Broadcast: News items

Spotlight on Dr Lucia Macken

Hepatology Clinical Research Fellow at Brighton and Sussex Medical School

Previous research

I am a medical doctor, having qualified in London in 2006 and my specialty is gastroenterology. I am quite senior in my training towards becoming a consultant, and it is common to do some research during this time - as part of this I am undertaking a PhD. My research interest is liver disease; national reports show that people who have advanced liver disease receive less palliative and supportive care, despite them having lots of symptoms, which has a big impact on their quality of life.

Throughout my medical career research was something that I always wanted to do. Prior to my current study, I assisted in research in people with inflammatory bowel disease. Not everyone necessarily wants to do research as part of their work but it is an important aspect of the NHS and in advancing healthcare and thanks to a grant from the National Institute for Health Research I am now leading on a clinical trial - the REDUCe trial - (Repeated Drainage Untreatable Cirrhosis).

Current research

Lucia Macken Spotlight PhotoMy research is looking at people with advanced liver cirrhosis. The group I am working with are, for whatever reason, unable to have a liver transplant and their life expectancy is limited. One of the main complications of having advanced cirrhosis is developing fluid within the abdominal cavity. The way this is managed, once medication stops working, is that patients have to come to hospital intermittently to have a drain put in. That's quite a large burden on them and often their families too, when maybe they would prefer to be able to spend as much of the latter part of their life at home.

I am researching a different method of draining the fluid, using a type of drain which stays in place, allowing people to be drained at home rather than hospital. If it is successful and shown to improve peoples' quality of life and symptoms, it could make a real difference to lots of people across the country, even globally.

The numbers of people dying as a result of liver disease in the UK has dramatically increased by about 400% over the last 40 years. So it is a big issue. However, as gastroenterologists or hepatologists, often the focus is trying to actively treat or cure people. We aren't as a body so comfortable with end of life care and seeing people facing the final part of their lives. This study is innovative as it focusses on supportive and palliative care.

As part of the study I go out and visit people in their homes, which is quite new to me. When you see people in their own environment as opposed to in hospital, it helps you to develop more understanding and insight in to their lives, which can be quite profound. Doing home visits was a little bit strange for me to start with but I am getting used to it.

My supervisor - Dr Sumita Verma - is really forward thinking, aiming to bring treatment out to people in the community with liver disease who are usually difficult to reach. That's what we should be aiming to do more of in healthcare. Thinking about my study, when it's clear that people are coming to the end of their lives, they should have appropriate care that manages their symptoms in a kind and compassionate way. Sometimes you feel that there must be a better way of doing things!

The best bit about my research is working with the patients. In research you get more time to spend with people and because I already have experience in liver disease during training, I can try and explain a bit more about what's going on with them when they may feel a bit confused about it all. Although their consultants will have already discussed it, sometimes it's not easy for patients and families to take everything on board.

Because the nature of the condition is so advanced it's expected that not all patients will survive for the study follow-up period, and that has been the case. A certain number have passed away during follow-up, which is difficult. It's humbling that even though people are clearly very ill, they are still willing to take part in research, and their families are often open to it even at such a very difficult time.

I'm not from a medical family, my mum trained as a nurse in the 1970s and I think that’s where my interest started. Traditionally a lot of people who become doctors have parents or family members who are doctors, so that is something I am proud of. When you start working as a doctor - and actually throughout the rest of your career - there are frequently challenges and stresses that you are under, and things don't always go the way that you would hope or expect them to. But if you have something you are really interested in and want to pursue, it is important to be focused and dedicated to get there.

The future

The REDUCe trial is really unique in the way it supports people with advanced liver cirrhosis, recently winning the Royal College of Physicians Excellence in Patient Care Lancet research award. We hope to develop this into a much larger study incorporating more hospitals across the UK, improving access to research. The long term aim is to improve end of life care for people with advanced liver cirrhosis.

My personal goals in the short term are completing the trial and then my PhD write-up successfully! I will be going back into clinical medicine, undertaking an Advanced Training Programme year in Hepatology (liver disease), including liver transplant, in two large London hospitals, to continue my training. My aim is to become a consultant in liver disease and gastroenterology. I would like to be research active in the future, but with the current climate in the NHS it is not easy to be a clinical consultant and do research at the same time. Hopefully it will happen, that's what I am aiming for.

By: Alexander Aghajanian
Last updated: Monday, 18 June 2018