The South London Cardiac Operational Delivery Network (ODN) commissioned Mabadiliko to deliver a study to understand perceptions of heart valve disease and transcatheter aortic valve implantation (TAVI) in Black African and Caribbean communities in South East London.
Background
Through national benchmarking of TAVI intervention rates, we identified significant variation in access to TAVI in parts of South East London. When reviewing demographic factors we calculated the TAVI intervention rate in the White population is eight times higher than in the Black population, even when controlling for other factors such as age.
Action
To understand this, we commissioned Mabadiliko CIC to undertake extensive community engagement with Black African and Caribbean people living in South East London to better understand attitudes and awareness of heart valve disease as well as barriers to care. Our report, Addressing inequalities in heart valve disease, provides insight and recommendations on what we can do, including the need for our healthcare system to sensitively consider ethnicity, lifestyle and environment of patients – treating each patient as a holistic person.
Outcomes
Twenty key themes emerged across seven constructs, demonstrating both opportunities for change and challenges faced. These include levels of trust with NHS services, specific perceptions of healthcare professionals and the system as a whole, opportunity costs and decision making. Recommendations are included and are organised in three broad categories: individual and community factors; relationships with healthcare providers; and relationships across wider health services.
Next steps
It is clear to us that these lessons and recommendations have broader relevance reaching far beyond cardiac services and we have reached out to ICB and London medical directors to understand how we can share and consolidate our learnings.
To take forward the recommendations relating to valve disease, we have established a Valve Inequity Steering Group, led by Professor Phil MacCarthy. The group is currently focussed on phase 2 of the pilot; establishing community based diagnostic clinics, based in GP practices in Lewisham. We are preparing to launch in April at the Waldron Health Centre (North Lewisham PCN) and have capacity to extend this across the Borough and will work with the ICB and PCN health inequity fellows to achieve this. Alongside this, to build further understanding in this area the group is reviewing data on aortic valve disease to understand racial and gender-based differences in presenting symptoms and outcomes, with the aim of using these learnings to develop guidance for clinicians to improve detection, diagnosis and management.
Key contributors
- Dr Nadine Fontaine-Palmer, Hillna Fontaine, Natalia Le Gal, Mabadiliko CIC
- Kate Jones, Deputy Director, South London Office of Specialised Services
- Bethan O’Donnell, Project Manager, South London Cardiovascular Networks
- Andrea Marlow, Business Development Manager, South London Office of Specialised Services and South London Cardiovascular Networks
- Valued South East London study participants