Metabolic Support UK share about their project, Thoughts into Action, and explain how you can get involved.
Metabolic Support UK (MSUK) was founded in 1981. We are the leading organisation for Inherited Metabolic Disorders (IMDs) based in the United Kingdom, supporting thousands of people worldwide. Over 500 IMDs exist and affect approximately 20,000 people in the UK and an estimated 3.5 million people worldwide. However, we understand that the only way we can truly support the IMD community, is to listen to them and make sure we are advocating for the things they tell us are important. That’s why we are running the Thoughts into Action project and you can help us by making sure your voice is heard!
This is a project that aims to understand what quality of life means to people living with an IMD using a research methodology that allows the community to speak to us in their own words and on their own terms to allow us to make meaningful change. Unlike other research projects that employ questionnaires or interviews, we are working with a research specialist to help us understand what things are important to people living with an IMD. We are inviting people to take part in a short research conversation to tell us about their everyday life and how they perceive quality of life. These insights will help MSUK to understand how to structure the services we provide to meet 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?
We asked Jake Lockyer, a person living with an IMD and a member of the Thoughts into Action Steering Committee, why he chose to take part in a research conversation. This is what he said;
‘As a patient living with an IMD it is often difficult to navigate through the system to find the best support, if any.
By taking part with MSUK in projects and research it’s a great way to voice my concerns and experiences personally living with an IMD.
There is no other way to be listened to in the community of IMD’s I feel, the NHS is stretched and focus on treatments only/if any are available.
My life has been impacted significantly. But having relaxed conversations with MSUK really makes it feel like changes are happening, the suggestions I have made are being taken further which is something I couldn’t ever do on my own.
There is never the need to share what you don’t feel comfortable with and although we may feel boring when explaining our difficulties, this is most certainly very inspiring and interesting to those working to help us and not living with an IMD.’
Our research team are finding the research conversations really insightful, and it is helping us to understand what matters most to the people who are taking part. However, a common concern raised by several participants is the fear that their experiences may be boring for our research team. Toni from our research team has been keen to dispel this myth and has created a short video to encourage people to get involved. She says ‘We want to hear what matters to you, whatever that might be. Whether it’s advocacy, photography, football, video games or even if you are not quite sure yet what is important to you, please do consider reaching out’.
We are actively reaching out to the IMD community to encourage anyone who may be unsure if they have anything to share with us. You do and unless you get in touch, we won’t know what matters most to you!
Recruitment for this research project will close on the 30 June 2023 and we will be reflecting on what people have told us and looking for any shared experiences, ideas and challenges. These shared learnings, known in research terms as the analysis of the data, will help MSUK to think about what support our community wants from us and how we will deliver this. We will create a report with recommendations that we will share with key groups who have an interest in making life better for people with an IMD. We will also share the findings widely with stakeholders like policymakers, who know and understand little about what life is like with an IMD but who influence the policies and processes that can help or hinder the community.
Make sure your voice is heard and help make a difference. Get in touch with the team at tia@metabolicsupportuk.org to find out more.
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