The British Liver Trust’s policy team works hard to raise awareness of liver disease and liver cancer with the Government and other lawmakers, highlighting the urgent need for early diagnosis and campaigning for improved treatment and care for patients.
Patient advocate volunteers play a crucial role in shaping and amplifying the team’s work. This can include speaking at parliamentary events, sharing their experiences with politicians, engaging with their local MP, attending focus groups and contributing to policy reports.
Richard Daniels, the British Liver Trust’s head of policy says: “Most politicians don’t have a medical or health background so are unaware of the issues surrounding liver disease and liver cancer. Lived experience of liver disease has power and authority and a patient talking about their symptoms and struggle to obtain a diagnosis can have an overwhelming impact on an MP. Combining it with our campaigning work and policy asks ensures politicians understand what they are being asked to do and what the solution could be.”
Emma received a liver transplant after being diagnosed with alcohol related liver disease. She shared her story with MPs at a special event organised by the Trust in Westminster earlier this year.
She said: “The lack of awareness of the different causes of liver disease and how treatable many of them are, is something I want to shout about to everyone. That’s why I attended the Westminster event as a patient advocate. I shared the trauma of my real-life story with people in power because hearing a patient talk about what they went through brings the facts and statistics surrounding liver disease to life.
I was well briefed by the British Liver Trust’s Policy Team before the event so I would be telling my story and including important facts the Trust wanted to get across. When I arrived at Portcullis House on the day itself I met and spoke with British Liver Trust staff first, then it was a case of manoeuvring ourselves around the room to speak to as many people as possible, with Trust staff guiding also me towards some key people.
Seeing the impact my liver transplant story was having on MPs and the empathy many had towards me definitely made being a patient advocate for the British Liver Trust worthwhile.
I talked about the struggle of getting an appointment, how my muscle mass deteriorated and I lost the ability to walk, as well as the realisation that if I had got a scan earlier, I could have made more lifestyle choices around alcohol
Two of us patient advocates at the event had had transplants and one hadn’t, and having people who had gone through all the stages of liver disease helped the policy makers think about what they could do to stop others reaching this stage. Seeing the impact my story was having and the empathy many had towards me definitely made it worthwhile. There was a real sense of achievement afterwards and I feel I made a difference. 
I was seven months post-transplant then, so needed a couple of sit-down breaks during the event. I felt emotionally drained by the end of it because I was almost reliving my near-death experiences with everyone I spoke to, but it was also very cathartic. I also organised for my local MP to come to the event and she whisked me away for lunch, where I spoke to her more about why I was supporting the British Liver Trust’s work.
Volunteering really does make an impact and that’s why I continue to do it and would recommend it to others 100%. It turns a negative part of your life into a positive for you and others and gives a real sense of making a difference to other people’s futures.”
Find out more about volunteering with the British Liver Trust.
