Leading the way in home based care for stroke survivors in Zambia

New stroke support organisation (SSO), National Stroke Aid, Zambia leads the way in home based care for stroke survivors.

National Stroke Aid, Zambia has become the latest member of WSO. The SSO was founded at the beginning of 2019 by Mr. Phanuel Mabbola, a physiotherapist working in rehabilitation with stroke survivors. Phanuel recognised the extent to which stroke survivors are neglected or ignored in the city of Lusaka and he decided to establish a home based physiotherapy service. As well as physiotherapy, the service will also include healthy lifestyle education.

In Zambia, stroke is a leading cause of death and disability and is increasingly affecting a younger population, with hypertension the most common risk factor.

Although in the course of his work Phanuel observed that people in the community know that stroke is sudden and can happen to anyone at any time, prevention and managing risk factors is less well understood. In addition, many stroke survivors have little or no access to rehabilitation and recovery services.

Addressing these needs is the primary focus of the newly established National Stroke Aid, which will provide stroke awareness, healthy life style education and facilitate or provide home based care to stroke survivors. The objectives of the SSO are:

·        To help reduce the incidence rates of stroke through sensitisation of the community on causes of stroke and educating society on the need for healthy life styles

·        To restore stroke survivors’ body functions through physiotherapy and provide occupational and home based care

·        To advocate for policy that includes stroke survivors’ empowerment, and involvement in decision making institutions

·        To organise workshops or seminars and hold social gatherings for capacity building among the stroke survivors and the membership of organisation

National Stroke Aid will draw its membership from the community, in particular those that have been affected by stroke.  

In January, the Permanent Secretary of the Zambian Ministry of Health recommended National Stroke Aid for registration as an NGO; recognising its role in complementing government efforts to provide home based care to stroke survivors, and that the organisation’s activities are in line with the National Health Strategic Plan.

We are excited to welcome National Stroke Aid to the global SSO network and commend Phanuel on his commitment to providing home based care.

Up Again After Stroke

This year the focus of World Stroke Day is on life after stroke. Around 80 million people living in the world today have experienced a stroke and over 50m survivors live with some form of permanent disability as a result. 

While for many, life after stroke won’t be quite the same, our campaign aims to show that, with the right care and support, a meaningful life is still possible. As millions of stroke survivors show us every day, it is possible to get #UpAgainAfterStroke.

While the impact of stroke is different for everyone on 29th October 2018, we want to focus the world’s attention on what unites stroke survivors and caregivers; their resilience and capacity to build on the things that stroke can’t take away and their determination to keep going on the recovery journey.

Join with us

Our website has resources and key messages to help you raise awareness of life after stroke issues on World Stroke Day. Here's how you can join with us and show support and solidarity with stroke survivors on World Stroke Day:

• Download campaign social media resources from the campaign website www.worldstrokecampaign.org; If you have some design skills and software and want to adapt materials for local use contact campaign@world-stroke.org
• Change the heading pictures on your account and share social posts with your networks.
• Share your personal experience as a stroke survivor or caregiver on Facebook and twitter. Be sure to include the campaign hashtag #UpAgainAfterStroke so that your experience is seen and shared.
• If you don’t use social media, share your story of stroke recovery on the World Stroke Campaign website. 

PODCAST RELEASES Sedentary behaviour after stroke: a new target for therapeutic intervention: Sarah Morton

Over the last 10 years evidence has emerged that too much sedentary time (e.g. time spent sitting down) has adverse effects on health, including an increased risk of cardiovascular disease incidence and mortality. A considerable amount of media attention has been given to the topic. The current UK activity guidelines recommend that all adults should minimise the amount of time spent being sedentary for extended periods. How best to minimise sedentary behaviour is a focus of ongoing research. 

Carmen Lahiff-Jenkins, Managing Editor of the International Journal of Stroke spoke to Dr Sarah Morton lead author of the opinion piece Sedentary behaviour after stroke: a new target for therapeutic intervention.

The International Journal of Stroke is the flagship publication of the World Stroke Organization - please consider becoming a member.  https://www.world-stroke.org/membership/join-wso

DOWNLOAD HERE

http://journals.sagepub.com/doi/full/10.1177/1747493018784505

Kool Kats by Kevin Macleod 

Shaping the World Stroke Campaign 2018

The World Stroke Campaign theme for 2018 is ‘support’.  With such a broad topic we have been working to agree what ‘support’ means to SSO members and to refine the focus of the campaign in 2018. Consultation workshops with SSO representatives across Europe were delivered as part of the programme of the SAFE Annual Conference in Zagreb in December 2017. In these workshops participants were asked to consider three key questions relating to the existing themes identified in the World Stroke Campaign Strategy:

1          Access to support for life after stroke 

2          Support for self-management*

3          Addressing barriers to social integration

Workshop groups were divided into three discussion groups and allocated a topic to discuss and capture key issues and potential solutions for one of the themes.  All participants were then given a number of stars and invited to place these against issues and solutions that had been identified in discussion.

* Participants in workshops disliked the term self-management and preferred the term ‘recovery’, which was more positive, less service oriented and didn’t run the risk of being considered ‘care on the cheap’.

It was acknowledged that recovery didn’t mean a return to pre-stroke condition but achieving the best possible post-stroke outcome characterised by a good quality of life and positive well-being.

Clear cross-cutting issues emerged from the analysis of workshop contributions and discussions made clear that while potential topics could be identified these addressing one could be highly interdependent with addressing another. E.g. effective rehabilitation requires individual motivation, which can be linked to self-worth, which can be linked to access to meaningful activity and social networks. Similarly addressing disability discrimination and stigma is critical to returning to the work.

Rehabilitation and recovery	Rehabilitation for all stroke patients should be guaranteed both shortly after and for the long term with effective transition planning and options for acute to long-term recovery. Even in high resource countries with highly developed healthcare systems rehabilitation is not given a priority and is not accessible to stroke survivors. Rehabilitation and recovery is a lifelong process and maintaining commitment is tough. Motivation is closely linked to effective rehabilitation in the short and long term. Maintaining a recovery focus in chronic phase is helped if services are accessible, signposted and if survivors, caregivers and professionals have hope. Financial barriers to rehab access need to be addressed and rehabilitation should be available in centres and at home. Social rehabilitation isn’t given enough attention, but is important to achieving positive well-being which is critical to physical rehabilitation. Awareness of and engagement in effective self-managed rehab activities is important, but self managed/family supervised rehabilitation can’t be seen as a replacement for core services or ‘care on the cheap’.  Accessibility of potential rehab activities for stroke survivors with physical disabilities and communication difficulties/aphasia.
Psychosocial support	Accessibility of information about support for stroke survivors and caregivers is essential and some may need help to access due to vision and communication difficulties. Can’t assume that everyone has computer skills or a computer – people may need help to find the information they need. Stroke survivors often struggle to adjust to their ‘new normal’. Adjusting to loss and addressing depression and low self-confidence is important. Access to psychological therapies and meaningful activity is helpful. Getting back to work or being useful has a positive impact on self-esteem and well-being. Successful social integration is dependent on the removal of barriers.
Financial issues	Financial barriers to recovery were identified as key issue for stroke survivors and families. Even when healthcare is provided by government or social insurance, care is often only in the acute and post-acute phase and patients ‘fall off a cliff’ 6 wks after discharge with costs having to be met out of pocket. Longer-term health, rehab and home adjustment costs are not always available and it is often unclear who should pay – the individual or the government. Governments need to ensure access to post-stroke care in chronic stage. Social security systems and information about benefits rights need to be available for stroke survivors and families.
Discrimination and stigma	Stroke stigma and disability discrimination was consistently identified as a priority issue for stroke survivors as it created very real barriers to service access and social integration post-stroke. Physical access is just one part of accessibility, stroke survivors need people to understand and find ways to address communication and visual difficulties that they experience. Addressing workplace discrimination was critical to addressing financial and psychosocial issues faced by stroke survivors. Legislation is needed to address discrimination and barriers to access to services, social and cultural opportunities and work. Survivors and families should be informed of their rights and supported to access them. Access to SSOs is essential for providing stroke survivors and care-givers with opportunities to meet and share experiences. Peer to peer communication mitigates some of the impact of stigma and discrimination
Family and friends	Spouses and family members also experience loss and adjustment difficulties after a loved one has a stroke, it is important to recognize their need for psychological and practical support. The impact of stroke and the caring role is often overlooked and needs more attention by primary care providers. Carer’s assessments should be made available. Carer’s health and well-being should be an important consideration for their primary healthcare providers. Caregivers groups are an important source of support in adjusting to a caring role and accessing support and rights.

What do you think?

An online questionnaire has been developed to gather views from SSOs who weren’t represented at the Zagreb. Please share the questionnaire along with the table above to provide some context for the categories and help us to make the World Stroke Day campaign as relevant as it can be to our global audience.

After the survey closes on March 16th, analysis of the questionnaire will be undertaken by the Campaign Working Group and will inform the creative brief that is developed for the campaign in 2017.

For more information about the campaign contact campaigns@world-stroke.org

WSO welcomes new SSO member the Helderberg Stroke Support Group

The Helderberg Stroke Support Group (HSSG) has been involved in assisting stroke

survivors and their families in the Helderberg Basin, South Africa for over 21 years.

The HSSG says that it's important that we use the words "stroke survivor" in preference to the much used words "stroke victim". This is out of respect to the wishes of members of the organisation, who have indicated that they wish to be known as "survivors". 

The main focus of the HSSG is on rehabilitation for stroke survivors and stroke prevention training for home based carers, nursing staff and people interested in assisting stroke survivors in their communities.

The HSSG recognizes that "rehabilitation also encompasses the protection of human rights, equalisation of opportunities and the removal of both attitudinal and architectural barriers. Equalization of opportunities means that health and social services, transport, housing, education, employment opportunities and recreational and sports facilities must be accessible to everyone" (United Nations, 2002). HSSG will endeavour to strive towards the achievement of this goal.   

HSSG highlights that every day in South Africa approximately 360 people have a stroke (Boehringer Ingelheim, n.d.a) and that stroke is one of the leading causes of death and disability in the country. Many stroke survivors are left with permanent physical disabilities and cognitive impairments requiring extended hospitalization, nursing, home care and rehabilitation. 'That is why World Stroke Day on 29 October is so important in raising awareness of stroke and the risk factors for stroke,' says HSSG Chairperson Marian Engelbrecht.

Stroke has taken away so much but given me the gift of helping others

Sas Freeman uses her experience of stroke and recovery to raise awareness of key issues in prevention, treatment and support.

Prior to my stroke I was fit and healthy; I ate healthily, and exercised regularly; I am naturally slim, and did not put on weight – so not someone I believed to be a candidate of stroke. Post stroke, and now having learned all that I have, I know sadly, stroke can strike anyone at any age.

Where to now? AVERT answered an important question, but raised many more

Where to now? AVERT answered an important question, but raised many more

The AVERT trial was a Phase 3 randomised trial with over 2100 subjects designed to end the
controversy about the early mobilisation of stroke patients. It’s sounds intuitive doesn’t it, if a patient has a stroke get them up and moving as soon as possible get the blood flowing and consequently the patient healing faster.

Stroke Recovery and Rehabilitation Roundtable - development, monitoring and reporting - Marion Walker

Stroke Recovery and Rehabilitation Roundtable - development, monitoring and reporting - Marion Walker

Improving the development, monitoring and reporting of stroke rehabilitation research: consensus-based core recommendations from the Stroke Recovery and Rehabilitation Roundtable (SRRR) 

Agreed definitions and a shared vision for new standards in stroke recovery research: The Stroke Recovery and Rehabilitation Roundtable taskforce.

Stroke Recovery and Rehabilitation Roundtable - definitions - Karen Borschmann and Kate Hayward

Common language and definitions were required to develop an agreed framework spanning the four working groups for the The Stroke Recovery and Rehabilitation Roundtable taskforce. 

: translation of basic science, biomarkers of stroke recovery, measurement in clinical trials and intervention development and reporting. 

The Stroke Recovery and Rehabilitation Roundtable (SRRR) was convened with the aim to move rehabilitation research forward. Working collectively across four initial priority areas the #SRRR team reviewed, discussed, and attempted to achieve consensus on key recommendations in each of the areas of translation of basic science, biomarkers of stroke recovery, measurement in clinical trials and intervention development and reporting. 

Stroke Rehabilitation and Recovery Roundtable - Looking at translational/preclincal research in recovery with Dr Dale Corbett PODCAST

SRRR - Translational/Preclincal with Dr Dale Corbett

Stroke recovery research involves distinct biological and clinical targets compared to the study of acute stroke. We know that moving preclinical treatments into the clinical realm has been fraught with notorious difficulties, one very well known area has been of course the incredible disappointments with neuroprotection. In comparison Stroke recovery involves distinct biological principles and a very different time window, in fact is unlike acute stroke at all! 

We spoke to Dr Dale Corbett, from the Faculty of Medicine who was the lead author on the Stroke Rehabilitation and Recovery Roundtable paper on 'Enhancing the alignment of the preclinical and clinical stroke recovery research pipeline'.

Stroke Rehabilitation and Recovery Roundtable - Looking at biomarkers with Dr Lara Boyd PODCAST

SRRR - Biomarkers with Dr Lara Boyd

A biomarker is a naturally occurring molecule, gene, or characteristic that is objectively measured and evaluated as an indicator of normal biological processes, pathogenic processes, or pharmacologic responses to a therapeutic intervention.

Carmen Lahiff-Jenkins. Managing Editor of the International Journal of Stroke spoke to Dr Lara Boyd, physical therapist from the University of British Columbia and the biomarkers group from the Stroke Rehabilitation and Neurorecovery Roundtable.  

To listen to the podcast please click on the title link.

Mrs Neodesha Liyanage from Sri Lanka benefited from regular and coordinated rehabilitation following her stroke

I am Mrs Neodesha Liyanage from Sri Lanka, a 36 year old house wife and mother of a 10 year old son and a 5 year old daughter. My husband is a school teacher. Last year, on September 11th, I got up early in the morning as I had to send my children to Sunday Dhamma school. At 11 am while I was cooking, I felt my mouth was deviating to the left side and I had weakness on the right side of my face. I realized that something abnormal was happening and I called my husband. He took me to the National Hospital with the help of my mother. I was admitted to a medical ward and underwent a CT scan of my brain. It was normal and I was on follow-up observation.

The following morning I noticed weakness of my right arm and right leg. I could not move the right side of my body. Then I tried to tell this to the ward staff but I was speechless. When I tried to drink some water I developed a vigorous cough, which indicated that my swallowing was also affected. Fortunately, I was continent. A second CT scan of my brain was done and it showed a massive left middle cerebral artery infarction (the artery which supplies blood to the middle part of the brain on the left side was blocked by a clot). Hence, a large part of the brain cells were dying, including the area for speech. All my disabilities could be explained by this second CT scan.

I was admitted just with right facial weakness but it ended up a full blown picture of a stroke, which I did not expect at all. I thought I would be going back home soon with medication. I expected a quick recovery from my disabilities. But it was not that quick, as I was not aware of the course of the stroke on human beings. After one week in the medical ward, I was transferred to the stroke unit for long term rehabilitation.

In the stroke unit, I felt comfortable, because the stroke team is more caring. Treatment and rehabilitation were made to run in parallel. The rehabilitation program consisted of three major components. They were physiotherapy, occupational therapy and speech therapy. All three therapies were arranged according to a daily schedule. The outcome of all these therapies and treatments was reviewed every Thursday during the stroke meeting, which was led by the senior consultant neurologist. As I was a young stroke patient, I was investigated extensively.

My main worry was my affected speech which made me so embarrassed. Because I couldn’t follow what others said (affected reception) and at the same time others couldn’t understand what I said (affected expression).

Day by day, my speech, swallowing and other physical disabilities improved. The caregiver was my dearest mother who was with me throughout the hospital stay. She was a courageous woman so I didn’t have any fear after being touched by the stroke. My husband, my two children, my brother and sister were with me giving me the maximum moral support. All my friends and neighbours visited me at hospital.

I left the stroke unit after one month with good swallowing, normal speech and ability to walk without support. Still my right arm is weaker than the right leg. But I am independent in day-to-day activities. Now I attend the stroke clinic and stroke support group meetings monthly, retaining my hope of cooking in the future, which I am so good at. I would like to thank everybody who helped me in my fast recovery. The biggest thanks should go to the senior consultant neurologist, who leads the stroke team successfully

Seven minutes in stroke - Linda Worrall

1. What inspired you towards neuroscience?
I moved addresses to Brisbane, the capital of Queensland, Australia from rural North Queensland in 1977 to decide what university degree to apply for.  I observed a speech pathologist with a person with severe aphasia and have been wanting to help ever since.

2. Why stroke?
I was on a working holiday in the UK when I took up the Research Speech Therapist position at the newly opened Stroke Research Unit in Nottingham. The innovation of the multidisciplinary team led by Dr Nadina Lincoln on the stroke ward was exciting and meaningful. I completed my PhD there from 1984-1987 at an exciting time when the UK stroke and aphasia scene was rich with innovation, leading the world in the organization of stroke services and stroke rehabilitation. 

3. What have been the highs so far?
I loved leading the NHMRC funded Centre for Clinical Research Excellence in Aphasia Rehabilitation from 2009-2014. We have a very strong network of aphasia researchers now in Australia and have the online Australian Aphasia Rehabilitation Pathway. I was also immensely impressed when the Duchess of Bedford came to Brisbane during one of our massive tropical storms to award me the Tavistock Prize for my contribution to aphasia. It was the first time she had awarded it to someone outside of the UK. 

4. What have been the lows?
Stroke patients with aphasia have the worst outcomes, yet they remain marginalised in stroke research, practice and policy. It’s not rocket science to include them.  I don’t like to see the Australian Aphasia Association for people with aphasia and their families struggle for funding and support when larger stroke organizations forget they are there.  I hate that some stroke clinicians still question the value of speech pathology services for people with aphasia and their families despite two positive Cochrane Reviews.  I hate to hear stories of people with aphasia who have been treated very badly in the health system. All health professionals need to step up to the challenge of understanding how language is processed in the brain, how aphasia is not a cognitive, intellectual or memory problem to be afraid of, and how to communicate with someone with aphasia.  

5. How do you balance work life with the needs of home life?
I am finally getting the hang of it after 30 years of academia. Progressing my career, having three young girls, and an academic husband was hard work in the early years. I deliberately expanded my home life through more exercise, more family time, more travel and supporting my home rugby league team, the Broncos.  I don’t work on weekends or nights, but do work hard and strategically during work hours with a great team of aphasia pre-doc and post doc researchers. 

6. Who are your most important mentors and how did you find them?
At the University of Queensland, we had a formal mentoring scheme for women and I was allocated Professor Cindy Gallois, who I have worked with for many years.  I approached Professor Audrey Holland (University of Arizona) during some travel in the USA in 1985 and she focused my thinking on what matters in aphasia research and rehabilitation.  I now have a rich network of aphasia research colleagues from around the world and we mentor each other, usually during a writing retreat alongside an international aphasia conference. We have also turned our attention to mentoring others. 

7. What are your most important collaborations and how have you built them?
I will graduate my 26th PhD student soon and these have been very important collaborators. They form the next generation of aphasia researchers. The CCRE in Aphasia Rehabilitation brought me my “rope team”, Associate Professor Miranda Rose (Latrobe University) and Professor Leanne Togher (University of Sydney), and we are tied together to support each other through the ups and downs of academic life.  During the research capacity building years in speech pathology at The University of Queensland, I was also fortunate to have my old university friend, Professor Louise Hickson in the same department as a collaborator from audiology and this cross fertilization across the disciplines sparked many successful grants and PhD projects. 


Professor Linda Worrall is the Director, of the NHMRC CCRE in Aphasia Rehabilitation and Co-director of the Communication Disability Centre, as well as the Postgraduate Coordinator for the School of Health and Rehabilitation Sciences at the School of Health and Rehabilitation Sciences, The University of Queensland