In a groundbreaking initiative that has revolutionized the care and management of individuals with Spina Bifida in Nigeria, the Festus Fajemilo Foundation (FFF) has partnered with Shine UK to fill a critical gap in the nation’s public health system. Since 2016, this collaboration has spearheaded the establishment of standalone continence care and management services in key regions, providing life-changing support to babies, children, and young adults who suffer from bladder and bowel incontinence—a condition they are likely to live with for their entire lives.
The partnership was birthed from a Commonwealth Professional Fellowship Program in the UK in 2015, where three FFF staff members gained insight into advanced continence care practices. Realizing the absence of such specialized clinics in Nigeria, the foundation teamed up with Shine UK to replicate and adapt the model for the Nigerian context.
Aiming for Change: The Mission and Vision
The primary goal of this initiative is simple but ambitious: to enhance the skills, knowledge, and capacity of health workers in Nigeria to deliver quality continence care. By doing so, FFF hopes to drastically improve the life chances and futures of children and young adults with Spina Bifida.
Through training programs, resource provision, and the establishment of dedicated clinics, the project has already begun to bridge the gap in care, empowering families and reducing the stigma associated with incontinence.
The project is currently funded under the UK Department of Health and Social Care’s Global Health Workforce Program (GHWP), which works to strengthen health systems in developing countries, advancing progress toward universal health coverage.
Ambitious Goals and Achievements
The scope of the initiative is vast, with clearly defined targets:
- Improved Access: 250 babies, children, and young adults now have access to high-quality continence care through clinics and outreach services.
- Training Healthcare Workers: 89 nurses have been trained in disability-inclusive continence care and management, transforming how health practitioners address this critical issue.
- Expanded Services: Eight public health facilities across five of Nigeria’s six regions have established regular continence care clinics.
The Role of Partner Health Facilities
The project has been implemented in collaboration with eight major health institutions:
- Lagos University Teaching Hospital (LUTH)
- Obafemi Awolowo University Teaching Hospital Complex (OAUTH)
- University College Hospital (UCH), Ibadan
- University of Abuja Teaching Hospital
- University of Benin Teaching Hospital
- Rivers State University Teaching Hospital
- Usman Danfodio University Teaching Hospital
- Federal Medical Centre (FMC), Umuahia
These facilities now offer specialized continence care services, ensuring that individuals with Spina Bifida have access to trained health practitioners and essential resources.
Key Milestones
The project’s achievements are nothing short of transformative:
- Training and Knowledge Sharing: 89 health facility staff and community health workers have received hands-on training, equipping them to deliver comprehensive continence care.
- Supply of Essential Equipment: Clinics have been regularly stocked with free continence equipment and kits, ensuring uninterrupted care for patients.
- Government Approval of Oxybutynin: The Nigerian government has approved the importation of Oxybutynin, a critical medication for improving bladder health.
- Impact on Lives: Over 240 children with Spina Bifida have been reached, experiencing improved health, self-esteem, and quality of life.
- Networking and Peer Support: A network of nurses from eight health facilities and six target communities now has access to specialist advice and peer support, creating a community of practice for continence care.
- Data-Driven Success: Clinics have adopted data collection processes to measure outcomes, ensuring continuous improvement.
A Story of Triumph: Lawal’s Journey to Hope
Lawal’s story is one of resilience, determination, and the power of specialized care. At just 12 years old, Lawal’s bladder capacity was alarmingly low—half the expected volume for his age. The pressure on his bladder posed a significant threat to his kidneys. Without leakage to relieve the pressure, his condition could have led to life-threatening complications.
In 2017, Lawal was introduced to a rigorous continence management program. Trained by local nurses, he learned to increase his clean intermittent catheterization (CIC) from once a day to five times daily. He also began daily bowel washouts to prevent constipation and started using Oxybutynin to relax his bladder muscles, reducing pressure and safeguarding his kidneys.
Fast forward to 2024, Lawal’s bladder capacity is now comparable to that of a healthy adult. Although a temporary shortage of Oxybutynin posed a setback, the quick restocking of the medication—thanks to the Federal Ministry of Health and Social Welfare—ensured he remained on track. Today, Lawal is a healthy, confident young man with ambitious plans to travel and pursue his dreams.
“The difference this program has made in my life is unimaginable,” says Lawal. “Seven years ago, I never thought I’d be able to dream of a future like this.”
The Road Ahead
While the initiative has made remarkable progress, the journey is far from over. FFF continues to push for wider adoption of continence care across Nigeria’s healthcare system, advocating for increased funding, policy support, and public awareness. The foundation also aims to expand its reach, bringing the life-changing benefits of continence care to even more individuals living with Spina Bifida.
A Call to Action
The success of this initiative is a testament to the power of collaboration, innovation, and persistence. It underscores the importance of addressing overlooked health challenges and ensuring that no one is left behind.
As Nigeria works toward universal health coverage, the Festus Fajemilo Foundation’s continence care program serves as a shining example of what can be achieved when organizations, governments, and communities come together for a common cause.
For Lawal and the hundreds of children like him, this initiative has been nothing short of a lifeline—a beacon of hope illuminating a brighter, healthier future.
