A dynamic group of patients with liver-related illnesses have established a new peer support group for fellow liver patients and are keen to encourage new members from across the region to join.
The South West Liver Buddies was officially formed in early 2020, just before the start of the COVID-19 pandemic, and despite the subsequent lockdowns and restrictions on being able to meet in person, has so far gained around 150 members and continues to grow. It started out with a small group of patients who were keen to give something back, set-up by the South West Liver Unit for service users, and has grown into a successful peer-run support group.
“We come from all over and from all walks of life, and each of us have had different liver disease journeys – some slow and progressive, some rapid and scary,” explains Josie, one of the founders of the group. “But we all have one thing in common, and that’s receiving our care and treatment at Derriford Hospital.
“After my liver transplant a few years ago, I wanted to give something back and to help others through what I had experienced, so I began to visit patients on the wards after my clinic appointments to support them. I met others who wanted to do the same thing and that’s where the buddy idea came from.”
Now patients with liver diseases and conditions associated with liver illness, as well as their families and friends, can join a dedicated Facebook group, attend meetings and events via Zoom, and reach out to the group over the phone or by email.
“Joining the South West Liver Buddies was the best thing I ever did,” explains Sam, who lives in North Devon. “We have nothing up here – no real information or anywhere to go, and it’s hard to know how to find other people who are suffering, like you, who you can talk to. It can get so very lonely… so this group is absolutely fantastic! It really helps people who don’t know who to turn to and it’s such a lovely, friendly group of people. They really accept you for who you are; there’s no judgement about your condition or how you came to have it, and they will literally do anything they can to support you. I’ve learnt so much from the meetings and I honestly don’t know where I’d be without them.”
“It’s so important for us to be there for other people,” adds Shaun, another member of the group. “The doctors and nurses at the hospital are brilliant at all the physical stuff, but they can’t tell you how you are going to feel emotionally. They haven’t been and done it – we have! Although we can’t give medical advice as such, we can reassure about what’s normal and share our own experiences and it can really put your mind at ease. And if you’re not sure about something, you just have to ask. The thing is we’ve all been there, and we can help.”
There’s a real sense of community spirit amongst members of the South West Liver Buddies, with stories of members sending care packages or baked goods to cheer each other up; the sharing of supportive and encouraging messages to those undergoing treatment and a generally positive sense of comradery. The activities that members of the group can take part in range from bingo nights to participating in walking challenges and virtual transplant games. In early 2021, group members and Hepatology staff jointly took part in a challenge to walk the distance between Derriford Hospital and King’s College Hospital in London, which is significant as it’s where liver transplant patients attend for their surgery.
“The idea for the walking challenge came from a conversation about how to keep liver patients fit and healthy during lockdown, and to help avoid non-alcoholic fatty liver disease,” explains Katherine, the group secretary. “We thought it would be great to encourage everyone to do something at their own pace. I could only contribute about 100 steps a day at that point, but it didn’t matter, it was the taking part and all doing it together that was really quite special. As a group we smashed the target much quicker than we expected, and have continued to walk the equivalent distance of the South West Coast Path and to famous landmarks. It’s been fun and really great having something to aim towards.”
The Hepatology team at University Hospitals Plymouth also regularly organise and facilitate expert talks and discussions via Zoom, for all things related to liver diseases and conditions, which many members have found particularly helpful.
Sam adds: “We try to get the right balance between taking it seriously and keeping it light with some good banter and having a bit of a laugh. It’s important not to let liver disease define you.”
“As a group we want to be there in any capacity that people need us,” adds Katherine. “There is of course plenty of information on the internet about these conditions and about having a transplant, for instance, but having people who can talk you through it, in real time, is invaluable. There are of course other national support groups you can join but it’s hard to get to know people personally that way. As soon as I joined the South West Liver Buddies I instantly felt very connected and like I really belonged. It’s like one big family and I’ve made friends for life.”
Katie Ramos, Lead Liver Transplant Coordinator and Nurse Specialist at University Hospitals Plymouth, said: “I’m absolutely bursting with pride with everything this group has achieved so far, from our joint step challenge to the small things each and every member does to support each other. It is truly fantastic. We now want to get the word out there and to make sure that all patients and their carers, from Somerset all the way down to Cornwall, are aware of the support available to them and know how to join the group.”
Today the group begin their latest challenge, to virtually walk to all the transplant centres in the UK, which equates to the equivalent distance of 1150 miles (2.3 million steps).
You can get in touch with the group via emailing email@example.com or calling 01752 439002.
To join the South West Liver Buddies Facebook group, please visit: https://www.facebook.com/groups/southwestliverbuddies/
You can also follow the group on Twitter: https://twitter.com/swliverbuddies