By Nasara and Larai
Thanks to the staff exchange programme set up by the ARISE project, Nasara and I had the opportunity to meet.
Nasara is a teacher and proprietor of PANAF Schools in Kaduna (Nigeria) and is seconded to the University College London (UCL, UK). On my side, I have 16 years experience working with the Kaduna State House of Assembly (Nigeria) which is responsible for making, amending and repealing laws and I’m seconded to Guys and St Thomas Trust (GSTT, UK). We are both early stage researchers at ARISE, working on different work packages which include e-learning, counselling, implementation science, communication and dissemination.
After a series of rescheduling, we finally got the chance to meet the amazing Jamili Miah and Robyn OLoughlin who are both Project Leads – NHS Sickle and Thalassaemia Screening Program at the Public Health England (PHE). The training was aimed at going through a suite of resources, such as parent information leaflets, programme handbook and standards, e-learning, demonstrating the newborn outcome system and discussing how the PHE does outreach and engagement work through the societies (Sickle Cell Society and UK Thalassaemia Society).
After sharing some personal stories to buttress our views, we realized we had spent more time than planned as the training was semi formal but very effective.
We learned that research takes a long time, therefore it is important to have regular stakeholder engagement, this is because stakeholders can change during the period of the research. Also, it is important to identify patients as stakeholders and ensure that all communication materials produced must be made available for discussion and acceptability to focus groups made up of the end users to establish compliance to need, culture, etc. without loosing content.
Thanks to this training opportunity, we saw the possibility of linking the Newborn Screening to antenatal routine checks. We learned and tried to proffer solutions to the major difference between Sickle cell education in the UK and Nigeria as it affects culture, religion and social issues and the challenges that this could pose. Also, we discovered that Sickle cell disease can be taught by explaining usual and unusual gene with colourful diagrams and we had a better understanding of coordinating Newborn Screening in terms of protocol management, from diagnostics to management of patients through the National Haemoglobinopathy Register (NHR).
We left the training very satisfied having made new friends with a promise to keep in touch and update our tutors as we go along with our projects.