Wang Jing - World Stroke Day 2015 'Best Campaign in a Low or Middle Income Country' Award

1. What inspires you to advocate for stroke education?
China has entered the aging society. The number of potential stroke patients are becoming huge and up to millions. The rapid economic development in china has brought the big changes in peoples’ lifestyles, habits. However, because of the lack of health education, a lot of Chinese people do not have the awareness of stroke prevention and the right emergency treatment after stroke. All these cause the high rate of stroke incidence, mortality and recurrence.
Under this serious situation, CSA has recognized that only committing to the stroke education, it can help the people to improve stroke prevention awareness and ability, reduce morbidity in patients after treatment delay phenomenon occurs, so as to improve the success rate of treatment for the patients, reduce the loss and harm to society and family.

2. What does stroke care look like in your country?
The Chinese government pays much attention to the stroke prevention and care. A project of “High risk of non-disability of ischemic cerebrovascular events” (HR-NICE) proposed by CSA has been brought into the national science and technology development plan.
The stroke high risk group screening has started in some areas in China, but the stroke prevention education, pre hospital first aid, hospital green corridor construction work are still in the initial stage.
Because China is the largest developing country in the world, there are the big differences of economy and culture development among the local regions. The medical level in many areas is not ideal, stroke prevention education has not got the attention it deserves, the people's awareness of stroke is still blank.

3. What element of stroke care are you most proud of?
Proposed by CSA, HR-NIC project has been included into the national science and technology development plan and already started related works on clinical research, training, public and patients education as well as has established patient self-test and emergency call mobile platform.
Initiated by CSA, a Red Bracelet Volunteers Service Corps was established in year 2015 and has recruited over 10,000 volunteers within half a year. Instructed by CSA, the service corps have made the activity plans, regularly carry out activities.  We can say CSA provides a platform and incentive system, to motivate the enthusiasm and the capability of the Chinese stroke physicians to devote into the public science education.

4. What have been the highs so far?
CSA was founded just over a year with more than 12000 members and eight academic branches.  Hundreds of various academic exchanges, training courses were held all over the county. Nearly 20,000 doctors have participated in the these meetings and training, in which 12000 doctors focus in the CSA first academic annual meeting and have made an important contribution to promote academic progress.

We have launched an eLearning portal named “China Academy of Stroke” which has provided an online platform for the medical professionals to get continue learning and education as well as for the late-breaking medical information sharing.
We have formulated the “Chinese Stroke Center Construction Guide” and established the "China Stroke Center Alliance". More than 1300 hospitals have joined and begun continually to report the disease information of the stroke patients to CSA data center.
Having cooperated with the domestic scientific research institutions CSA has begun working on several scientific research projects, and has supported dozens of outstanding young researchers on the skills training, research funding and etc., in which part of the funds come from the Chinese government.
We also have some journals to be published which include: Chinese 2 academic journals, 1 English journals and 1 popular science periodical.

5. What have been the lows?
Since CSA has founded only one year, we are still being on the initial stage and need to learn more from the outstanding and experienced international organizations to formulate effective and national stroke prevention and control strategy and implementation measures under the current condition of China. We also need the manpower and material support especially in the underdeveloped areas to carry out the training for the professionals, and the popular science work.

6. What is your greatest hope for stroke survivors?
We are expecting more financial support for the stroke survivors from the national health insurance and commercial insurance. Medical rehabilitation is yet to be popular in China, We hope more patients can receive the professional rehabilitation training.

7. What were the major elements of your stroke campaign?
Government:  the support from the government departments enable the activities to be carried out smoothly in the country.
Hospital and physician: the importance of stroke prevention is becoming the common view in the hospitals and doctors, so that many regional hospitals have made the contribution on the manpower and finance in the activities.
Media: great support from the national, provincial and municipal TV stations, as well as the newspapers, websites, radio broadcasting. These reports have been spreading fast all over the country.
Variety of activities:  including putting up the posters, display rack, giving out popular data, complimentary popular science books, open health lectures in the public place, science video playback, clinic and health consultation, risk factor screening etc.
The campaigns have involved nearly 1000 hospitals and more than 10000 volunteers. Have organized approx 1000 stroke education activities, issued nearly 400 thousand copies of books and handouts; millions of people have got the information of stroke via TV, broadcasting, newspapers and internet.

Seven minutes in stroke- Rita Melifonwu

Rita Melifonwu is the founder of the Stroke Action UK and Stroke Action Nigeria, she is the UK Department of Health Mary Seacole Scholar and the secretary of the Nigeria Stroke Reference Group. We congratulate Ms Melifonwu for being awarded the World Stroke Day 2015 ' Individual Achievement Award', from the World Stroke Organisation. 

What inspires you to advocate for stroke education?

In 1998 I was employed as a new senior nursing sister at my local hospital within the London region. The Sisters Forum was dynamic in lobbying for Consultant based wards to maximize the patient care milieu. My ward had two Consultant Endocrinologist with specialist interests, one diabetes, the other Hypertension. I soon realized that when a patient is admitted with a stroke to accident and emergency they were allocated to my ward Consultant Physicians because they were also diagnosed with either diabetes or hypertension, or both. Furthermore, the stroke survivors were quite often of a black and minority ethnic background and both themselves and their families had little or no understanding about strokes.

Suddenly, my ward was filled with stroke patients. There was no stroke unit in the hospital, and, the nurse training we received did not quite prepare us to provide such specialist care. I also realized that there is a strong family history of strokes and stroke risk factors in my family in Nigeria. I quickly became aware of key stroke risk factors and the apparent lack of stroke awareness at the time not only in the UK but also in Nigeria. So I decided to take pragmatic action to become a strategic stroke advocate, taking the 1999 Department of Health’s (DH) Mary Seacole Nursing Leadership Award in my stride, and, establishing Stroke Action in UK (SAUK).

 What does stroke care look like in your country?

In Nigeria, stroke is said to affect 168,000 people annually although this is an estimate since we do not have effective stroke registry to capture national incidence data on stroke. No one has adequate information about the prevalence or economic and social ramifications of this NCD in Nigeria. There is an URGENT need for valid evidence of the prevalence of stroke in Nigeria. A stroke registry will address this.

Despite the increasing incidence of strokes in Nigeria there are only 5 small stroke units (notably in Benin City, Ile Ife, Ibadan, Enugu and Illorin). These are not sufficiently equipped; have over stretched MDT, and lack of adequate stroke education for healthcare professionals. The cost of caring for a stroke patient is prohibitive and this may lead to compromised diagnosis, management and outcome. Funding from sources such as private industries, NHIS and international organizations would need to be explored in addition to increased government spending. In addition, there is still a lack of general public awareness of what stroke is, its causes and management. Most people still refer to stroke as the effects of witch craft, evil spirit or an arrow from God.

In 2012 however, Stroke Action Nigeria (SAN) launched a Stroke Support Toolkit based on the WSO model and trained 28 Volunteer Stroke Ambassadors (professionals, stroke survivors, carers) to establish stroke support groups across eight states (Abuja FCT, Anambra, Benue, Delta, Edo, Imo, Lagos, Ogun). The Stroke Ambassadors are doing the best they can to provide hospital befriending for survivors and community stroke awareness outreach without any funding.

Furthermore, in 2013, SAN signed an important Memorandum of Understanding (MOU) with the Federal Ministry of Health (FMOH) to collaborate in mitigating strokes and developing quality stroke care in the country. In 2015, Stroke Action formed an alliance with the Medical Association of Nigerians Across Great Britain (MANSAG) to collaborate with pushing the MOU implementation.  As a result of this, the Nigeria Stroke Reference Group (NSRG) was inaugurated on 15th September 2015 by Mr Linus Awute, Permanent Secretary FMOH on behalf of His Excellency, President Muhammadu Buhari. The NSRG is made up of experts in Nigeria and in the Diaspora, stroke survivors, carers, as well as key stakeholders in the prevention and management of stroke and its effects. The MOU between the FMOH and SAN; and the partnership between MANSAG and Stroke Action were the key events leading to the formation of the NSRG. The principal objectives of the NSRG are:

What element of stroke care are you most proud of?

For me, I believe that ‘prevention’ is better than cure and that ‘health is wealth’. What the stroke survivors tell us is that ‘frankly having had a stroke, they don’t want to have another one’. Our stroke advice clinic helps us to support stroke survivors in preventing re-current strokes. In SAUK and SAN, we invest significant amount of time and resources on our ‘Community and Faith Groups’ stroke awareness outreach, which involves stroke and FAST awareness and BP stations. This approach has progressed into our fun filled annual ‘Power to Stop Strokes Campaign’ during the stroke months involving stakeholder conferences (‘Action on Strokes’ in UK, and, ‘Stroke Assembly’ in Nigeria), and a walk and run against strokes to promote physical activity. We are thankful to the departments of Public Health and NCD that collaborate to make this happen.

It is refreshing to observe the progress that stroke survivors make in our Life After Stroke Centre and stroke support groups as they gain confidence to become socially re-integrated in their own communities, re-gain life roles, ability and function. Most exciting is our Volunteer Stroke Ambassadors’ development program that promotes ‘peer-led’ activities including befriending, exercise class, holiday clubs and returning back to work life. I am so proud of the progress that has been made in acute stroke management in recent years resulting in stroke patients recovering better and less stress and burden for carers.

What have been the highs so far?

When I was a senior nursing sister, I went to the UK Stroke Association to see the Chief Executive, Margaret Goose, for advice on where I can get a decent stroke nurse training. She said, “Rita, you are the type of nurse we are looking for and we are going to support you”. I received prompt sponsorship as part of the first tranche of stroke nurses trained at the Liverpool Metropolitan University in 2002 where I gained an advanced diploma in stroke care. Sustaining Stroke Action was my course project and look where we are today. We even won the DH’s Health and Social Care Volunteering Fund Team recognition for our Stroke Ambassadors’ Development program in 2015: https://www.youtube.com/watch?v=yhzGfGkSmQw

We are thankful to Prof. Anthony Rudd, the NHS England’s National Clinical Director for Stroke who spoke at our conferences in Enfield, at the onset, and, having seen and spoken to the stroke survivors and carers gave us the encouragement that we are proceeding in the right direction. This gave us the impetus to advocate for the Enfield Stroke Pathway, and lobby several Enfield Mayor’s and MP to become our Stroke Champions. We have not looked back!

The formation of the NSRG in collaboration with MANSAG and the FMOH is the culmination of the highs we celebrate and a key development in the fight against strokes in Nigeria.

 What have been the lows?

For years one of the outcomes we are proud of is that stroke survivors that come to Stroke Action do not have re – current strokes. Most recently however, we have seen a different kind of challenge as some stroke survivors progress to having vascular dementia resulting in so much stress for the carer, un-anticipated hospitalization, institutionalization to care homes, and, unfortunately for some, untimely death. Coping with life after a stroke is hard for the carer but dementia compounds the problem for them. This is a low we are all learning how to cope with.

What is your greatest hope for stroke survivors?

A day when every stroke patient will have the opportunity to receive tPA at the appropriate time window and be cared for in an organized stroke unit and by specialist multi-disciplinary stroke teams within the acute and community settings. I will also look forward to celebrating when stroke survivors and their carers will have access to local ‘Life After Stroke Centers’ sufficiently equipped and resourced to support their stroke recovery journeys.

Above all, I hope for a world where every citizen is Stroke and FAST aware and there will be a significant global reduction in stroke incidence.

What were the major elements of your stroke campaign?

Collaboration and partnerships make our annual ‘Power to Stop Strokes Campaigns’ hugely successful. We have the opportunity to innovatively engage and work jointly with key Trustees: Dr Theva Nathan – Consultant in Stroke Medicine, Cllr Anne Marie Pearce – Former Mayor of Enfield and vice chair of the Health Scrutiny Panel, Dr Ogo Okoye – Public Health Consultant, Dr Biodun Ogungbo – Consultant Neurosurgeon and NN’emeka Maduegbuna – Chairman and CEO of C&F Porter Novelli in Nigeria which provides all our media publicity pro bono. We also partner with statutory and non-statutory agencies, stroke survivors and carers to achieve a common goal – ‘stroke advocacy and awareness’. Our joint working with Enfield Council and Public Health in UK, MANSAG in UK and Nigeria, the Police Force and FMOH in Nigeria helped Stroke Action to achieve a milestone in the last year. For WSD 2015, we supported female stroke survivors to promote the WSC theme ‘I am Woman, Stroke Affects Me’ with excellent outcomes. SAN also launched the first ever Stroke Handbook for Nigeria.

We are now looking for sponsorship to translate it into several indigenous languages

Seven Minutes in Stroke - Claus Ziegler Simonsen

This week we asked Claus Ziegler Simonsen to share seven minutes in stroke with us. The idea behind the 'Seven Minutes in Stroke' series is to help build a stroke community of early career researchers, who can learn about each other, share what they're working on, potential collaborations and to advance science. Thank you to everyone who has contributed so far!

1. What inspired you towards neuroscience?

My answer is ordinary, but true. It was Oliver Sacks' book "The Man Who Mistook His Wife for a Hat."

2. Why stroke?

The combination of interesting neurological deficits, estimating the location, getting the result (by scanning), treating and often seeing that the treatment benefits the patient. And all this often occurring in a very short time span.

3. What have been the highs so far?

In medical school I did a research year where I was part of a team who developed a stroke model in the pig. We performed one of the first diffusion weighted scans at our hospital. (Just one image slice.) Seeing the stroke and realizing that the model worked was very exciting. Another high was when endovascular treatment became evidence based. What many felt was the right thing to do, was now proven.

4. What have been the lows?

When we can't help a patient.

5. How do you balance work life with the needs of home life?

By working when the kids are asleep.

6. Who are your most important mentors and how did you find them?

Grethe Andersen (Aarhus University Hospital), who is my mentor and closest work colleague. Leif Østergaard (Aarhus University Hospital), who introduced me to MRI and who was my supervisor at my PhD. Jonathan Rosand (Massachusetts General Hospital), who gave me the opportunity to work in Boston. Albert J. Yoo (Texas Stroke Institute), who taught me a lot about thrombectomy and imaging. All found by coincidence and luck.

7. What are your most important collaborations and how have you built them?

Thabele Leslie-Mazwi (Massachusetts General Hospital) and Ronil V. Chandra (Monash University). Built on common interest and friendship.