Our journey to improve our listening practices - Jeans for Genes

Our journey to improve our listening practices

Jeans for Genes launched The Listening Space in March 2023.  The project provides safe spaces in the form of a confidential online platform and direct conversations where people can share, in their own words, their experiences of living with a genetic condition and supporting and/or caring for those who do, whether those experiences are positive or challenging.

The purpose of The Listening Space

The purpose of the project is to seek to understand how Jeans for Genes as an organisation can listen deeply to the genetic condition community to hear what things are really like for them.  And to then explore how we can effectively honour and act upon what we hear in our work to truly transform the lives of individuals and families living with genetic conditions.

Through gathering collective voices we will identify key themes, which will:

  • Inform the planning and design of our grant programme.

Our annual Jeans for Genes event raises money from schools, business and the public which we then distribute through our grant programme to small patient groups and charities supporting the genetic condition community.  Over the past 3 years, Jeans for Genes funding has touched the lives up to 18,662 individuals and families.

We will adapt to what we hear through The Listening Space in order to improve our practices and ensure our funding programmes are as responsive as possible, funding what matters most to those living with a genetic condition and empowering them to have a greater say in shaping the service provision in which they participate.

  • Help us shape the messages we take out to the wider world when attempting to ‘bridge the gap’ between the genetic condition sector and the general public.

The Listening Space will help us ensure the genetic condition community have the opportunity to meaningfully participate in our work demystifying the experience of living with a genetic condition and to influence and educate others on the subject, which is often misunderstood or deemed too complex to grasp.

Why we ask just one question

Through our safe, online platform, and though face-to-face conversations, The Listening Space asks one simple question: ‘What is your experience of genetic conditions’? This single, open question, is intentional as we want people to share with us what they feel is most important for them to contribute, without us steering or prompting the agenda.

What we have been hearing from the community

So far, from participants across many genetic conditions, we have heard that:

  • There is an overall lack of awareness about genetic conditions outside of the genetic conditions community which leads to people feeling socially isolated and excluded.

“I experience a huge lack of awareness around my genetic condition”. Individual with Huntington’s Disease.

  • Living with and caring for someone with a genetic condition has a cost implication, impacting on family budgets and ability to maintain employment. The current cost of living crisis is making this situation even worse.

“Being disabled is expensive! We lost half our household income when I couldn’t work anymore but with increased costs.” Individual with Muscular Dystrophy.

  • That there is a need for further participation from the community and a desire to speak out for change.

“By the time a patient or carer reaches a charity there is often a journey riddled with adversity. It is important for this information to be shared and heard, so that we can work towards making the world a better place for those living with genetic disorders…. Thank you for giving me a safe space to speak and it is my hope this will help others.” Parent/carer of a child with Vascular EDS.

Next steps

We are excited to be on this journey to improve our listening practices and to make sure that what we fund, what we say and what we do is authentic, impactful and makes the biggest difference.

We’ve heard some very powerful voices in the initial phase of the Listening Space and can already see the impact that listening deeply is having on our work.  We intend to share our learnings and reflections with others as our listening work evolves.

In phase two of the Listening Space, we are planning to widen the opportunities for people to participate in the project, share their experiences and inform change. We will be taking the Listening Space on the road and going to where people are!

How to take part

If you would like to share, in your own words, your experiences of genetic conditions, click here to take part in The Listening Space – we really do, look forward to hearing from you! Thank you.