Metabolic Support UK (MSUK) is an umbrella organisation, focussing on the rarest Inherited metabolic disorders and they help build and empower patient organisations. MSUK started to notice an increase in the number of enquiries from people from ethnic minority communities and felt that they needed to develop their own knowledge and understanding to provide the best possible support.
MSUK received funding from BDB to deliver the following:
- Reviewed their data and added an ethnicity field to their Client Relationship Management system to further understand the demographics of their members
- Produced a patient insight series demonstrating the impact that living with an Inherited Metabolic Disorder can have on patients and families from ethnic minority communities – they provided a patient and professional perspective
- Established a working partnership with the East Lancashire Community Genetics team after meeting them at a BDB workshop
- Appointed their first Breaking Down Barriers Ambassador, who volunteers and works alongside the MDUK team to review resources and ensure they are inclusive and meet the needs of patients and families from diverse communities
- Ran a Breaking Down Barriers survey amongst their community, to assess the unmet needs, views and opinions of people from ethnic minority communities.
Findings from the survey highlighted the following:
- People need support to explain their diagnosis/condition to family and friends
- Some families will avoid or skip religious festivals or celebrations as a result of the condition. Others tend to ensure the condition can be managed in a safe manner such as providing suitable foods and avoiding fasting
- Whilst most participants felt they were not treated differently by healthcare services due to their ethnicity and faith, one participant felt they had been treated differently due to the colour of their skin and disability
- Healthcare services need to provide more language support, more inclusive/diverse materials and to educate nurses and doctors working with patients and families from diverse communities
- One participant felt there needs to be more healthcare community outreach programmes for patients and families
‘The patient insight series and subsequent meetings with both patients/families and professionals has helped us to expand our knowledge in this area and carefully consider how we may need to adapt our support services to meet any specific needs of patients and families from the BAME community.
This project has made us think more widely about the resources and materials we produce and helped us to identify ways to ensure the resources are more diverse and inclusive. The project has also enabled us to connect with other organisations also taking part in the Breaking Down Barriers project.
Having undertaken this project, as an organisation we now feel better equipped to support diverse communities.’ MSUK
You can find out more about metabolic Support UK via their website: