Thoughts Into Action: Report

This project aimed to identify what quality of life is as determined by our Inherited Metabolic Disorder (IMD) community using a research methodology that allows them to speak, on their own terms, and for their stories to be meaningfully used to affect direct change. Working with a grounded theory research specialist we conducted conversations with people living with IMDs to provide key insights into how our communities live with their condition and explore how they perceive everyday Quality of Life (QoL).

QoL is a term used widely and variably in the rare disease world, but we wanted to ask if the definitions used to make decisions that impact on our communities’ lives reflect their lived experience. Using the information gathered through our research, we explored how everyday quality of life, as identified by the IMD community, is served by the current UK rare disease and wider policy landscape. And, as the umbrella patient organisation for people living with an IMD, we asked if we currently structure our services to authentically reflect the needs of our community?  

We are motivated to identify our own relevance and purpose as a patient advocacy group to ask the question: If we weren’t here what would change? 

Read the report below which delivers both a plan of action for MSUK’s work and a set of ambitious and achievable recommendations for all rare disease stakeholders to enhance the everyday quality of life of all people living with an IMD in the UK by 2030 as identified by the patient community.

Take some time, grab a brew and get comfy.

It’s often easy to look for the for key points, however, our Thoughts into Action report tells a story informed by the lived experience of our community centred around key themes identfied as contributing to living well with an IMD.

Want to navigate to areas quickly? We’ve helped you out, and each section is linked on the contents page!