The title of Day 1 was ‘Exploring diverse experiences within the rare disease community’ and was focussed around understanding diverse experiences and helping people to frame discussions about diversity and ethnicity. We started by sharing the learning from BDB and the importance of language and challenging assumptions and the reasons why diversity is so important. Findacure delivered a wonderful presentation about privilege and what this means and then we divided into breakout groups to discuss this in more detail. The day finished with two excellent speakers sharing their own personal experiences.
Kez Hayat spoke about receiving a diagnosis of Alstrom Syndrome for his son and the importance of receiving genetic counselling and support for the whole family. He talked about his experience as a trustee of Alstrom Syndrome UK and an advisory group member for BDB. Kez demonstrated the important role that patient organisations play and how developing supportive and inclusive services can have a positive impact on the experiences of individuals and families affected by genetic conditions. Kez finished his talk by sharing information about his role as Head of Equality, Diversity and Inclusion at Bradford Teaching Hospitals and some of the challenges the local community are experiencing due to Covid-19.
Ola Fagbohun spoke about her experience of being diagnosed with a Desmoid Tumour. She talked about the support she provides to other Desmoid patients in the UK and the instrumental work she has done in terms of research and quality of life studies. Ola is passionate about improving equality and diversity and promoting the need for inclusive working practices. Ola finished her presentation with a very important message – ‘Open the door so that people can walk in’
Day 2 was ‘Improving Outreach and Engagement’ and we discussed the practical steps organisations can take to improve engagement with diverse communities. We had two insightful talks from the Muslim and Jewish Chaplains from Great Ormond Street Hospital and they talked us through the support they offer to families and how they work closely with genetic services. Sondra Butterworth gave a very informative presentation on social prescribing and diverse rare communities. Sondra talked about improving quality of life and about quality of life theories and theories of need. She illustrated how this can be used to develop a model of social support for people affected by rare diseases. We then shared BDB top tips to improve communication and engagement. We talked about the need to provide accessible information and highlighted the challenges of translation. We gave examples of some of the creative ways BDB member organisations have co-produced accessible information resources and how they have become more inclusive and managed to increase their membership. We finished the day with a breakout session to explore how organisations can become more inclusive and the practical steps we can all take to make this happen.
The final day was ‘Putting Theory into Practice’ and we demonstrated some examples of good practice from within the rare disease community. The Cystic Fibrosis Trust talked about their experience of being part of the BDB network and how their project has enabled them to improve engagement. They shared examples of some of the fabulous resources they have created, how they have used them to celebrate diversity on social media and how this has brought families from diverse communities together to share experiences. They also talked about the overall learning from being part of BDB and how this has prompted them to develop a Diversity Strategy Group and improve their recruitment practices.
Bardet Biedl Syndrome UK also talked about their experience and learning from being part of the BDB project. They were very open and honest about the challenges they faced along the way and it was inspiring to see the learning throughout their journey and the positive outcomes. They now have a range of accessible resources available to their members and the whole staff team now feel more confident to engage with and support their members. BBSUK commented that while the grant from BDB was very welcomed, it was the learning from the project that had the greatest impact on their organisation.
The Sickle Cell & Young Stroke Survivors shared fabulous insight from their Family Resilience Programme. They talked through the challenge of recruiting members to the project and the reasoning behind the many decisions and considerations they needed to make. They talked about the stigma attached to people affected by Sickle Cell and the importance of understanding why this is and how this makes people feel. They illustrated the need to listen to communities whose voices are often unheard and to respond by providing appropriate support services.
Dr Parveen Ali from Sheffield University gave an excellent talk about the importance of providing culturally competent services. Dr Ali touched on the assumptions people make and the impact this can have on individuals and communities. She spoke about the need for training, the development of person-centred provision and the importance of communicating effectively.
We would like to thank all the wonderful speakers and delegates for making this such an informative, interactive and enjoyable few days. We want to thank and congratulate Findacure for hosting this workshop and for providing a platform to discuss the importance of improving engagement with people from ethnic minority communities. We hope the conversation does not stop here! We would like to welcome any patient organisation, support group and community network that provides support to families affected by genetic conditions to join the BDB network.