I really want to raise awareness of liver disease and make a difference because my dad died of MASLD aged just 62. I had already shared his story on the British Liver Trust’s website so when the Trust invited me and my step-mum Dorothy to be part of their Liver Health Awareness event in Westminster we immediately said yes. Things need to change and there is no bigger platform than Parliament so we knew it would be a fantastic opportunity to speak to MPs and hopefully get them on board.
To help us prepare, the Trust’s policy team sent us an email outlining the structure of the event and what our roles would be. As well as telling the MPs about my dad, there were also key messages that the Trust wanted us to share with them. This included asking them to write to their local health board about commissioning an early detection liver disease pathway and to call on the Department of Health to provide early diagnosis technology for liver disease and liver cancer in the community.
We then had an online call with the policy team and other volunteers who would be at the event too. It was nice and informal and everyone was really friendly. We also set up a WhatsApp group so we could message each other beforehand and when we all met outside Parliament it was like we already knew each other. Even though everyone’s story was different, there was a real bond between us.
Meeting MPs was a very positive experience and I could see they were very receptive to what I was saying
Parliament has airport security and you can see the armed police so Dorothy and I felt a bit apprehensive at first. However, we all went in as a group, were shown where we had to go and never felt we were on our own, and it was really exciting to be there.
Dorothy met the MPs coming into the event, told them about Dad and then showed them into the main room where I was with the policy team and other volunteers. Richard the policy manager introduced me to the MPs and told them about my dad. I explained that we needed more awareness of liver disease and also showed them the map which illustrates which regions in the UK have a pathway for early detection of liver disease. I asked where their constituency was so we could see whether they had one.
It was a very positive experience and I could see the MPs were really receptive to what I was saying. I can’t oversell how important sharing your story is because we brought a personal, human aspect to the message that made them say “Oh wow!” and, as a result, I now genuinely believe that liver disease will be higher up on their agenda.
