By Bola & Steph
The EU funded ARISE project provides a unique opportunity for researchers to add to the available capacity necessary to improve the lives of those living with SCD. Stephanie works within the Sickle Cell team at Guy’s and St Thomas Hospital, supporting the coordination of clinical trials. As someone whose family is directly affected by SCD, it is her desire to further establish patient advocacy in the UK with a cohesive voice. She works on creating a project development programme, empowering and supporting the engagement of communities and stakeholders. Bola, an advocate, counsellor and trainer advocates with the Sickle Cell Cohort Research Foundation (SCORE) to support the emerging new-born screening program and improving path way of care in Nigeria. With a background in youth and community health education and project management, she supports patients and families to be active participants in evidence-based health solutions for their own communities.
Both of us, on a voyage of discovery were seconded from GSTT to UIC for three months as early stage researchers linked to Work package 4. Our Primary Objective was to test the feasibility for effective, New-born and early infant screening for SCD in sub-Saharan Africa. Our secondment to UIC provided much insight into the strength of patient advocacy in the USA and the strong relationship between consultant, nurses and their communities. Having knowledge of the way Guys and St Thomas’ Hospital Trust provides care for sickle cell patients and engages with families and communities, we wanted to understudy the UIC approach to the training and use of community health workers to improve SCD health care. The next step would be to apply the best of both to the emerging new born screening program in Nigeria.
We learnt so much about the UIC methods of engagement with the community, policymakers and healthcare providers. We discussed and learnt from the challenges, potential barriers and considered strategies including the application of aspects of Implementation Science methods to support the implementation of a New-born screening programme. We observed some of the activities of the NIH-funded SCD Implementation Consortium, including stakeholder engagement through Advisory Committees and individual advisors.
UIC provided the structure and environment within which to study their approach to the treatment and care of patients living with SCD. We saw how the co-ordinated care system works across all ages, paediatric through to adult services, the transition program and the close working partnerships with community health workers. The project to address the challenges faced by trying to track unaffiliated patients, (patients who have SCD but are not accessing services for a range of socio-economic reasons) was fascinating. One key learning is that you have to be intentional and consistent about the participatory process to engage and retain patients with lifelong diseases. What we saw of the work with patient and community group’s fuelled ideas that led to the draft of a few proposals which we hope can be developed into projects. The next stage is to plan the trip to Nigeria to train community health workers and other stakeholders and share the learning from UIC. Our hope is that this will bring much needed capacity to the SCD new born screening program.
First day meeting with Professor Lewis Hsu and the Department Head of Paedriatics, Professor Van Voorhees . March 2019
We attended a Patient led workshop by those living with SCD on stigma and discrimination at the Foundation for Sickle Cell Research annual symposium in Fort Lauderdale in June 2019.