Tobacco control with Lubna Bhatti for the World Health Organisation

Tobacco control with Lubna Bhatti for the World Health Organisation

Carmen Lahiff-Jenkins spoke to Lubna Bhatti from the World Stroke Organisation 

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 Association of Kenya's exciting plans for World Stroke Day 2017

We spoke with the team at Stroke Association of Kenya about their plans for World Stroke Day 2017. Edward Konzolo - the Organizing Secretary, Florence Nduati- the Treasurer, Prof. Grace Ochodo - the Secretary General, Dr. Evans Nyambega - Chairman and Cornelius Sayi - Administrator.

Tell us about why you are holding a World Stroke Day event? 

There is increasing prevalence of stroke in Kenya, so we want to raise awareness in order for people to mitigate this. Strokes are happening across the country in both rural and urban areas – so this is a challenge and we want to raise awareness across the country. We cannot assume because people live in urban areas that they have more knowledge; many people do not understand the concept of stroke and if they feel unwell many people assume it is malaria or other well-known illnesses that they have awareness of. 

We want to change the situation so that people know what the stroke symptoms are and to know what action to take when they see or experience such symptoms.

Our government are not putting much emphasis on stroke, so we want to change this and to get them to collaborate with us.

We also want to change the way stroke emergency is handled so that we can have standardized emergency response.

Availability of timely, affordable quality medical care and rehabilitation for stroke attacks is also our priority area for change. 

What do you want your World Stroke Day event to achieve? 

In the short term we want to increase awareness of the risk factors and symptoms of stroke, and then what action to take. We aim to screen 1,000 people at our World Stroke Day event and advise them on the action they need to take.

In the long term, by engaging with decision makers now we want to make sure that the Stroke Association of Kenya is included in policy making activities to ensure that the policy environment supports stroke prevention and rehabilitation for survivors.

How are you planning your World Stroke Day event?
We started planning in August by calling many of the non-communicable disease (NCD) players in the country together. This has included Amres Health Africa, Medecins sans Frontieres, Ministry of Health Kenya, Nairobi County Government, African Institute for Health and Development. We have discussed which activity each organization can take the lead on and what equipment they can bring. We hold the meetings every Tuesday to discuss what we want to do on the day, the budget, and roles and responsibilities.

We will screen 1,000 people for blood pressure, BMI and blood sugar. Through this screening we will discuss the risk factors for stroke and the action that should be taken.

We will conduct a street procession so that as many people as possible can see us. We want to be visible. We will also have testimonies by survivors and care givers in order to ensure that the voices of stroke survivors are heard and so that the human face of stroke is seen. We will distribute flyers about stroke so that people have something to take home to keep and to refer to. We will have an award ceremony for stroke friendly organisations. This is to encourage employers to treat stroke survivors with respect and dignity. We what to promote the view that  stroke does not have to be the end of employment; as many stroke survivors and their families are pushed into poverty when they are laid off from work and cannot find employment.

We will distribute assistance devices to those who need them as we recognise that many people have very practical needs and we want to support peoples’ quality of life. Also to be distributed is equipment to enhance economic empowerment for survivors who are able to use them, such as welding and sewing machines. 

We are already doing media interviews on radio and television in the run up to World Stroke Day. We recognise the need to promote our activity as far as we can using communication channels. In Kenya community radio is really accessible and popular so we know that we can reach many people this way. We are also using social media platforms in order to reach as many people as possible.

What resources do you have to help you deliver the World Stroke Day event?
We have mobilised a lot of volunteers through the universities in Nairobi. We have the involvement of public health students from Kenyatta University and volunteers from Kenya Medical training college. We have also engaged community health volunteers who are in every village. Stroke survivors, who are our members, have also appeared on various media platforms for purposes of sharing their experiences. 

Our major challenge is funding, not just for World Stroke Day but for the functioning of the Stroke Association of Kenya, so continuing any work is a major challenge. We are appealing for financial help and we are applying for grants in order to ensure the proper realisation of our goals. We are fortunate that our partners are supporting the budget for World Stroke Day.

The other organisations that are collaborating with us are providing materials to help with the campaign event. Each collaborator brings something according to its own specialisation. The Ministry of Health is supporting the printing of leaflets. Volunteers will assist in the screening and data collection.

How do you ensure that you learn from and build on World Stroke Day events?

This will be the third World Stroke Day event that we have run. Each year there are new challenges including securing funding, attracting volunteers, getting survivors from where they live to the event activity. However our partners have increased and this gives us the additional support that we need. We also recognise that we cannot just be in the city centre, we need to get out to the suburbs. 

The stroke award for a friendly organization is something new and we hope to have this as an annual event so that organizations will be able to compete for this.

We shall have a data collection and a monitoring tool which will be filled in with details of everyone screened. This will inform our final evaluation report which will be compiled after the event. People enquiring about our activities continue to call in during and after media appearances and this is an indication of the impact of our activities. Membership will also increase as more survivors will come out to register as has been in the past. We hope to find partners to continue assisting our programs because they will get to know of our existence and learn more of what we are engaged in. The Government has been of immense assistance in terms of human resources and we hope to get more assistance for our programs in terms of funding. There is already increased partner interest and we hope to get more partners to know and support our activities. 

Follow Stroke Association on twitter @saokenya1 

My reason for preventing stroke? Knowing it can happen to anyone if you don't take care of yourself

My reason for preventing stroke by Nenad Nikolić - I am 35 years old and have seen people younger than me who have had stroke - we all need to take all stroke risk seriously!

My name is Nenad Nikolić. I want to share my personal reason for preventing stroke.

My mom suffered a sudden stroke in 2008, when she was age 49. I remember it was Friday 6th June, we were watching TV, when she suddenly lay down in bed, and couldn't get up, and started to talk some unrecognisable words. We tried to put her in a seated position , but she couldn’t do it. Luckily i work in hospital in a Neurology department in my town, so I recognised stroke symptoms quickly and reacted immediately.

As a survivor and a clinician I know that strokes can be prevented

Alexander Kortsiaris is President of HAS - the Greek Stroke Association, here he shares his experience of stroke and highlights the benefits of annual health checks and following a Mediterranean diet.

My reason for preventing stroke? We are born to be happy!

I’m Madalena Viana from Portugal and unfortunately I have in my care, two very close family members that are stroke victims.

The first one was my husband, Manuel Viana, in 2007, who was 60 years old when he suffered a haemorrhagic stroke.

My reason for preventing stroke? My family of course. Everything else can be replaced.

Ifigenia Tsolakidou is a stroke survivor and member of HAS - the Greek Stroke Association. Here she describes how life has changed since stroke and the steps she takes to reduce her risk and that of her family.

Stroke doesn't choose ages, races or religion - it can happen to anyone.

António Célio Ramos is 43 years old and key-account manager of a large national beverage company. He also cares for stroke survivor Diana Wong Ramos, his wife and is a member of the Portuguese Stroke Association.

My reason for preventing stroke? Spending an hour a day to take care of your health could prevent years of disease.

Jasmine Cvetkoska is 49 and from Ohrid  Macedonia. Surviving heart surgery didn't slow her down, but not recognising the risk factors of stroke that came with her condition contributed to a life changing stroke. Here she describes the impact on her life and why we should all slow down and take better care of ourselves.

My reason for preventing stroke? We could use the money we spend on stroke to improve our community

Margret G Sigurdardottir from Iceland is a carer. Since her husband's stroke she has worked to inform herself and others of the importance of stroke prevention.

Before the stroke did you have any idea that your loved one was at risk of stroke?

My husband had a stroke twelve years ago and was completely paralyzed on the right side. I had no idea before this shock, that he was in any risk category.

When and how did you realise that your husband was having a stroke?

When he was going to swim one morning, he did not fell well and he thought he had a flu. But I noticed that he was not normal and I saw that he was all pink and the sweat popped from him, then I called the emergency line.

Can you tell us a bit about your lives before and after stroke?

We have lived together for more than 20 years and we have one son. I myself are in good health. I am in permanent employment, a deputy head of a large transport company and he in the public sector.  We are financially secure, but the stroke came like a thunderstorm, but fortunately, it did not hurt our family life very much.

Since my husband's stroke, I have studied better the risk factors of stroke for myself, following my experience of my husband and warning others of risks.

What steps do you take now to prevent stroke? How are you working to reduce your specific risks?

I have set my boundaries to raise more awareness of my colleagues and partners on the risk of stroke.

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

You can replace almost all organs throughout your body, but there is nothing you can do if your brain collapses!

What is your main reason for raising awareness of stroke prevention?

Major consequences of stroke in the community.  Save money so they can be used to those who need them most!

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.