Cystic Fibrosis Trust (CF Trust) developed a project to help improve their own understanding of the needs of individuals and families affected by Cystic Fibrosis (CF) from minority ethnic backgrounds. Previous research conducted by the CF Trust in 2010/11 suggested that South Asian families with CF face several barriers, including lack of understanding/awareness of CF in their communities – resulting in isolation, stigma associated with having a genetic condition and the perception that CF is thought to be a condition that only affects white people. Evidence also suggests that people with CF from South Asian communities may experience worse health outcomes.
The CF Trust received funding from BDB to deliver the following:
- Launched an internal Diversity Strategy Group and implemented a Diversity & Inclusion Strategy. This was supported by senior leadership and has been taken forward as a key part of their updated organisational strategy
- Created & shared proactive social media posts for a range of festivals, including bespoke graphics
- Secured key media pieces including a slot with BBC Asian Network, featuring people with CF from diverse backgrounds sharing their experiences
- Launched a clinical working group of engaged clinicians – initial scoping meetings held to identify key issues/challenges and to analyse data
- Ensured ethnicity data was published in their annual registry report for the first time
- Gathered ethnicity data for support services which could be examined against registry population data to understand their reach
- Translated Patient Reported Experience Measures (PREM) survey into appropriate languages and provided translation services to help people complete the survey over the phone
- Developed a Diversity Monitoring Form where data is compared to the UK CF population
- Developed an inclusive festive fundraising booklet in place of their usual Christmas fundraising resource – included recipes for Diwali, Christmas & Hannukah (sent to 8500 families)
‘The impact of this project and the support, training and encouragement from Breaking Down Barriers, has been significant for the organisation as a whole, and has strong support from our senior leadership.
We have been able to thoroughly challenge previously held assumptions that CF is a condition which only affects people from white backgrounds. We have also started to better represent people from BAME backgrounds – we have taken proactive action to better engage with diverse groups, and in turn we are finding more people with CF from BAME backgrounds coming to us to share their experiences.
The changes we have made to the PREM survey are directly due to Breaking Down Barriers support and encouragement, and the learning from this will inform future survey development.’ CF Trust
You can find out more about the work of the Cystic Fibrosis Trust via their website: