“People know exactly how you’re feeling”: How virtual support groups have been a lifeline for liver patients

Posted on: 20th February 2021

Lianne (pictured) is a Liver Transplant Social Worker at Freeman Hospital in Newcastle. She explains how the British Liver Trust’s virtual support groups have supported transplant patients through the pandemic.

“Before the pandemic I’d always been keen to put more peer-to-peer patient support for transplant patients in place. I’d thought about online groups, but encouraging patients to try new technology seemed too much of a barrier.

“Then when the first lockdown happened in March 2020 the whole landscape changed. I heard that the British Liver Trust was setting up its first virtual support groups, and I could see this could really work. It was desperately needed too, as transplant patients were starting to shield at home. Our first group ran in May and we were overwhelmed by the demand.

The group has transformed the way we support liver transplant patients.

“I had envisaged that the first people to sign up would be those on the transplant waiting list. But in fact it was people who were post-transplant who wanted support. It is not an understatement to say they were absolutely terrified as we went into lockdown. With a weakened immune system many were frightened to leave the house, extremely concerned about accessing food and medicine, and desperate for answers to questions.

“Very soon pre-transplant patients began to join, with some joining after being listed during lockdown. It now feels like a natural next step; after being put on the waiting list, patients can then join the online support group.

“The group has transformed the way we support liver transplant patients. The outside world might assume that a liver transplant is the final stage of the journey; that afterwards you are ‘better’, but in reality it is a new future. It is a lifetime of medication, health concerns, guilt or gratitude to the donor who died and donated their organ, and when coronavirus arrived it brought with it new anxiety and concerns.

“The virtual support group has made an incredible difference to everyone as they are now able to speak to each other from their own homes; people they didn’t know before, but people who are in the same boat.

“Amy from the British Liver Trust helps to facilitate the groups. She brings years of experience of providing support for patients and she is really valued by everyone.  She makes sure that everyone has the opportunity to speak, even if there are 15 people in a meeting. The charity has good resources, which makes running the group easier.  A simple agenda gives the meeting structure, with ice-breakers and good news stories to finish, to leave people feeling positive.

“We can run sessions dedicated to sleep, medication, emotional wellbeing or exercise. Amy shares stories, and helps people form connections, showing that whatever the reason for being in the group, they are all in it together and they are stronger for it.

“Amy also provides an update on the latest support and information available and I provide an update on the situation in our hospital.  The transplant co-ordinators often join in and we have been very fortunate to have one of our consultant hepatologists join to provide information and answer questions.

We are creating a whole new level of connectedness.

“The group helps people come to terms with the situation they find themselves in. No-one wants to be so ill that they need a liver transplant. Equally, they don’t want their transplant to be delayed. You can’t dress it up, the pandemic has created a serious situation. But through the group people make friends with people who know exactly how they’re feeling and what they’re going through. Those on the waiting list are able to get first hand advice from those who are post-transplant. And those who are post-transplant feel a sense of purpose in telling their experience.

“Most importantly, we are creating a whole new level of connectedness. We are putting people in touch with each other who would never have met.

“Not everybody is ready to engage straight away. While some embrace seeing each other online and talking, others might leave the camera off and simply connect and listen. Last week someone turned on their camera for the first time, and the group were so supportive and encouraging. It is lovely to see.

“I am sure the virtual support groups will continue long into the future, but there is a definite keenness to meet in person when we are allowed to. Liver patients have told me that they now see people at the liver clinic and recognise them from the screen! Amy and I will encourage smaller regional groups to come together informally when the lockdown restrictions are lifted. It is good for patients to empower themselves and each other and feel some control over their own situation.”

The British Liver Trust runs virtual support groups for liver patients and their loved ones across the UK. To find out more and sign up for a group, visit Register interest in attending a virtual liver support group - British Liver Trust