Feedback on the first part of ARMS-Hub

Alcohol-related liver disease (ArLD) is a big problem in the UK and the third main cause of early death. Alcohol use costs the NHS £3.5 billion a year. But not much research on ArLD has been done, mostly because of the stigma around it.

To try to fix this, we set up ARMS-Hub, a group with experts from different areas, totalling 31 people. The hub met online five times.

We also made two groups for Patient and Public Involvement and Engagement (PPIE) with people with lived experience and carers. One group had 9 people and met online so anyone from anywhere could join. The other group had 31 people and met in person through an alcohol service in Plymouth.

In the meetings, we found several problems in ArLD research. One is that there is a lack of education and awareness on the harms of alcohol from both the general public and healthcare workers. This makes people feel shame and guilt and they may not seek the help they need.

Another problem is accessing liver services and liver research. People who don’t have much money or resources might miss out as these services are mainly in big research centres.

We also talked about the language around alcohol use and liver disease and how it carries on the stigma even after people recover. The culture of alcohol use in the UK seems to add to this as it is socially accepted and there is peer pressure, but once people ask for help they can face discrimination and be left out by others.  

During our discussions, we talked a lot about how important it is to include mental health in liver services to address the causes of alcohol use and support people in their recovery journey. We held an in-person meeting in February and talked about how to solve this problem. Our goal is to see if it’s possible to include mental health support within liver services.

For that, we will:

  1. Map services that already exist and understand what exactly is needed
  2. Design a service that addresses those needs
  3. Evaluate if this service is practical and cost-effective (can be used in the NHS)

We are now in the process of writing up a study proposal to submit to the National Institute for Health and Care Research, who also funded the first part of the ARMS-Hub. This submission is expected to be in the autumn.

We would like to thank all of our stakeholder and PPIE members for their contribution to ARMS-Hub. It was vital to develop a meaningful and realistic project.

You can get in touch with us at arms.hub@nhs.net