On 29 March, Genetic Alliance UK hosted a roundtable meeting at Great Ormond Street Hospital bringing together people from the rare disease community and the Secretary of State for Health and Social Care, Sajid Javid, to discuss health inequalities, research, and innovation. Tiffany Hesson, MDUK’s EDI Ambassador and mother of Roman who lives with LMNA-CMD, was invited to speak at the roundtable and tells us about her experience.
This meeting brought together people with first-hand experience from the rare disease community - including clinicians, researchers, and individuals who live with rare conditions and their close family members- with Sajid Javid. They were able to discuss the frustrations of not being listened to in medical appointments, inequalities when completing application processes and in particular their experiences of racism within the NHS. They went on to discuss the importance of screening babies for conditions at birth and the future of research into rare diseases, including the gap in ethnicity representation and how to diversify patient participation.
This meeting comes following a recent publication of the England Rare Diseases Action Plan 2022 that aspired to improve the lives of people living with rare conditions. The plan lays out intentions to “ensure any impacts on health inequalities are considered,” working towards this by “involving a diverse range of voices at every level of policy development.”
Meeting Sajid Javid was particularly important to Tiffany as her passion is to eliminate struggles as much as possible and to raise awareness of the conditions that affect her son, other children, and carers in her position.
I am so passionate about making a change so that when Roman is older, there are fewer barriers for him to break down. He has a muscle-wasting condition, that's one challenge, he's a young, black male living in England, that’s another challenge, and so I want to break down as many barriers as I can.
"I want to make the road easier for Roman, and other people living with rare conditions, because they’re already going to have a lot of challenges. It's rare, so not a lot of people understand. The more we speak out, the more we can talk about our lived experiences, the more understanding people have, the more changes can be made.”
Tiffany was excited by Sajid Javid’s engagement. Throughout the meeting, he actively asked questions and showed an interest in bridging the gap with multiple services, making the processes easier and fighting for more research funding into rare diseases. “When I left, I felt he really had listened, and it wasn't just a box-ticking exercise for him. I left thinking he was passionate about rare diseases.”
After the meeting, Sajid Javid took to twitter to mention the event, saying
1 in 17 people will be affected by a rare disease so improving their lives is a priority for me.
Putting the voices of people with first-hand experience at the forefront is necessary when driving changes that address true needs. We know that we can beat muscle-wasting conditions, and other rare diseases, when we work together, and so opportunities to contribute to discussions and accelerate change are exciting. We look forward to continuing to champion active change. Tiffany continues
“People are not just listening and then going about their day but listening and then actually doing something about it.”
“You feel like you're the only one. But when you talk to other mothers and people that live with a condition, even though they have different conditions, we all have very similar experiences. You discover that it's not just you, a lot of people are living with the same process and the same challenges. It was good to have a community that understood.”
Michaela Regan, MDUKs Head of Policy and Campaigns, said 'We're delighted Tiffany was invited to speak with Savid Javid. MDUK is actively working to improve equality and inclusion for people with muscle-wasting conditions, so being invited to take part in discussions is very important to us. We look forward to more conversations with policymakers to create a world where the needs of people with muscle-wasting conditions are included and celebrated.'