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