Dedication and commitment to supporting life after stroke in Japan

In March 2019 I was invited to speak about patient involvement at the Non-Communicable Disease (NCD) Global Forum for Civil Society in Tokyo, organised by the Health and Global Policy Institute. I also took the opportunity to visit some inspiring stroke support organisations.

Sarah Belson, International Development Manager, World Stroke Organization and Stroke Association UK

NCD Global Forum for Civil Society

 

Takenori Yamaguchi, Executive Director
Japan Stroke Association

Following the recent passing of Japan's new Basic Act on Cardiovascular Diseases, the March session of the NCD Global Forum focused on heart disease, stroke and other cardiovascular diseases. The Basic Act aims to ensure a comprehensive and systematic response to cardiovascular diseases across the country. With the Government, healthcare professionals and patient organisations beginning to work on implementation plans for each health condition, the NCD Global Forum was an opportunity to share experiences and insights from patients, legislators, healthcare professionals and international organisations.

I spoke about strengthening patient advocacy and stressed the importance of ensuring meaningful involvement is at the heart of an organisation’s mission and strategic priorities; highlighting the World Stroke Organization’s priority to strengthen global capacity to reduce the burden of stroke, and the UK Stroke Association’s strategic goal to partner with people and communities to help them take action on stroke.

There are lots of great examples from across the World Stroke Organization and its members of meaningful involvement: the Global Stroke Bill of Rights built consensus across experience and contexts to develop advocacy messages; the activities of the Stroke Association of Kenya are guided by the lived experience of stroke survivors; and Stroke Action Nigeria supports stroke survivors to develop local stroke services as a business.

Inspiring stroke support in Tokyo and Osaka

I spent some time with Naomi Sonoda, a dedicated stroke advocate and Director of the Language Support Centre in Tokyo. Naomi was motivated to start this Centre and also the Japan Aphasia Circle, a peer support group, following her husband's stroke nearly 20 years ago. The Language Centre runs daily speech therapy sessions and has four speech and language therapists and 66 members.

In Osaka, I had the most wonderful welcome at the Sumomo Club for people with aphasia. The club is really vibrant, with skilled and committed staff. Established in 2005, the Sumomo Club has 65 members ranging in age from 30 to 90, and runs group activities as well as outreach to families and schools. Its mission is to provide a therapeutic environment for people with aphasia and other communication disorders to be able to participate, communicate and engage in creative activities. Its approach is to reinforce what you can do, not what you can’t. This wonderful video captures the spirit of the club.

The Japan Stroke Association sees its role as promoting and supporting long term care for people affected by stroke. Although this stroke support organisation only has one full time staff member and relies on volunteers, it delivers activities across the 47 prefectures of Japan, which include a helpline and peer support groups.  The Japan Stroke Association has been involved in the Basic Act, in particular consulting with patient groups, and will certainly be actively involved in the development of the implementation plan.

Thank you to everyone I met for such a warm welcome to Japan; at the policy and service level there is a lot to be positive about for people affected by stroke, and it's clear that there is a strong commitment to continue to ensure that people affected by stroke access the long term support that they need.

Staff of the Sumomo Club, Osaka

The ammunition to fight stroke and NCDs together

A Call to Action and Ammunition Needed to Beat Stroke and NCDs

By Prof Bo Norrving, WSO Global Policy Committee Chair

Next week I will be in Montréal, alongside 2500 stroke leaders and stakeholders spanning clinical practice, research, rehabilitation and patient and caregiver organizations. The expertise and individual interests represented at the biennial World StrokeCongress may be diverse, but our common commitment is the same – to fight stroke and reduce its devastating impact on individuals and society.

As the world’s second largest cause of death and disability it is a battle well worth fighting, but one that we don’t have to – not should we - take on alone. Globallly, regionally and nationally there are networks and alliances working to break down the traditional siloes between disease groups in order to increase the speed at which the world addresses the diseases that are most likely to kill us.  We know, that by connecting the dots and coordinating our efforts with others who have a shared investment in beating NCDs, we can achieve more, maximise our investments and move faster than we can individually. When investments have been slow to come, and governmental commitments to change continue to disappoint, this could be the key to making progress.

The sense that together we are stronger, is certainly the driving force for collaboration between the NCD Alliance and the World Stroke Organization (WSO) and the rationale behind our latest partnership collaboration Acting on Stroke and NCDs. The aim of this policy brief, which will be launched at the World Stroke Congress in Montréal, is to clearly articulate the shared prevention and treatment issues for NCD stakeholders and to set out key priorities for action at global, regional and national level. It is our hope that Acting on Stroke and NCDs provides not just a call to action, but the ammunition needed to beat NCDs.

The publication clearly sets out the contribution to stroke to global NCD mortality and identifies the shared and specific gaps in current approaches to addressing stroke and NCDs. When only 6% of all people who have a stroke have no comorbidities and when comorbidities result in not only higher healthcare, individual and social costs, this policy brief sets out a strong evidence-based argument and some clear action points that will turn the tide on stroke and NCDs .

How to respond to the challenge of stroke and NCDs

Invest in prevention

Given that 90% of strokes are linked to 10 modifiable risk factors, several of which are shared by a number of NCDs, investing human and financial resources in diagnosis, education and risk reduction will deliver advances across the board

Ensure access to acute and chronic speciality care

People need to be treated in services and by clinicians in accordance with clinical practice guidelines for NCDs. Access to stroke units and to acute therapies is a backbone in stroke care, as is rehabilitation and long-term support.

Strengthen the primary healthcare network

Access to a solid primary care network is essential to effective prevention and long-term treatment of stroke and NCD. Financial barriers and out of pocket costs for prevention, diagnosis and treatment needs to be reduced. Universal health coverage should cover essential diagnostic and treatment.

Implement the WHO HEARTS Technical package

Taking the seven steps set out in this package would ensure that the right medicine reaches stroke patients at the right time and at an affordable rate.

Every 2 seconds, someone somewhere in the world has a stroke, the clock is ticking and we don’t have time to wait – strengthened actions on stroke and NCDs are urgently needed. Let’s gather our allies, target our actions and work for upscaled efforts. We have had ENOUGH on political inertia on NCDs.

WSO President calls for quick and decisive action on NCDs at UN High Level Meeting

Today the the UN world leaders are gathered to agree and commit to a programme of action to accelerate progress on NCDs. While the proposed outcome document for the UN High Level Meeting on NCDs doesn't go far enough, it is perhaps our best opportunity to date to address the diseases which - world-over - are most likely to kill us and cause immeasurable suffering. WSO President Werner Hacke will attend the meeting and has prepared this oral statement calling for fast and decisive action and offer support to Member States in their work to tackle the risk factors for stroke and other NCDs.

President's Statement for UN High Level Meeting on Prevention and Control of Noncommunicable Diseases, 27th September 2018

My name is Werner Hacke, a Neurologist from Germany and I speak here as the President of the World Stroke Organization.

Every year, almost 15 million human beings die of stroke and many more survive with a lifelong burden of physical, cognitive, mental, and socio-economic impairment. This cruel tragedy leaves families desperate and could be avoided. Stroke is both preventable and treatable.

Stroke shares the same risk factors as cardiac diseases and other NCDs such as smoking, high blood pressure, diabetes, obesity, lack of execise, alcohol abuse and unhealthy foods.

These facts have been well known for decades and the solutions are obvious and cost effective, but actions are slow and reluctant.

Any further delay caused by lack of political will and weak compromises, will result in a massive increase of patients suffering and dying from stroke and other NCDs, especially in poor societies. We have had enough futile discussions about facts that no one can seriously deny.

For many scientists and NGOs, the proposed outcome document may look repetitive, timid and not like a big break through- but at least it's a signal.

Its time to act now and take quick and clear decisions. Otherwise unnessary premature deaths and suffering will grow dramatically, and the responsibility for this unfortunate development will rest with us.

Therefore the WSO will support all member states in their efforts to improve prevention, get rid of dangerous lifestyles, provide access to medical services, broaden health coverage and access to essential drugs, not only for stroke.

Driving Sustainable Action for Circulatory Health

This week World Stroke Organization President Werner Hacke, along with Vice President Michael Brainin, Global Policy Chair Bo Norrving and Chief Executive Mia Grupper, are in New York to attend the Third UN High Level Meeting on Non-Communicable Diseases (#UNHLM3).

The meeting, taking place on the 27th September, is focused on accelerating progress and identifying actions required to deliver on priorities that UN Members States committed to over five years ago.

While the title of the meeting may sound rather dry and the UN might feel a bit distant, there could not be more at stake. This could be our best opportunity to tackle the diseases that are most likely to kill us in the next 10 years.

The HLM will be attended by Heads of State and Minsters from around the world. This is a critical opportunity to hold them to account and to ensure that they use the evidence of what works to drive action on NCDs.

Together, heart disease, stroke diabetes and kidney disease represent the single largest cause of death worldwide, accounting for around 20 million deaths and staggering total of 374 million years of life lost to death and disability in one year alone. Stroke accounted for 116 million years of life lost in 2016 alone. While people of all ages and all continents are at risk, the burden of disease is felt disproportionately in low to middle income countries where individual suffering is compounded by access barriers and capacity of healthcare and where social and economic development is hampered poor health of the population.

The good news is that because these diseases share several common risk factors, coordinated action on prevention and treatment can result in major gains - and at a much lower cost than dealing with the consequences. WHO and World Economic Forum have identified key policy 'Best Buys' and a recent Lancet Taskforce series on NCD economics economics has indicated dollar for dollar returns that would come from addressing in NCDs now. We also know that where governments haven take responsibility and put in place policies and programmes, progress has been made.

This is why, in addition to raising awareness of specific issues in stroke prevention, treatment and support, the WSO is working as a key partner in the Global Coalition for Circulatory Health to push for more urgent focus and to support coordinated efforts by governments and other stakeholders.

Our joint calls are captured in a White Paper which was launched at a UN side event today.  Driving Sustainable Action for Circulatory Health sets out the key pillars of action that will ensure delivery of global goals on disease reduction:

Pillar 1: Prioritising multi-sectoral and cost-effective interventions

Pillar 2: Fostering access to the prevention and care of circulatory diseases

Pillar 3: Mobilising resources for circulatory health

Pillar 4: Measuring and tracking progress

About the Global Coalition for Circulatory Health

WSO calls for Increased Efforts and Investment to Reduce Global Burden of Stroke

Statement of the World Stroke Organization (WSO)

for UN Civil Society Interactive Hearing July 5^th 2018, NYC

In preparation for the UN High Level Meeting on NCDs in September 2018, WSO is participating in the Civil Society Hearing at the UN. The organization is calling for urgent and specific action to reduce the global burden of stroke as part of the global effort to address NCDs. Below is the formal statement that has been prepared for submission to the Hearing.

NCDs in general - and cardiovascular disease with its two main components heart disease and stroke - continue to increase worldwide. Over the last 25 years, stroke has become the 2nd cause of disability and the 2nd cause of death worldwide. The burden of stroke disproportionately affects individuals living in resource-poor countries, where essential services including prevention, acute treatment and rehabilitation are unavailable; or only available to those with financial resources required for access. Most survivors of stroke carry a lifelong burden of physical, cognitive, mental, and socio-economic consequences, which causes an immense individual burden and DALY loss. In 2016 stroke accounted for 116 million years of life lived with disability (DALYS).

The major burden of stroke is in low and middle-income countries and it will grow dramatically unless there is a massive scaling-up of relevant interventions. Given the impact of stroke across all countries and continents, everyone is threatened by stroke. Stroke causes paralysis of an arm, a leg or half of the body, may impair the ability to speak or to comprehend language and vision, and may eventually lead to dementia. Stroke is an avoidable tragedy for patients, families and societies, because stroke is largely preventable and treatable. A significant proportion of global NCD burden can be attributed to stroke. Global improvement will depend on increased awareness, widespread availability and access to quality stroke treatment, primary and secondary prevention, and long-term care.

Research evidence underscores the impact that addressing stroke could have on the achievement of SDG3.  90% of strokes are linked to a few key detectable and modifiable risk factors that include hypertension, smoking, obesity, physical inactivity, and unhealthy diet. These factors are essentially the same for ischemic heart disease, the other main cause of disability and death around the globe.

An under-recognized long-term consequence of stroke and other NCDs, such as heart failure, chronic kidney disease, diabetes and hypertension is the development of dementia, which is also preventable and in some instances even reversible. This neglected long-term consequence represents a further major global health burden. Stroke and dementia often occur together, pose risks for each other and share common risk factors. It can be assumed that a major part of dementias is, in principle, preventable through coordinated action to prevent these diseases.

The WSO calls upon member states to increase their efforts in three domains

1)     Awareness: Member States must strengthen programs that increase awareness of stroke symptoms, stroke risk factors and prevention, and the consequences of stroke.

2)      Access and implementation: We support WHO, NCD Alliance Partners and Member States in their efforts to remove financial barriers to prevention and detection of NCDs through universal health coverage and essential medicines and devices including stroke units and re-canalization treatment as an evidence based policy; this will allow for implementation of population-wide prevention strategies and access to acute stroke services.

3)      Action: We support the WHO and UN Member States in the development of regional and national strategies (such as the HEARTS package and the implementation of WSO Global Guidelines for Quality Stroke Care) to deliver the health-related Sustainable Development Goals, in particular for the reduction of premature NCD deaths by one-third by 2030.

Following the publication of WHO ICD 11 and the classification of stroke as a disease of the Nervous System, we strongly suggest that “stroke” as a distinct disease entity is made more visible in NCD discourse. While stroke has many of the same risk factors as heart diseases, we argue that it requires targeted action and policy responses that reflect the scale of the disease. More importantly, the symptoms of stroke, its treatments and its consequences are unique and sorely underrecognized by the public, adversely impacting access to appropriate treatment and patient outcomes. 

The close relationship between heart disease, stroke, hypertension, diabetes and chronic kidney disease supports the concept of the coalition for vascular health that the WHF, WSO, WHL and the diabetes and kidney societies, together with other stakeholders have created.

The magnitude of the associated health problems and the projected worldwide increase of all these conditions makes an even stronger argument for best practice in prevention and management of stroke and all other conditions which would lower premature mortality, DALYs and preventable dementia.

In summary, the WSO strongly supports all efforts to upscale actions in reducing the burden of NCDs and wants to point out that all actions should be seen as investments, not as cost.

There is much we can do immediately. The first biggest step is to give to stroke the visibility it requires. For many stroke is still summarized under ‘cardiovascular diseases’ but should from now on be correctly be considered and referred to as 'Heart Disease and Stroke’.

#stroke

#enoughNCDs

#HLM3

One World Voice for Stroke

Left to Right: Patrik Michel Swiss Stroke Association, Mia Grupper WSO Exec Director,
Prof Werner Hacke President WSO, Prof Bo Norrving Chair Global Policy Committee, WSO

WSO advocacy around the 71st World Health Assembly and UN High Level Meeting on NCDs

The World Stroke Organization leadership team are in Geneva this week. Alongside WSO membership and patient representatives, they are contributing to critical health policy discussions taking place in and around the 71stWorld Health Assembly.

Announcing our World Stroke Day Campaign Stars

World Stroke Award Winners 2017

The World Stroke Organization is proud to announce the winners of our World Stroke Awards. World Stroke Award winners are selected based on their impact, innovation and alignment with the World Stroke Day campaign theme. World Stroke Day 2017 was focused on stroke prevention, with messaging that aimed to raise public awareness of key risks and the steps we can all take to prevent stroke.

The ‘What’s your reason?’ campaign was the most successful yet, with 218 activities registered in 62 countries. The Campaign Committee received 35 Award submissions which were reviewed against criteria for High Income, Low to Middle Income and Individual Achievement. Here are the winners in each category:

Acha Memorial Foundation delivers stroke prevention awareness in Nigeria

Background

Acha was established as a stroke support organization (SSO) in 2015 by brothers Timothy and MacDonald Oguike, after the death of their father following a stroke. The Oguike family found it very difficult to find the right information about stroke facts, treatment and rehabilitation and the brothers believe this contributed to their father’s death. Through its MasterStroke project, Acha aims to address the burden of stroke in Nigeria through: community stroke awareness and education campaigns; guidance on how to access the right stroke treatment and long term support; and advocacy to decision makers for improved government stroke awareness and risk management services.

Stroke prevention advocacy
MacDonald won the World Stroke Campaign Award 2015 for outstanding individual achievement for his leadership of Acha's MasterStroke program that used an impressive combination of media, social media and mobile technology to raise awareness and understanding of stroke throughout Nigeria.

Stroke supporters around the world - Janet E. Marshman

The World Stroke Organisation is committed to develop more Stroke Support Organizations (SSOs) and stroke support activities around the world. Supportive activity can include information and advice, peer support, family counselling, rehabilitation therapy or welfare services. We want to promote this invaluable activity as much as we can. If you would like to share your stories of stroke support please contact Sarah.Belson@stroke.org.uk

Janet E. Marshman RN, Stroke Coordinator, Virginia USA

What has inspired you to be involved in stroke support/stroke awareness?

      Nursing, is a profession of diversity. You may not think about it in this way, but it provides many adventures in healthcare. That is how I got involved with stroke support. I initially was hired as a nurse to do data abstraction for stroke measures, and two weeks after I was in this role, my hospital asked me to lead the project of primary stroke certification. Part of these responsibilities included community stroke awareness and education.

      How did the project come about?

      I have always had an interest in integration of arts with healing. I asked myself, “How can I create a profound community experience integrating art, stroke survivors and their care partner?” Being that I am an artist myself, I had connections with artists. What if I had artists have a conversation with stroke survivors and their care partners about what it is like to live with a stroke and then the artist would create an art piece from that conversation? So I invited artists and stroke survivors to be part of the project, curating two shows with artworks completed by the artist’s interpreting  living with stroke.

      What does stroke support look like in your country? 

      The American Stroke Association and the National Stroke Association are the foundation for professionals and those who have experienced stroke. Comprehensive Stroke Centers and Primary Stroke Centers are key to the stroke care provided in the United States. This project was recognized by the American Stroke Association.

      What have been the highs so far for your project?

      As part of this project I wanted to engage individuals that had lived with stroke a long time and recent strokes. One caregiver shared, “I have been waiting 40 years to tell my story.” At the end of the project when she was picking up the art piece that the artist had given her, she said, “You have no idea how much healing has taken place for me and my family as a result of this project.”

      What have been some of the outcomes of the projects?

      Because this was a different way to create stroke awareness, it provided a new platform to educate the community about stroke. Healing for our stroke community was center stage. It was a format of stroke education and visual experience having a long term impact in the community.

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

      The quote above says it all.

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

      The community embraced this project. I worked with two art galleries in the community to create the shows of 25 artists, which included water color, acrylic paintings, ceramic pieces, mixed media pieces, photography, poet, writer, paper art/Scherenschnitte and charcoal drawing. Some of the works were created by artists who were stroke survivors and who wanted to create an art piece for the show. The stroke survivors and care partners found new friends in the artists, and the artists loved doing something they had never done before. It was a new and novel approach to creating art.

Canadian Stroke Awareness Month Highlights Stroke Experience at All Ages

Our colleagues at Heart and Stroke Foundation Canada are using the month of June to raise awareness and share stories from people of all ages who experience stroke and their families encounter personal triumphs and face common challenges in their recovery.



The majority of people (80%) survive stroke, and as the Canadian population ages and more young people are having strokes, the number of people living with stroke and requiring support will continue to increase. In fact, there are more than 400,000 Canadians living with long-term disability from stroke, and this number will almost double in the next 20 years.


Half of all Canadians living with stroke need help with daily activities such as eating, bathing, dressing, going to the washroom and getting around and more than 40% require more intense support. Yet many needs are not being met. While some excellent resources are available in communities, they are too few and mostly in major centres, and barriers exist around awareness, access and cost.

There are unique challenges in stroke recovery at different ages. Kids brains’ are growing and recovering at the same time, and can face cognitive and behavioural issues. Younger adults encounter issues around: being able to drive again, returning to work or school, raising young families, and long-term finances stress. The average older stroke patient has five other chronic conditions, and many older patients and their caregivers face isolation and depression. Family caregivers play an essential role in stroke recovery yet they rarely receive the preparation and support they need.


The Heart & Stroke 2017 Stroke Report looks at the stroke recovery journey across the ages, highlighting common challenges and issues that occur at specific life stages: babies and children, younger adults and older adults. It examines the essential role of the family caregiver, highlights the importance of placing the patient and family at the centre of care, and identifies areas where system improvements could support the changing profile and needs of people who experience stroke.


The report is available at heartandstroke.ca/strokereport

World Health Day #depression #letstalk #WSO

Every year, about 16 million people worldwide have a first ever stroke. Of this population, about 5 -7 million people die. Among the survivors, depression occurs in approximately 1/3.  The pathophysiology of post-stroke depression (PSD) is poorly understood; proposed mechanisms include psychological responses to functional disability, social mal-adaptation, genetic susceptibility and alterations in neurotransmitter due to brain damage. Important predictors of PSD include physical disability, depression before stroke, and cognitive impairment. Individuals with PSD have higher healthcare use, poorer functional outcomes and quality of life, and higher mortality. Pharmaceutical treatment (selective serotonin-reuptake inhibitors or tricyclic antidepressants), psychosocial intervention, and, preferably, both are helpful in improving patients’ depressive symptoms. 

Considering the high prevalence of PSD, its negative impact on patients’ outcome, and treatability of this problem, medical personnel should be aware of the PSD, and should promptly screen depressive symptoms and apply evidence-based management.  Unfortunately, PSD has been underrecognized, underinvestigated, and undertreated. 

One of the missions of WSO is to educate health care personnel in every corner of the world this important problem and help them to facilitate research so that we can more clearly understand the pathophysiology of PSD and determine optimal strategies to prevent and treat this condition. 

Jong S. Kim, on behalf of WSO and Associate Editor for the International Journal of Stroke 

Improving stroke treatment in Israel: from public awareness to political action

How Neeman Stroke Survivors campaigned to improve stroke treatment and outcomes

1. What are the key issues around stroke treatment in Israel? 

Key issues in Israel are lack of public awareness of risk factors and early warning signs of an oncoming stroke to ensure speedy arrival by ambulance to emergency stroke care. We also have an absence of stroke units in many areas throughout the country, developing more comprehensive access to these units would help us to deliver maximal medical care in the shortest possible time. Within stroke care centres we also have insufficient trained professionals to perform catheterization – a procedure that can remove blood clots and make a big difference to patient recovery. At present there are today only 8 specialists in Israel, which is a completely inadequate number to fulfil the needs of a population over 8 million. Once patients are out of acute care, we also have a lack of rehabilitation centers and rehabilitation beds and not enough professionally trained allied health rehabilitation personnel.

 2. Why did you choose this particular approach to raise awareness of the treatment needs of people having a stroke? 

Our strategy was to operate in two parallel directions: one was by using various media, especially a TV campaign with a large budget to influence the public, and the other was to influence decision-makers in the Ministry of Health, including the Health Minister and senior echelon from his office, by publicly signing the Israeli National Stroke Policy Declaration for Lowering Stroke Morbidity, at a large, official event. This two-pronged, multi media coverage was expected to draw interest of the public to stroke in general and to the feasibility of identifying early signs as well as influencing key decision-makers to fund the national program for long term, ongoing stroke treatment.

3. What were the most successful parts of the campaign? 

The integration between the various activities worked particularly well. We were able to generate a highly successful, generously funded film sponsored by the Health Ministry, which went viral, as well becoming as the subject of talk shows and popular news columns. The National Conference was attended by top level professionals from the fields of stroke prevention, treatment and rehabilitation, including the acting president of the WSO (by video) and in person participation of the president elect of the WSO. Our end result - a commitment was gained from the Minister of Health to continue in the future to prevent stroke and thus ensure this would not be a temporary campaign.

4. Can you describe the immediate impact of the campaign a) on the public and b) on healthcare policy makers? 

In the first stage we know of an increased number of persons who came to emergency care with early signs of a stroke and whose lives were saved. In addition, we received moving phone calls from the families who personally wished to thank us for saving their relatives from stroke. The many requests from the media for interviews from stroke survivors and Neeman representatives, together with increased utilization of social media all displayed a significant increase of public awareness to early signs of a stroke. In addition, the Health Ministry decided to set up a special working team to identify the issues involved in rehabilitating survivors of stroke and to submit recommendations, a subject that has been neglected up until now.

 5. What does it mean to you to receive an award from the World Stroke Campaign? 

It's a feeling of great satisfaction from the esteem granted to our persistent efforts over 20 years and the recognition of the effectiveness of the selected strategy chosen in our course of action. Winning the award also raises the prestige of the activities of NGOs in health care in general and particularly those which represent stroke survivors and their families, as well the many professional advisors and colleagues who assisted us. It is indeed a great honor!