Thursday, December 20, 2018

Stroke in Low and Middle-Income Countries: UK Networking Event

In the past decade, a number of partnerships have developed between clinical and research teams working in stroke care in the UK, and their counterparts in several low and middle-income countries (LMICs). Earlier this year, an inaugural network event was hosted by the Wessex Ghana Stroke Partnership.  The event was attended by representatives from ten different projects, and was supported by the Tropical Health Education Trust (THET) as part of a Health Partnership Scheme Grant. Attendees are working with stroke services in Ghana, Sierra Leone, Rwanda, South Africa, Uganda, India, Sudan and Vietnam. Projects span practice development, capacity building, and research, across the stroke pathway.  The aim of the network is to bring together UK-based teams to:  

•          Share and reflect on the successes and challenges to supporting sustainable stroke care development in LMICs; identifying common themes and sharing potential solutions. 
•          Identify areas for collaboration, where health partnerships could work together to develop solutions and/or resources that enable stroke care development in LMICs. 
•          Provide a forum for UK-based health care professionals to reflect on the personal development opportunities and challenges associated with involvement in a LMIC health partnership.

Participants decided prior to the event on three key discussion topics: competencies and training; strategic influencing; and demonstrating impact.  The group shared their individual experiences, noting recurring themes and reflecting on what was known, what had been learned, and what could be done better. In this blog, we share some of the themes from these discussions. 

Competencies and Training 
In LMICs, there is typically a less structured system for training and development, and the concept of ‘competence’ differs between countries. Healthcare workers are less likely to be held individually accountable, and may have a different approach to their own professional development than their counterparts in higher income countries (HICs).  It is therefore important to establish what motivates health care professionals to develop their skills and knowledge.  Providing post-training certificates and financial recompense for attending training were commonly expected and appreciated by attendees. 
Staff in LMICs may be more familiar with a didactic approach to training, and can find it difficult to engage in clinical, ward-based or simulation training. Translating theoretical knowledge into consistent changes in clinical practice is particularly challenging.   Multi-disciplinary training was not common but having a variety of health care professionals attend training was useful in helping staff consider how to implement new skills clinically. Keeping focused with a small cohort of trainees also helped build relationships and reinforce clinical skills.  ‘Train the trainer’ models of staff development were useful to make the most of the limited time that UK teams are able to spend in the LMIC partner countries, and to ensure sustainability.
To keep the content appropriate, training topics should be decided and developed with local staff. Focusing on the “must do” messages, rather than the “should do” and “could do” can help avoid overwhelming trainees with too much information. Partnerships had, so far, focussed on core, evidence-based aspects of stroke care that can be improved with little resource, such as introducing bedside swallow assessments and basic dysphagia management, or encouraging early mobilisation.  Creating resources specifically for the context to help deliver messages may also be helpful: for example, in Sudan a local artist created educational posters for display in the hospital.  
Despite lack of resources and infrastructure, many LMIC stroke professionals are eager for knowledge about more advanced or technical interventions (e.g. thrombolysis).  Dedicating training time to facilitate this and continue aspirational clinical practice should be considered; keeping a balance with core stroke skills.  Furthermore, attitudes towards rehabilitation differ considerably from those in HICs, with patients often playing a passive role. Informal caregivers tend to “do for” the individual, and intensive rehabilitation and participation may be viewed by some as cruel.  Equally, expectations and beliefs regarding recovery are challenging, as patient and public understanding of stroke is limited.

Professional groups often work in silos within LMICs, in contrast to the multidisciplinary ethos of HIC stroke care.  Professional groups can be reluctant to share skills across professions, which in part may be due to how payments for services are made. Another barrier is the scarcity of some health professions, such as occupational therapy and speech and language therapy, who are not easily accessible or are totally lacking in many LMIC stroke services.  Broadening the remit of existing professions is one way to work around this.  
There are also hierarchical barriers to team working, with medical models of care predominating. Local leadership is needed to empower all team members.  Role modelling by UK teams and developing processes that enable multidisciplinary work can facilitate movement towards a more multidisciplinary approach. Provision of leadership training for stroke staff has assisted with this in Ghana.  

Demonstrating Impact
Demonstrating the impact of interventions through monitoring and evaluation (M&E) is integral to any partnership work in LMICs. It is important to have open conversations with all key stakeholders when planning any project, to agree on how impact will be measured, so that any M&E is both valuable to all and feasible to complete.  
Patient and public involvement (PPI) should not be overlooked.  However, patient roles and degree of agency are often different in LMICs, which can make engagement more difficult.  As a minimum, teams should consider how to keep patients informed, disseminate information about their projects to the public, and support LMIC clinical teams to think about considering the patient voice.   
For LMIC teams, appropriate information can help service evaluation, empower staff to lobby for change, and motivate teams to maintain positive working practices. Adapting any ongoing M&E may be easier than starting afresh. For the results to be useful to partners, they need to be able to interpret their own data and see how change may be implemented from the results.  It is therefore also important to consider cultural, organisational and hierarchical restrictions to collecting data or implementing change in their setting. 
As well as being useful to frontline staff, demonstrating impact is crucial to demonstrate success to project funders. Funders will expect to see measurable change, so when deciding what the intended impact of any intervention is, consider what is realistic, and the possible consequences if expected outcomes are achieved. 
Clinical measures are often used despite the limited research into the generalisability of common stroke outcome measures in LMIC contexts. Most partnerships have used clinical process measures (e.g. ‘swallow assessment completed’) rather than patient outcome measures to evaluate the success of projects. HIC stroke standards cannot be simply transplanted to LMIC settings; for example, access to dedicated stroke beds may be affected by local politics or funding, and time to assessment will be impacted by local service set up and funding. Standards must be culturally relevant, and must evaluate what is important to local systems and people.  There may also be issues with accurate completion of data collection tools by local staff due to a culture of not admitting error or acknowledging poor practice.  This has an impact on the validity of any M&E.
These partnerships also have an often unrecognised potential to contribute to the professional development of the HIC staff involved, who can gain invaluable skills, experience, cultural awareness and knowledge that can be used in their own workplace.  Further consideration of how to capture and demonstrate this is needed, and could be used to influence employers, governors and funders to support ongoing partnerships.
Strategic influencing
This occurs at multiple levels and settings.  In LMICs , we influence and are influenced by patients, the public, clinical teams, hospital management, and local and central governmental, while we also need to  influence HIC funders, healthcare staff and governing bodies, and other stroke clinicians and researchers.
Change should not be enforced just through applying policies from HICs (e.g. NHS policy) to LMICs; instead it is necessary to build relationships based on trust and open communication, understand cultural influences, and facilitate local staff to initiate and steer the direction and speed of change. Stakeholder analysis was recognised as being useful to enable agenda alignment.  
Many partnerships have experienced that there are often a few key individuals in partner countries who have driven forward change and had strong influence on others locally; finding these ‘door openers’ is important and can greatly influence the success of any project.  
Some common ways for motivating teams on the ground were small, context-specific gestures e.g. providing positive feedback and mentioning staff’s success in newsletters and blogs. Supporting key staff from LMICs to visit HICs can assist their collective understanding of different healthcare systems and consolidate their learning. Stroke care was acknowledged to be an unrecognised and underdeveloped clinical specialty in some LMICs and the building of pride in stroke care by developing understanding of stroke and the possibility of improved outcomes for patients is important. 
Influencing higher stakeholders and encouraging policy change is seen as a critical component in creating long-term change.  The impact of governmental buy-in varies greatly between countries; for some, governmental policy is enforced strictly, for others a policy or procedure may be in place formally but staff on the ground are not empowered to implement it. Political instability and corruption are also potential challenges. Teams may find strength, increased stability and increased influencing power though uniting with other external organisations, such as local patient/carer groups, civic organisations, and national or international stroke organisations.  
Where there is no continuous in-country presence by HIC staff, local staff should be supported via other means (e.g. Skype support) outside of visits.   Similarly, staff returning from visits to LMICs should ensure they handover purposefully and robustly to colleagues, to maintain positive influence. 

Recurring themes
Some of the key challenges experienced by stroke partnerships are: 

  • ·      A different concept of competency/training needs
  • ·      Culturally different motivations for working in healthcare
  • ·      Resource constraints
  • ·      Hierarchical systems
  • ·      Implementing  knowledge into clinical practice
  • ·      Sustaining  change 
There were also common lessons learned, and views on where to focus moving forward.  
Some of the key, take-home messages, were:

  • ·      Understand the context
  • ·      Work in partnershipand communicate
  • ·      Be realistic and address sustainability
We found that there are many parties involved in improving stroke care in LMICs, and we had much to learn from one another. Despite the diverse focus of our individual projects, we faced similar challenges and benefited from sharing knowledge and experiences.  Resources such as standards, guidelines, patient information tools and measurement approaches are useful to all, but they are not always common knowledge.  We decided a forum to share knowledge was a positive move forwards. We must also ensure partners from LMICs are involved in this in the future, to increase our reach and understanding.
Please do get in touch if you would like to join this forum!
The information within this Blog reflects the reported experiences of UK partners, who attended the networking event.  It cannot necessarily be applied to all LMIC settings, and does not directly represent the experience of LMIC partners themselves.
Written on behalf of the attendees by Sophie Bright (Kings-Sierra Leone Partnership), Amelia Shaw and Louise Johnson (Wessex-Ghana Stroke Partnership), Jo Gibson (UCLan Global Health).

Thursday, December 13, 2018

Two go-getting, optimistic and motivated 29-year-olds are #UpAgainAfterStroke

Elise Mathy and Louis Gustin have both had a stroke. Elise suffered an ischaemic stroke in 2017 at the age of 27 and as a result has hemiparesis on her left side. Louis had a stroke in 2015, when he was 25, and has right hemiparesis and aphasia.   

Louis never lost courage or hope. He has been fighting for over three years, and continues to do so today. Little by little, he realised that dialogue is the essence of mankind and that communication defines a human being. After many years of struggle, Louis has put his life back together. Today he can communicate very well indeed, and now he wants to communicate with others across Europe; about strokes, disability, and how they are managed in Europe.

When tragedy struck, Elise had not finished her studies in medicine, but the stroke didn’t stop her – it simply set her back. She continues her rehabilitation in order to regain more of the motor functions that are essential for her (regaining movement in her left arm). 2019 will be a crucial year for Elise, because two years after the stroke that knocked her life off course – she intends to finish her medical studies.

Both Elise and Louis have strength; the strength to fight for what they want most to be #UpAgainAfterStroke; for Louis to regain his speech and for Elise to regain the use of her left arm.

And together they have a plan. For about a year they have been working on a project that meets their shared goals for discovery and adventure. But it’s not just fun and games. They want to share the story of what happened to them, talk about what opportunities for prevention exist, how their debilitating effects of stroke are treated, as well as about the pressing need for rehabilitation using all the research currently available to neuroscience.

The couple want to travel across Europe to meet aphasia and stroke associations, to share their stories and raise awareness. Their vehicle will also be their bedroom. What better than a van? But an adapted one, because Louis uses his left arm and Elise uses her right. They plan to document their journey through a video and book, and the journey will culminate in a conference in France, where they’ll make recommendations for improvements in stroke treatment and care across Europe.

Through their journey they also aim to challenge perceptions about disabilities and about life after stroke.

If you would like to follow Louis and Elise’s incredible project and get involved in supporting their #UpAgainAfterStroke journey please visit or 

Saturday, December 8, 2018

Get the recognition you deserve - World Stroke Day Awards 2018

Now that we have all had time to reflect on the impact of our World Stroke Day 2018 events, maybe it's time to get a bit of kudos for all your hard work by applying for a World Stroke Day Award.

World Stroke Day Awards are given to organizations and individuals who demonstrate commitment, creativity and impact in adapting and rolling out the key theme of World Stroke Day at national or local level.

On October 29th 2018 WSO focused global attention on the 80 million people living in the world who have survived stroke and the long-term support needs of stroke survivors and caregivers. We achieved enormous reach and couldn't have done it without the hard work of our members and stroke stakeholders around the world.

If you want your campaign to be considered you can apply for an award using the online application form on the World Stroke Campaign website.

Award winners will receive free annual membership of WSO and will be invited to attend a World Stroke Congress Award Ceremony in 2020.

Closing date for applications is 21st December.  Award winners will be announced in February 2019.

Thursday, November 29, 2018

Global Burden of Disease Brain Summit

Left to right: Bill Carrol, WFN, Valery Feign, AUT,
Valeria Caso, ESO, Michael Brainin WSO
WSO President Prof Micheal Brainin was in New Zealand alongside global neurology leaders attending the Global Burden of Disease Brain Summit. Hosted by Auckland University, The Lancet-Neurology and the Global Burden of Disease Working Group from Washington University, the event shared the latest GBD data across a range of brain diseases around the world.

Opportunities to collaborate in particular to address the educational and training needs of clinicians in Africa and other developing regions were discussed with the WFN President Bill Carrol. 

Tuesday, November 20, 2018

Members of South African SSO are #UpAgainAfterStroke

Congratulations to World Stroke Organization SSO member, Helderberg Stroke Support Group (HSSG), as it prepares to celebrate its 25th anniversary on 23rd November.

The SSO recently carried out a survey with its members and asked them to rate the impact their attendance at HSSG community groups had made on their lives. This could be physically, mentally, emotionally or in terms of overall improvement in speech, language and general function after their stroke.

The results from the survey are very positive, with 79% of people stating that the HSSG has been very helpful, 14% helpful and 7% moderately helpful.

Comments from group members show just how much the SSO helps stroke survivors in the town of Somerset West, in the Western Cape, to get Up Again After Stroke:

I was very weak when I came here. I was also trapped by low self-esteem. I have learned a lot and I am no longer dependent, I can do a lot more for myself – it’s very beautiful.

The exercises help me to get up every day.

The group keeps you fit and it means that you can do a lot more for yourself because of the exercises.

Thank you, I can now do things for myself.

It helped me a lot. When I joined the group I could not do anything for myself -
it has helped my fitness. I am very happy.

I feel so much better since I joined the group because I no longer feel frightened and I can stand on my own legs.

The group is a good foundation for those who are not fortunate enough to get private help. It is good not just for physical recovery, but for mental recovery as well.

After 25 years and with such positive feedback from members, HSSG is still striving to improve the service it provides.  The group was fortunate to receive funding from the DG Murray Trust specifically for training for its assistants, and they recently attended training on transfers, wheelchair dexterity, mobility aids and assisting stroke survivors with walking.

Congratulations Helderberg Stroke Support Group!

Saturday, November 17, 2018

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!

Wednesday, November 14, 2018

The importance of building alliances to develop stroke support in Mexico

Sandra Rosellini Ochoa from World Stroke Organization SSO member, Asociación Nacional Contra el Infarto Cerebral, A.C. (ANCIC), talks about her experience of stroke and setting up an organisation.

I was inspired to get involved in stroke support because I had a massive stroke. Stroke
support in Mexico is very weak, with very little information. As a stroke survivor I realized that no one was talking about stroke, so my husband and I started a fund to see if we could get enough money to start an association. It took us many years of personal savings and investigation before we could begin the association.

The outcome today is that we have an association legally recognized by the Mexican Government as a nonprofit association that benefits all Mexicans. We sustain our project ANCIC through our personal financial commitment as it is so important for our fellow Mexicans. Stroke survivors and their families have been very grateful for the information we can provide at their moment of crisis, as well as preventive written material and our website. As a stroke survivor I know that you do not necessarily understand the gravity of what you just experienced and your family is devastated.

We first approached doctors, and what we found is they have no money, so we went to the medical associations, and they have no money. We went to the government and they have no money. The way forward was an alliance with the National Stroke Association in the USA. There we found a support through a joint alliance because they had very little material in Spanish. We chose 16 pieces of their information to translate, taking in the consideration which themes were the most relevant in Mexico. We presented our written material to the Instituto Nacional de Neurología y Neurocirugía in Mexico, which approved the translation.

Later on we approached Fundación Carlos Slim de la Salud, as they did not have information about stroke, so now we also have an alliance with them. Now that we have published materials for doctors, survivors, medical community and their families, they have all been very grateful and we hope that turns into future donations to keep our work up to date.

My husband, my five daughters and my friends have helped in my recovery. They did not understand what a stroke was and their fear kept some of them from investigating how to reduce their possibility of a stroke. During my time in hospital a member of my family was with me every single day. All of my friends were told to write letters, cards and send pictures so I could remember my past life. I received flowers gifts and calls, I was never forgotten and I have still have all those cards and letters from 22 years ago. They kept me focussed on starting an association.

For more information visit:

Monday, October 29, 2018

A World Stroke Day Message from India

World Stroke Organisation Vice Chair Prof Jeyaraj Pandian shares his message to the public about the need for increased attention to reduce the burden of stroke in India and other Low and Middle Income Countries.

Sunday, October 28, 2018

Stroke Leaders Highlight Global Cost of Government Inaction

Today on World Stroke Day, October 29, the World Stroke Organization, is calling for urgent action and investment to address the growing burden of stroke and circulatory diseases globally. 

Highlighting the disappointing outcome of the recent UN High Level Meeting on Non-Communicable Diseases (NCDs) the WSO President, Prof Michaeal Brainin said, ‘The impact of stroke on individuals, families and society as a whole is devastating. Stroke survivors can face significant impairment of movement, speech, cognition alongside debilitating psychological, social and financial problems.'

'This devastation is compounded by knowing that 80% of strokes could be prevented by addressing a small number of risk factors, including hypertension, diet, smoking and exercise. Preventive action on stroke would also contribute to a massive scale reduction in CVD, cancer, diabetes and other significant causes of death and suffering worldwide.

'With this knowledge, the current lack of political will and investment is incomprehensible, especially given the costs of such inaction. While 5.5 million people die as a result of stroke each year, 80 million survivors around the world currently live with some form of disability or impairment. The costs to individuals is incalculable and the cost to society is astronomical.’

A recent policy document ‘Driving Sustainable Action for Circulatory Health’ published by the WSO and its partners in the Global Coalition for Circulatory Health, has calculated the global cost of circulatory diseases, including stroke, at US$957 Billion in 2015. On current projections this figure is set to rise to US$1044 Billion in the next 12 years.

The white paper sets out four key areas for action that, if enacted, would ensure delivery of global goals on disease reduction which are driving the rise in direct and indirect costs of NCDs. These include legislative interventions to:

1. Deliver policies and programmes to address tobacco, alcohol and unhealthy foods, promote clean air and deliver a built environment which fosters safe physical activity.

2. Ensure access to affordable, quality-assured essential medicines, delivered by adequately trained staff, including access to multi-therapy treatments.

3. Mobilise sufficient resources to combat non-communicable diseases including stroke. The taxation of unhealthy products such as alcohol, tobacco, unhealthy foods and non-alcoholic beverages (such as sugar-sweetened beverages) would generate revenues that could be directed to further prevention and control of circulatory diseases at global and national levels.

4. Put in place reliable, simple, and fit-for- purpose surveillance systems for monitoring the burden of stroke and the prevalence of NCD risk factors and treatment of stroke at national and global levels.

Prof Brainin concluded 'At the recent UN High Level Meeting on NCDs in New York, governments delivered a weak response to a global crisis and agreed to wait 7 years before reviewing progress. In that time another 38.5 million people will die of stroke. We can't wait until 2025 to calculate our losses, we need strong leadership and bold action to save lives now.'

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