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David Ramsden on why our fight for a Life Unlimited must be for all people with CF 

Chief Executive of the Cystic Fibrosis Trust, David Ramsden, writes about how the Trust is working to support people with CF from black, Asian and minority ethnic groups and why we want to do it better.

I have often encountered the misconception that cystic fibrosis (CF) only affects white people. It doesn’t, and in fact over 400 people on the UK CF Registry are from black, Asian and minority ethnic (BAME) groups, 4% of the UK CF population.

The Cystic Fibrosis Trust is committed to supporting all people with cystic fibrosis, however, the focus on racial injustice following the recent killing of George Floyd in the US by white police officers, and the protests around the world, demand that we reflect on and renew our efforts.

This issue impacts across our society, from how services are run and funded, to the preconceptions we may have when seeing someone different to ourselves. It is a hard truth that the charity sector is no exception to this, as recently documented by the campaign group, Charity So White.

Over the past year, this has been an increasing focus for me and my team at the Cystic Fibrosis Trust. We know that in the past we have not sufficiently, or appropriately represented and supported people affected by CF from BAME groups, through our work.

Last year, we received funding from the organisation Breaking Down Barriers, to improve our understanding of the needs and experiences of people with CF from BAME backgrounds, to ensure that the information and support we provide is accessible and representative for all. We have convened a group of clinicians who are supporting this project, and who met again this week to progress the work.

Under the guidance of Breaking Down Barriers, we are looking to develop best practice in how we do this and first must understand who we are currently reaching. We know that people from BAME backgrounds experience social and health inequalities, which has been highlighted further by the disproportionate impact of COVID-19 on the wider BAME population. We need to understand this more and as a starting point we are reviewing data from the UK CF Registry against our own data relating to the ethnicity of those who access our welfare grants. To further our understanding, we will be collecting ethnicity data across more of our work, including our youth work and support provision, to ensure that our offering is truly reaching all people.

Recently, we have worked with people with CF from BAME groups to share their personal stories in national media and podcasts – but we want to do more and I know the team would love to hear from you if you want to talk to us about your own experiences.

I know that if we are to tackle racism, the Trust also needs to look at our internal practices. As a fundamental part of our fight for a Life Unlimited for all people with cystic fibrosis, the Trust recognises that everyone has a right to equal opportunity and a contribution to make within our society. We are committed to eliminating discrimination and promoting equality and diversity for people of all ages, abilities, cultures and communities among our workforce. Our aim is that our workforce, both staff and volunteers, will be representative of all sections of society and all feel respected and able to give of their best and achieve their potential. The Trust is open to individuals from all groups in society and will seek to increase recruitment from currently under-represented groups to ensure we maximise the contribution of volunteers and staff.

Inside the Trust, a dedicated group of staff is looking at how we ensure we are a diverse and anti-racist place to work. This group takes an important role in holding the organisation to account and pushing us all to do more in all areas of our work.

However, I know that the responsibility ultimately rests with the leaders, such as myself. I know the whole Trust team is committed to tackling racism, which means being actively anti-racist to tackle racial inequalities in our society.

By doing this we believe we can truly support a Life Unlimited for everyone with cystic fibrosis in the UK.