as I now see the important things in life I had to relearn how to do the simplest tasks, like climbing stairs, re-tuning noises due to losing some sense of hearing, severe constant headaches as a result of watching any TV, leaning how to use my mobile devices without having motion sickness. My personality changed, and I was left with short term memory loss, intense mood swings, an emotional state of mind, being very direct when talking, having the black and white thinking and losing that middle ground of understanding. This new life also had a major effect on my relationships, family, and view of work.

What has helped you in your recovery?

• Starting my own blog and youtube channel
• Writing a diary to get my emotions out and help with memory loss
• Tools on mobile device like notes and sharing calendars have helped with memory loss
• Therapy at the priory – with confidence and understanding
• Neuropsychology – which I still attend helped with other tools to adapt to give me a more normal life
• Neuropsychology for my family – this has helped my relationships as they now understand
• Talking to others – by joining health unlocked forum
• Walking – daily to help my high anxiety and keep my focus and fitness
• Diet – eating healthier to keep my fitness
• Not going to loud places – it hurts my head and ears when I’m tired.

What have been/are your fears?

That it will happen again

How did your family and friends feel and respond?

Its been very difficult for my family to understand this just as much as me and maybe even more difficult for them as they have not experienced the daily challenges. By making some of them go to talks from charities or neuropsychology with me has really helped them to understand better. 

My social circle has changed as a result of lack of understanding.

How and why have you got involved in stroke awareness and advocacy?

I have got involved since I came out of hospital because I felt so alone in my early days of recovery and didn’t want anyone else to feel the same which is why I started to get so involved in helping others. So I started my blog, website www.kavitabasi.com and then I wrote my book Room 23 Surviving a Brain Haemorrhage.

Promoting life after stroke at the Stroke Games in Malaysia

World Stroke Organization SSO member the National Stroke Association of Malaysia (NASAM) was founded in 1995 by Janet Yeo after her remarkable recovery from a crippling stroke. NASAM’s mission is to promote stroke prevention awareness and to inform the public that there can be life after stroke with rehabilitation and long term support.

Stroke is the second leading cause of death in Malaysia, where six strokes occur every hour and over 50,000 new cases are reported each year. At its nine stroke centres, NASAM therapists conduct rehabilitation sessions which include physiotherapy, occupational and speech therapy to help stroke survivors regain their confidence and independence. NASAM also organises a range of activities to support daily living, these include cooking, art and craft, singing, music and movement and games.

NASAM recognises that as well as the physical effects of stroke, there are also emotional effects such as depression, anxiety, anger and denial. NASAM therefore also offers counselling services to enable people affected by stroke to find relief and to reinforce the importance of their view and significance of them as a person. At times, counselling is also provided to family members who have trouble coping or adapting to the responsibilities that have changed their lifestyles in caring for a stroke survivor.

NASAM’s objective to increase general awareness about stroke is the impetus behind their talks and forums. Open to the public, NASAM invites medical doctors, and other stroke-related specialists to talk about stroke prevention and stroke rehabilitation.

On an annual basis NASAM organizes nation-wide campaigns to raise public awareness of the risks of stroke and to encourage the public to take positive steps to adopt a healthier lifestyle to reduce their risk of stroke. The programme includes events to encourage the public to be more physically active.  There are also forums, chat shows on TV and radio, and open days at NASAM centres.

From 19-20 October 2019 NASAM will organize its second STROKE GAMES at the Panasonic National Sports Complex, Shah Alam, Selangor. The goal of the STROKE GAMES is to help stroke survivors in their recovery and to develop the “never give up” attitude. NASAM’s tagline is “CELEBRATING LIFE AFTER STROKE”. 

The Games showcase the abilities of stroke survivors and the possibilities of life after a stroke. The event helps people to regain confidence and dignity and instils a new outlook to living life.Sports include individual and group challenges such as basketball shoots, darts, obstacle races, baton relays, seated volleyball, lawn bowling, distance throws, modified weightlifting, modified archery, hand cycle, triathlon, 50m walk, 50m walk with hurdles, 300m walk, table and cognitive games.

The Games are also an opportunity to generate awareness of stroke in Malaysia where stroke awareness is still low and many people experiencing a stroke do not seek medical help fast enough.

For more details on the STROKE GAMES, please visit:

https://www.youtube.com/watch?v=cSgbtvvScM0

https://youtu.be/TKBdkmSq7zc

https://m.facebook.com/story.php?story_fbid=10156246771918845&id=96974848844

www.facebook.com/NationalStrokeAssociationMalaysia

www.nasam.org/event-details/?id=20

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The burden of stroke is unjust and action is needed

The Tanzania Heart Club became a stroke support organization member of the World Stroke Organization in 2019. Here, Hussein Liobike, a community health worker, tells us why he was motivated to start the organization to fight against the burden of stroke and heart attacks and get involved in stroke support.

·         What has inspired you to be involved in stroke support?

The inspiration is that I want to support stroke survivors as they face many challenges, including social and economic challenges and I want to help to unite them so that they can have a stronger voice in our country and globally. Stroke is a leading cause of death and disability. For stroke survivors and their families it can result in economic hardship. My inspiration is to contribute to reducing strokes in our society and to ensure those that have had a stroke access support. National strategies don't always prioritise their needs, so we need to make sure that they have the appropriate support that they need and to create centres and opportunities for stroke survivors to access services.

·         What does stroke support look like in your country?

Stroke support in Tanzania is a still problem because many people don't understand what life after stroke is like and what the needs of stroke survivors are. So we are raising awareness about life after stroke and in the meantime we must support survivors' needs. We are working with stroke survivors to fully understand their experience so that we can provide appropriate support. We are working with families and stroke survivors to support them in daily activities and to keep active. 

·         How did the project come about?

The project came about after recognising the challenges stroke survivors face and the fact that there is a national stroke burden in Tanzania that is leading to a large number of disabilities and deaths. The burden of stroke and loss of life and disabilities is unjust and I knew that we must take action. 

·        What has been the feedback from stroke survivors to the project?

The stroke survivors that we support are really positive about the help that we can give, they remain engaged with us and report that they are making progress in their recovery and that we give them hope. The challenge is that we need more tools to support us in our life after stroke activities. We also have to take time to help stroke survivors understand what recovery after stroke can be like, some think that they can be cured by taking some pills. 

·        What has been the response from others – community, doctors, politicians?

·       In the community the mindset about stroke is changing, people are recognising that they need to seek early treatment from hospitals rather than from traditional healers, and that rehabilitation is essential for recovery.  Doctors are increasingly understanding how important rehabilitation is to the survivors and  some of them are providing rehabilitation services. However these services are not accessible to everyone as they cost money, so we try to advocate for survivors to access free rehabilitation. Politicians are beginning to understand the need for rehabilitation and I am talking with parliamentarians about rehabilitation services in Tanzania, but this will take time as they have many competing priorities.

·        What would you say to other people to make them take stroke prevention seriously?

We are sharing with people that stroke can attack anyone, at any time and any age, and can therefore affect peoples' economic viability. We stress the importance of taking stroke prevention seriously by knowing the risk factors for stroke. We are promoting the importance of paying attention to your health and to engage in physical activities, reduce salt and to be aware of and manage high blood pressure. We know that behaviour change can be difficult, so we are persevering!

Supporting stroke survivors not just to survive but to thrive

Craig Pankhurst, a stroke survivor from the UK, has established an exciting new stroke support organisation that combines his pre and post stroke life to support the recovery of stroke survivors using physical exercise.

Married with two daughters, two dogs and a cat, Craig is a keen sports fan and spent his younger years swimming and playing football, becoming an international swimmer in the 1990s.

Craig had a stroke on 28^th April 2018, at the age of 39.

‘It was in the act of blinking my eyes at 6am that I first realised I was not in a good way. The overwhelming feeling of the room spinning uncontrollably, yet in darkness as my vision had gone, resulted in a feeling of dread and fear. Little did I realise that at the age of 39 I was in mid-ischemic stroke and that life was about to change forever’.

Craig was admitted to Arrowe Park hospital for CT and MRI scans, with friends and family by his side. He had significant damage to his brain, with further scans showing a dissection of the vertebral artery.  

Craig’s biggest issue is post-stroke fatigue. ‘It is a dreadful experience that a sufferer has to live with every day. It is not like being tired’, says Craig. He manages his fatigue via a traffic light system. When he’s in his ’green zone’ Craig’s able to function pretty much as he could pre-stroke, albeit with a slight left-side weakness and concentration deficit. When in his ‘amber zone’, his speech and thought processes slow down and his left side weakness is more pronounced. In ‘red zone’, Craig becomes very limited in his movement and struggles to communicate effectively.

Craig has always been a very motivated individual who thrives on setting goals. He believes these traits will continue to support him in his recovery.  ‘Under the care of the Walton Centre in Liverpool, I continue to manage my rehabilitation to ensure I am best placed to live a positive and full life. This is why I wanted to start a charity to inspire fellow stroke survivors to embrace their new life in a similar, positive way. Meeting other stroke survivors, I realised that self-image and self-esteem are significantly affected and after the initial rehabilitation phase patients are signed off to continue their recovery on their own, exacerbating this loss of confidence. What has really helped me has been to find a personal trainer and a gym that can support my physical recovery, improving my self-confidence. A Stroke of Luck will do the same for survivors who may not have the same expertise or resources to do this for themselves, and need a bit of support’.

A Stroke of Luck launched on 1^st May 2019, only a few days after the first anniversary of Craig’s stroke, and the beginning of Stroke Awareness Month. There are over 1.2 million stroke survivors in the UK and 100,000 new strokes each year. Over two thirds of these survivors leave hospital with a disability. ‘We need to provide the opportunity for survivors to get active and promote physical rehabilitation for the benefit of all’, says Craig.

A Stroke of Luck will match stroke survivors with fitness professionals to help them to get active. A web platform is being developed where stroke survivors will register to become a member of the ‘A Stroke of Luck Survivor’s Club’, with access to health and wellbeing advice as well as fitness videos.

Personal trainers will also register to become a member of the ‘A Stroke of Luck Expert’s Club’.  Funding received by A Stroke of Luck will be converted to credits that can be used by the stroke survivor to book a session with a qualified A Stroke of Luck approved personal trainer.

Friday 6^th September 2019 will be the official launch of the A Stroke of Luck membership portal. ‘We don’t just want stroke survivors to survive, we want them to THRIVE. We would like to enhance the lives of every stroke survivor, regardless of their post-stroke effects, by giving them access to long-term physical and emotional care following the discharge from medical professionals’, says Craig.

For more information and to support A Stroke of Luck:

Please visit the A Stroke of Luck website www.astrokeofluck.co.uk

This blog includes extracts from the Wirral Life article Stroke Survivor Launches New Charity https://www.wirrallife.com/digital-issue

Excerpts from the stroke support organization main session at the 2018 World Stroke Congress are now live on the World Stroke Academy

There was significant stroke support organization (SSO) representation and content at the 2018 World Stroke Congress in Montreal, and for the first time the SSO main session was recorded and excerpts are now available on the World Stroke Academy. 

There was a range of SSO activity throughout the World Stroke Congress. The Testimonial Exhibition and e book included 145 stories of people affected by stroke from 28 countries. During the Congress the posters were placed by the list of Congress participants, and many delegates commented that it was a reminder that people affected by stroke across the world are a fundamental part of the World Stroke Congress – ‘the reason we are here’.

The SSO main congress session opened with ‘The power of SSOs as change agents to improve stroke systems of care’, chaired by Heart and Stroke Canada. The first presentation is on the Canadian experience of the building blocks for stroke systems change. The presentation on Heart and Stroke’s indigenous health strategy highlights that bringing together different knowledge systems can generate innovation. The talk on driving systems change in a complex political environment, stresses the importance of keeping a focus on patient and caregivers’ needs and ensuring transparency.

The last talk in this session is by Sheila Farrell, a Canadian stroke survivor. Sheila emphasizes the gaps in long term stroke support for survivors, and the importance of listening to survivors’ experiences to understand the reality of life after stroke, and to help build a better roadmap for future stroke survivors. She calls for the loop to be closed between scientific research, the disciplines of the healthcare system, the community and the patient.  

The next SSO session focuses on some of the less talked about effects of stroke. We hear about stroke specific end of life issues, including communication difficulties and the lack of discussion on end of life planning, as stroke is often a ‘bolt from the blue’. The relationships and intimacy talk highlights the fear and concern often felt by stroke survivors in relation to these issues, and the need for training to build the confidence of health care professionals in discussing relationships and sexuality.  The third talk in this session looks at psychological changes as a result of stroke, and underlines the importance of sharing stroke survivor testimonials to highlight the psychological impact of stroke, to challenge stigma and to encourage stroke survivors to identify with others; building peer support. The conclusion of this session is that there is a crucial role for SSOs across all these issues: to advocate for better support, training and research; to identify and meet needs and gaps through their stroke support activities; and to develop resources.

Thank you to all the SSO speakers and to the congress delegates who engaged so positively with the important work that SSOs are doing across the world. 

If you are a member of WSO you can access the SSO content here https://world-stroke-academy.org/wso/2018/montreal/261548

Hope and support on Stroke Survivors' Day in Ghana

16th March is National Stroke Survivors' Day in Ghana and this year, stroke support organisation Stroke Association Support Network Ghana (SASNET Ghana), ensured that the day was full of hope and support for people affected by stroke. 

SASNET Ghana is a stroke support organisation member of the World Stroke Organization and a member of the Ghana NCD Alliance. SASNET Ghana wants a nation that recognises stroke and other non-communicable diseases (NCDs) as a public health priority. Its aim is that all Ghanaians are educated about the risk factors and signs of stroke, and all those affected by stroke have access to the best possible treatment and rehabilitation. SASNET Ghana campaigns for better stroke services and provides prevention awareness and rehabilitation recovery support services for stroke survivors.

2019 marked the second National Stroke Survivors' Day and SASNET Ghana used the day to promote the message that there is life after stroke and that with the right information, treatment, care and support, people affected by stroke can have improved outcomes. The day was also an opportunity for SASNET Ghana to mobilise the general population to support people affected by stroke and to challenge stigma and discrimination.

As part of their activities for the day SASNET Ghana held a Community NCD Awareness Forum in partnership with the Ghana NCD Alliance. In his welcome  address, Mr. Ad Adams Ebenezer, Vice Chairman of the Ghana NCD Alliance and Director of Operations for SASNET Ghana, focused on NCD risk factors and the increasing incidence of hypertension and stroke across the country. Ad Adams emphasized the need for a multi-stakeholder approach to combat NCDs, including the Government, health sector, civil society organisations and citizens working together.

During the Forum people living with NCDs shared their experiences. Mr. Samuel Sedodo talked about the effects he has experienced due to his stroke. He highlighted that caring for people affected by stroke is challenging and that there needs to be increased support from the Government for long term care. He also called on young people to take their health seriously.

Creating a new normal after stroke: the inspiring story of Hilary Wehby

In 2017, Hilary Wehby, a stroke survivor from Jamaica, approached the World Stroke Organization about her desire to establish a stroke foundation to support and educate stroke survivors in her country. Two years on, the Stroke Foundation of Jamaica has become a new member of WSO and Hilary is about to launch her book, My New Normal: Reflections of a Stroke Survivor.

Before her stroke in 2015, Hilary lived a very full and active life; a mother of three children and married for nearly 30 years to a very busy husband. She was involved in a Christian Women's Ministry, and working full time as a senior new product development manager at a fast-paced food company. Life changed dramatically for Hilary when she had her stroke; she was no longer able to work at the place she had been employed for 31 years. Her life began to revolve around her therapy schedule and her family. She was not able to drive and had to depend on others to get around.

Hilary began her journey to a new normal with the belief that her connections in Jamaica with doctors, nursing and counselling networks, Christian ministry and the business community locally, would be useful in her mission to support and educate stroke survivors. ‘I am excited at the prospect of contributing to making education and assistance more widely accessible’ says Hilary.

Hilary has through the years, balanced being a devoted wife and mother, with outstanding scholastic achievement, professional service and social outreach. Describing her “pre-stroke” self, as being “a busybody-always-on-the-go- miss diligent-thorough-always-on-top-of-things person”, she now embrace her “new normal” as enabling and  empowering her. 

Hilary employed her always on the go attitude and connections across various networks, to build the new stroke support organization in Jamaica. The Stroke Foundation of Jamaica’s goals are to reduce the burden of stroke to patients, caregivers and the country through prevention, treatment and long-term care, and support stroke survivors to achieve the highest possible quality of independent life. The foundation is at the beginning of its work and is currently exploring collaborations with a range of stakeholders in Jamaica.

Hilary’s book, My New Normal: Reflections of a Stroke Survivor, will be launched at an event in Kingston, Jamaica on March 7, 2019.

Thank You For Supporting World Stroke Day 2018

This year World Stroke Day on the October 29th, was firmly focused on life after stroke. On social media, in the press and and at 194 events spanning 61 countries, stroke survivors caregivers and professionals got together to raise visibility of stroke, share their experiences of getting #UpAgainAfterStroke and build on the ground political commitment to action on stroke prevention, treatment and support.

Our World Stroke Day campaign aimed to show that a meaningful life after stroke is possible and that with the right care and support people can and do get up again. 

We think our members, supporters and partners left no-one in any doubt that the 80 million stroke survivors around the world have the potential to move mountains.

World Stroke Day by Numbers

• 170 million online campaign reach
• 84 million potential media views
• 194 registered events
• 61 countries
• 112,000 campaign web visits
• 11,500 toolkit downloads
• 157K reach on Facebook

The campaign isn't over, you can continue to share our resources and take action through the year. We'll also be running a series of webinars highlighting key issues in life after stroke - watch this space!

Health information for stroke survivors, families and carers available in different languages

New: health information available in different languages

The Stroke Association in the UK are proud to announce that it has published translations of its main health guides.

You can now access the Stroke Association's main general guides in South Asian languages, Welsh, and a wide range of European languages. The Stroke Association has translated its most popular general guides to stroke and stroke prevention. These include When you have a stroke, Next steps after a stroke, Supporting a stroke survivor and How to reduce your risk of a stroke.

The European language translations were coordinated by Stroke Alliance for Europe (SAFE). Printed copies of these guides are being distributed in selected hospitals in each country, and you can download PDFs from the Stroke Association website.

How can I access the translations?

You can order print copies, stream audio online, and download PDFs from the Stroke Association website. For a full list of languages and publications, visit its translations web page.