In this blog, John tells us of his experiences of a life-changing diagnosis in 2018, and the changes it led to in his own life. He also speaks about the changes he would like to see happen in Scotland to protect others from the harms caused by alcohol.
SHAAP lived experience spotlight
In 2018, John collapsed and was taken to hospital, where he was diagnosed with severe cirrhosis of the liver. This was the beginning of a profound journey for John, who found out he needed life-saving surgery and has gone on to become a Scottish liver health advocate and peer supporter.
Prior to this, John described himself as a ‘social drinker’, with no idea that his alcohol consumption levels may have been making him ill. John was a member of the merchant navy for almost 3 decades and states that he drank almost every day but wasn’t aware of the risks to his health.
When John collapsed and was brought to hospital in 2018, he went through a series of tests and was told that he had severe alcohol-related liver damage. This was a huge shock to John, who had never considered himself a heavy drinker or someone with any kind of drinking problem.
“In my younger days I drank a lot socially but it was a huge shock to me when the consultant told me that the liver damage was because of alcohol. I had never considered myself to be an alcoholic or to have had any problems with alcohol.”
After a series of tests, John was told that the damage to his liver was so severe that he required a liver transplant and that he needed to stop drinking completely. He was placed on the liver transplant waiting list and referred to an alcohol recovery programme.
“After I was placed on the transplant list I was referred to a recovery programme in Falkirk. It was really hard to go because I was really ill but I managed to go and I stopped drinking.”
After 11 long months of declining and waiting, John was given the call that a liver was available, and was taken to the Edinburgh Royal Infirmary for his liver transplant procedure to take place.
John says that he saw marked improvements in his health as soon as he’d had the transplant, and this his life and health was forever changed from that point.
However, about a month after the transplant, John was given the shocking news that his old liver had been cancerous – the doctors had found 5 tumours after removing his liver.
“The doctors told me I wouldn’t have lived another six months if the cancerous liver hadn’t been removed. I didn’t know I had cancer. I was really lucky to be given the transplant when I did.
“I decided then that I was going to help the community and three months after the transplant, I was asked to give peer support with the transplant board.”
John then made it his mission to use his experiences to help others. Through the recovery course that he had attended, he was offered the opportunity to be trained in peer support and to enrol in an HNC in community work. John also took part in a counselling training course.
“I love volunteering. I’ve been a support worker for individuals in recovery, worked with individuals waiting for a transplant like I was, and I’ve started up an alcohol liver group which still runs every month with the British Liver Trust.”
We spoke to John about what he’d like to see change in Scotland to protect people from the damage that alcohol can cause. He had some suggestions:
Make liver function testing and screening more available
John said that he’d like to see liver function tests being carried out more routinely by medical professionals placed to do so in Scotland. He’d also like to see the implementation of Fibroscanning – a type of imaging to look for damage – being used more widely throughout Scotland.
John felt that the use of these measures more routinely could have picked up his liver damage earlier, as well as helping the people he provides peer support to.
“A lot of the problems I see in my volunteering could have been solved or sorted earlier if the available tests had been used properly. Doctors need to start looking at the whole picture when patients present with symptoms like mine and make sure they run the tests available to them.”
“Screening is so important in preventing liver damage getting to a serious stage.”
Ban alcohol marketing
We also discussed population-wide measures and what John thought might make a difference to Scottish society as a whole.
John expressed that he has concerns around the pervasive nature of alcohol marketing and the effect that this is having on people’s alcohol consumption in Scotland, particularly in its influence of young people.
“I think that they should stop alcohol marketing in the same way that they did with tobacco. I definitely think seeing adverts everywhere nudges people to drink. It’s so normalised in Scotland but we shouldn’t have to see alcohol logos and reminders in public places and at sports games and such like.
Naturally, if marketing and advertising were stopped it would prevent some of the harms in Scotland from happening. Young kids are far too exposed to alcohol reminders in Scotland – it’s everywhere.”
Labelling
John also discussed alcohol labelling and the potential to introduce warning and information labels on alcohol products.
“I think introducing labels which tell people of the dangers of drinking and what this can do to your health would be a good step in Scotland. People should know that alcohol can cause cancer and liver problems as serious as needing a transplant. It just isn’t talked about in Scotland.
If you look at the labelling on tobacco products, they should really do the same for alcohol, which is also hugely harmful to health. It’s just as serious and should be treated the same.”
Reducing stigma and raising awareness
“Stigma stops people from getting help. It’s a terrible thing. There is a lot of stigma around liver disease and alcohol harms. People in Scotland need to be more open about the health problems that alcohol can cause and doctors should be trained to approach and talk about these things sensitively.
“Some people aren’t even aware about the tests available to them to check on their liver health. People also aren’t always aware how important your liver health is to your life. I want to make people more aware of this and prevent people from getting to the stage where their liver is damaged.”
John has now been sober for over 5 years and is devoting his time using his personal experience to help others. John continues to raise awareness of liver disease by working with organisations like the British Liver Trust and provides peer support at the transplant unit.