Pioneering service supports patients with liver disease

Vulnerable patients with chronic liver disease are being supported with their care through a pioneering new programme at University Hospital Southampton (UHS).

The innovative project, called HELIXR, aims to identify patients who are living with liver cirrhosis and either have a record of not attending vital appointments with the hepatology service or need to support to ensure they do.

Since its launch 18 months ago, 480 patients who would otherwise have missed appointments, have been added to the programme.

They are assisted by a team of peer support workers, known as ‘Champions’ who themselves have experience of some of the challenges patients might face, having lived with addiction or overcome other social issues.

Already, more than 330 patients have reengaged with medical services at University Hospital Southampton and attended vital liver scans.

Cirrhosis is a type of liver disease caused when healthy liver tissue is replaced by scar tissue. Without treatment, the liver can stop working, eventually leading to liver failure or hepatocellular carcinoma (HCC), a type of liver cancer.

Some of those most at risk of the disease and its fatal consequences suffer complex challenges in their lives, such as homelessness and addiction, while the most common causes is excessive alcohol consumption or long-term infection of the Hepatitis B or C virus.

HELIXR Champions work within the community to help patients reengage with their care, by either assisting with travel support and providing moral support at appointments, or by coordinating between other services such as addiction and social services.

Many have lived experience of being from underserved populations, usually from a past of living with addiction or experiencing other social issues.

Tanya Walker works as a champion and knows more than anyone the barriers that patients need to overcome to access care.

She said: “I come from a history of drug addiction, domestic violence and homelessness so I’ve been there and done that which makes it easy for me to talk to patients on their level and help them to understand how important these appointments are.”

Tanya has been in recovery since 2019 after participating in a treatment program for her addiction. During that time, she volunteered at various addiction centres and took on the role of a key worker, before becoming a HELIXR champion.

She continued: “Here I stand, five years later, in recovery and doing some really good work in the community. I know what it’s like to be afraid and judged, so I’m here to break down that barrier. I feel like I’m giving something back - I want these patients to understand that there is hope and to never give up.”

The HELIXR pilot is funded by NHSE and is led by Ryan Buchanan, honorary consultant hepatologist at University Hospital Southampton. He said “There are significant challenges in identifying patients at risk of liver cancer and keeping them enrolled in surveillance programmes, particularly those with a history of frequent drug or alcohol use, or who are experiencing homelessness.

“The aim of the project is to bridge this gap in their care and help them attend these vital check-ups to receive the treatment and care that they need.”

Deborah, 69, is a patient enrolled on the programme. She said: “Without wanting to sound dramatic, I don’t think I would still be here if it wasn’t for these guys, or I would at very least be a very poorly lady.

“With liver disease you must be on the ball all the time, with appointments and medication, but I wasn’t. It’s caused me to become very forgetful.”

After missing several appointments, Deborah was referred to the HELIXR team and put in touch with Tanya and the champion's service.

She said: “Meeting Tanya and Greg was the best thing that could have happened to me. My health has improved dramatically, and they make sure that I never miss an appointment and keep me on track with my medication. They really have changed my life.”

Talking about how patients are reengaged through the programme, Tanya explained: “Every patient is different, so we need to identify the barriers that are stopping them from getting to these appointments. It might be that they are homeless, in which case we might provide them with a pre-paid mobile phone to stay in touch and remind them. Other patients may be struggling with transport, so we pick them up or arrange transport.”

She added: “If patients are battling addiction and still drinking or using drugs, we will try to get them the help they need by enrolling them into a drug service and helping them on their path to sobriety.”

Liver cirrhosis is the primary risk factor for developing HCC, with 80% - 90% of people with HCC having cirrhosis.

In England and Wales there were 5,445 deaths from liver cancer in 2020 and HCC is expected to become the third most common cause of cancer death worldwide by 2030.

Dr Buchanan, who is also an associate professor of hepatology at the University of Southampton, added: “It is estimated that only nine per cent of cirrhotic patients in the UK, who are in touch with addiction services, are in a liver surveillance programme.

“I’m delighted that 331 people have now re-engaged with care. It shows just how effective this pilot is for people in our community.”