Living with diabetes? What matters to you?

South East London Integrated Care System wants to ensure that everyone living with diabetes receives the care they need.

We have set up a group of people living with diabetes who support the lived experience members of the Diabetes and Obesity Delivery Board (DOBD). The role of the Board is to agree the objectives for diabetes and obesity services across south east London and to ensure effective coordination across partner organisations in south east London. A key priority of the Board is to develop an outcomes framework including outcomes that matter to people in terms of their quality of life, their family as well as their care and experience of diabetes.

We teamed up with Mabadiliko CIC to help us engage with local people to understand what matters to people living with diabetes and at risk of diabetes. We were particularly keen to hear the voices of people from Black African, Black Caribbean and South Asian heritage, as type 2 diabetes is up to six times more likely in people of South Asian descent and three times more likely in Black African and Caribbean people.

You can read the report from this work here.

Outcomes which mattered most to people were divided into individual and collective ‘I’ and ‘We’ statements, as follows:

• I am always able to see an appropriate healthcare professional within a reasonable timeframe.
• I am provided with a range of clearly explained treatment options and have a choice in the final decisions made.
• I feel confident to carry out the self-management activities needed to manage my Diabetes.
• I am referred to physical activity support that fits with my budget and is accessible for me.
• We are able to discuss diabetes with people that we relate to who have lived experience of Diabetes.
• We know how to challenge or share feedback about our care and feel safe to do so.
• We receive motivational support to help stick to changes in our lives.
• We receive food and cooking advice based on our cultural needs if we need it.
• We have the opportunity to discuss non-health issues that are affecting our diabetes.
• Our healthcare professionals treat us with dignity and respect.
• Our healthcare professionals take time to understand our individual experiences and needs.

Participants also raised a number of important issues, such as a lack of trust of the healthcare system, a desire for advice to be tailored for cultural and social needs, and an interest in alternative medicines and holistic approaches, alongside peer support.

The diabetes programme is now considering how we work with people living with diabetes to track and measure against these outcomes.

Watch Mabadiliko's video to learn more about them and the project as well as see more information about diabetes.