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!

When it comes to Stroke - Don’t Be the One

World Stroke Day 2019 will focus on stroke risk and prevention

Sample poster with WSO member co-branding

The World Stroke Organization has announced the theme for World Stroke Day 2019. With a focus on stroke prevention, the ‘Don’t be the One’ campaign aims to mobilise members, partners and the wider stroke community to raise public awareness of our individual life time risk of stroke and to equip as many people as possible with potentially life-saving prevention information and tools.

The rationale for the campaign message is the recent WSO analysis of the Global Burden of Disease, which shows that globally the lifetime risk of stroke has risen and now stands at 1 in 4. Combined with the Interstroke findings that showed around 90% of strokes are linked to a small number of easily addressed risk factors, the potential impact of public understanding of stroke risk and prevention awareness is clear.

Speaking about the World Stroke Day campaign, World Stroke Organization Vice President and Campaign Committee co-Chair, Sheila Martins said ‘For me the 29^th October is always such an exciting day for the stroke community – it’s the one day of the year that we can come together globally and to make as many people as possible aware of stroke. This year our message When it comes to stroke, think prevention – Don’t be the one.’is relevant and essential to everyone and we look forward to seeing the stroke community taking up the campaign in countries around the world!’

Co-Chair Deidre De Silva and a leading awareness campaigner Singapore ‘Our team strived to deliver a campaign that will resonate with diverse populations around the world. Stroke is not prevented by hoping it will never happen to you. This campaign encourages everyone to be proactive by understanding their stroke risk and taking the steps to prevent stroke and its devastating consequences.'

World Stroke Day Campaign Resources

A campaign guide for members and the public will provide guidance on how to join the global prevention awareness effort. This will be available from the revamped World Stroke Day website. Members and partners will have access to campaign resources including the campaign video, gifs, editable posters, infographics, social media posts and translated prevention factsheets. 

Stroke Riskometer 

The Campaign team is also working in close partnership with the Stroke Riskometer team at Auckland University of Technology to promote the WSO endorsed Stroke Riskometer as a tool to understand individual stroke risk and to identify individual risk factors. Riskometer users will be encouraged to conduct their own risk assessment and to share the app on social media tagging four friends. If one person who is tagged downloads and uses the app, they will have free access to an app upgrade that will support them to take appropriate action to reduce their stroke risk. 

To find out more about how you can support the campaign please email campaign@world-stroke.org

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Sharing all of our stories to raise awareness of stroke

At the World Stroke Organization, our work with patient stroke support organizations (SSOs) promotes the voice of people affected by stroke in our activities, including the World Stroke Congress and the World Stroke Campaign.

We recognise that people affected by stroke have unique insights into the experience of having a stroke, the effects, the care received and long term needs. These insights can and should inform stroke policy development and service provision. We also know that the voice of stroke survivors adds legitimacy to our advocacy work.

We work closely with our SSO members to capture and share stories from stroke survivors, carers and family members. These stories detail the lived experience of having a stroke, the effects and the impact on peoples’ lives. Often these stories include reflections on individual behaviour and making changes to reduce stroke risk. All the stories are deeply personal, and can describe feelings of pain, fear, confusion and also hope; a new normal and strength.

Credit: Stroke Foundation Australia

Recently to mark World Hypertension Day, Sharon McGowan, CEO of the Stroke Foundation Australia and also Co-chair of the SSO Committee at the World Stroke Organization, shared her own story.  ‘I thought long and hard about sharing my own health story. I was encouraged by the many stroke survivors who generously share their stories to encourage, educate and support our community. If just one person reads this and takes action to get their blood pressure checked then sharing my shamefully unhealthy past will be worth it’.

As a champion for the voice of people affected by stroke, by sharing her own personal story, Sharon is a great role model to others, and has added a deeper appreciation at the World Stroke Organization of the courage it takes for people affected by stroke to share their personal experiences so openly.

If you would like to add your voice and experience to the World Stroke Organization’s work to raise awareness of stroke, please contact the International Development Manager, Sarah Belson sarah.belson@stroke.org.uk

Changing the devastating effects of stroke in Malawi

The Malawi Stroke Unit Team has a goal to provide a cost-effective stroke unit that will help revolutionise the lives of people in Malawi that are affected by the implications of stroke. 

University College London Hospitals has partnered with Queen Elizabeth Central Hospital, Blantyre, Malawi, the Malawian government, Liverpool University (via the Wellcome Institute in Malawi), and UCL, to build and then run a stroke unit. 

The UK team are helping to plan the unit, helping to develop the unit operational systems and will help train the staff, but the unit itself will be led and run by the Malawian clinical team. The aim of the partnership is to develop a sustainable model for stroke care in Malawi. Currently there are no stroke units at all in the country, but very high rates of stroke incidence and stroke related death. 

Stroke is a common presentation at Queen Elizabeth Central Hospital and is in the top five reasons for hospital admission and top three reasons for in-hospital mortality (SPINE 2012 analysis).  Malawi currently has a poor stroke outcome compared to its neighbouring countries, with local data showing that nearly 40% of people having a stroke die at six months.

Specific risk factors for death are increased stroke severity, advanced immunosuppression from HIV infection and age. The former two risk factors are potentially preventable with easily achievable intervention such as early swallow screen, immediate therapy (where guardians could be trained to deliver this), close vigilance for infections whether it be central nervous system infections, aspiration pneumonia or urinary tract infections, and initiating and maintaining secondary preventative treatment. 

The target over the next 10 years is to deliver a seven-bedded stroke unit that is embedded within Queen Elizabeth Central Hospital. This unit will serve as a national centre of excellence for delivery of stroke care, training and research to further inform best practice, and ultimately improve the burden of stroke in Malawi. The aim is also to ensure that the stroke unit is culturally appropriate and sensitive to the limited resources available in Malawi.

This partnership offers collaborative opportunities for the stroke multi-disciplinary team, both in the UK and Malawi. Thanks to funds from TNM (a Malawian telecommunications company), construction of the building has already begun and is scheduled for completion by Autumn 2019 along with an ongoing training and exchange programme.

For more information on supporting the partnership please visit:

https://malawistrokeunit.org/

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Survivor Voices Heard Loud and Clear in Stroke Awareness Month

Sharing member highlights from Stroke Awareness Month 2019

In many countries May is traditionally the month to talk about all things stroke. Across the USA and Europe Stroke Awareness Month has been marked on the calendar of stroke organizations and stakeholders as a key opportunity to raise public awareness and start conversations about stroke. 

Famous or not speaking publicly about stroke, while crucial to raising awareness and reducing the stigma of stroke, can be extremely daunting. But the decision to  ‘step up to the plate’ by several high-profile stroke survivors in May 2019 has given stroke perhaps higher visibility than ever and served as a vital support to those of us who have important stories and information to share.

The decisions of Michael Johnson, once the world’s fastest man, talking about his long journey to recovery after stroke and of Game of Thrones actress Emilia Clarke to share her story have been incredibly helpful in reaching the wider public and showing that with the right care, treatment and rehabilitation stroke is treatable and beatable. The death of movie director John Singleton at the age of 51, while just one of many less well known people who have lost their lives to stroke recently, did much to highlight the tragic impact of stroke, the fact that many strokes happen to younger people.

In the UK, the Stroke Association the country’s first ever TV stroke advertisement was aired in May as part of a partnership campaign with the UK’s Channel 4 network. The 60 second piece which is part of a wider media campaign, uses the voices and faces of stroke survivors to describe the moment that their stroke hit, the need for support with recovery and is working to ‘change the face’ of stroke survivors.

Elsewhere in Europe, members of SAFE kept the WSO #UpAgainAfterStroke campaign flag flying with a month-long focus on stroke rehabilitation and long-term support across the region. From politicians to family members a multitude of voices shared their perspectives on the urgent need to develop better and more equitable access to rehabilitation and care. The translation and dissemination of the European Burden of Stroke report gave policy weight to the awareness campaign offering a valuable advocacy tool for stroke organizations in the region. 

Outside Europe, but equally focused on stroke survivor experience, the new but fast-growing Michael and Francisca Foundation in Nigeria took the opportunity of Stroke Awareness Month to run a special event for stroke survivors to connect, share stories, challenges and inspiration. 

In the USA the American Stroke Association focused on the fact that the biggest single risk factor for stroke is having already had a stroke.  ASA’s campaign ‘Don’t let stroke strike twice’ was a supported by an online patient education resource highlighting key risk factors and encouraging survivors to ask their doctor to create a personalised stroke prevention plan.

It really seems like a change is happening in relation to stroke awareness and as we look forward to World Stroke Day, we will be learning from and building on the work of our members in May and collaborating to make the many voices of stroke sound loudly on October 29th.

Well done to all of our members who worked hard during May to raise stroke awareness. If you would like to share your Stroke Awareness Month highlights with us, you can post to our Facebook page or tag @WStrokeCampaign on twitter.