Man with advanced liver disease encourages others to take part in research

A Southampton man who credits research with changing his life is now urging others to get involved.

Alan Prangell joined an advanced liver disease study at University Hospital Southampton (UHS). It is investigating whether his symptoms could be better managed at home.

Alan says taking part has helped him get his independence back.

He is calling for more people to sign up to Be Part of Research. This new service is managed by the National Institute for Health and Care Research (NIHR).

500,000 people changing lives

More than half a million people, including 27,800 in Hampshire, have signed up to be part of life-changing health and care research.

The Be Part of Research service has already enrolled more than 90,000 people across the UK to over 100 studies. These included the UK’s first norovirus vaccine trial.

Users can register to be told about studies into conditions they are interested in, such as diabetes. Trials take place in a variety of settings, including participants’ homes.

The official launch comes as new figures show more than 47,000 participants in Hampshire took part in research supported by the NIHR in the year following 1st April 2024.

Karen Underwood, Director of Research & Development at UHS, said: “Our research could not happen without patients and the public. With hundreds of studies happening at any one time across a wide range of conditions, the Be Part of Research match-making service can help you find and take part in the right research for you.”

Professor Lucy Chappell, CEO of the NIHR and Chief Scientific Adviser to the Department of Health and Social Care, said: “It is vital that health and care research represents society, reflecting the diversity within it to produce the best treatments. Research that includes people from all backgrounds and from across the country will produce findings that benefit and serve everybody.

“Being a part of research is a great way to get involved and give back in a way that can change lives, accelerate knowledge and benefit us all. Members of the public will be able to use the NHS App and be matched to vital trials through the Be Part of Research service.”

Alan’s story

Alan, 76, from Totton, experiences refractory ascites caused by cirrhosis (scarring of the liver). This condition leads to a painful, recurrent build-up of fluid in the abdomen.

Alan is not eligible for a liver transplant or a procedure to improve blood flow in the liver. He is now receiving palliative care at the end stage of his disease.

Treatment involves visiting the hospital every 10 to 14 days to have the fluid drained by inserting a tube into the abdomen for up to 6 hours. The procedure and fluid build-up can be painful. If large volumes of fluid are removed, patients may need to receive human albumin solution to help maintain blood volume.

Alan, husband to Pam, was invited to participate in the NIHR-supported REDUCe2 study. It is comparing home-managed long-term abdominal drains to standard hospital-based drainage in people with cirrhosis. As the safety and effectiveness of long-term home drains are uncertain in cirrhosis, the trial randomly assigns patients to either home or hospital drainage.

The study plans to recruit 310 participants across 35 sites in England, Scotland and Wales.

Alan, who most recently worked as a support worker, said: “Living with ascites for this past year has been really difficult. The fluid build-up I get causes extreme breathlessness. Before taking part in this research, I had to go to Southampton General Hospital all the time, sometimes two or three times a week, to have the fluid removed. This could take several hours.”

He added: “We were approached by the research team at the hospital. It was a walk into the unknown, but we were pleased to be part of the trial.”

Taking part in research

Alan, who joined the study at the beginning of the year, said: “At the start, I had a small operation to insert a tube into my abdomen with a tap to drain the fluid. Now, twice a week, the fluid is drained at home.”

The long-term drain allows fluid to be removed gradually at home over the course of the week. This prevents large build-ups. Community nurses trained Pam to manage the process - including draining the fluid, changing the bag and caring for the dressing without nursing support.

Alan had routine blood tests as part of the study. He also completed questionnaires during the visits from the research nurses to gather information about his quality of life, symptoms and use of NHS services. As his informal carer, Pam completed a monthly questionnaire as well.

He said: “I am in less pain and discomfort because the fluid can be drained more regularly. It can all be done at home, rather than going into hospital.

“It has been such a great trip back to independence for me and my wife. I can now enjoy fishing again - something that I love, and Pam has been able to catch up with her friends and family. We have even managed a holiday to Weymouth.

“Having the drain fitted has changed my life. I hope other people can benefit from me doing it. “

Pam said: “I can now do all the things that you take for granted, like getting a haircut or going for an eye test. I always had to cancel them because Alan was too ill.”

Clare Rook, Network Director, NIHR South Central Regional Research Delivery Network, said:

“It’s inspiring to see the breadth and depth of health and care research happening across the network. This is only possible thanks to the dedication of research staff and the thousands of participants who make it happen.

“The research taking place today is crucial not only for improving care now, but for shaping the innovations and treatments of tomorrow. With the Be Part of Research service we're making it easier than ever for people to get involved. Our goal is to ensure that research is inclusive, accessible and truly reflects the diverse needs of all our communities.”

About health and care research

Participating in health and care research helps find life-changing treatments and improve care for all.

Studies take place in NHS hospitals, the community or sometimes in your own home. For example, you could be asked to complete a questionnaire about a health condition.

Researchers often need people both with and without the health condition being studied so their data can be compared.

To learn more about research and find studies you might like to take part in, please visit bepartofresearch.ac.uk.