Mesothelioma UK Clinical Nurse Specialist, Louise, talks about how her varied nursing career led her to focusing on caring for people with mesothelioma, as well as her work with Professor Dean Fennel at the Leicester Clinical Trials Unit.
Did you always want to be a nurse?
“I wasn’t one of those people who knew from an early age what they wanted to do. After completing my work experience in a nursery, I thought I had found my vocation as a nursery nurse. However, my careers advisor was less enthusiastic. They told me that training to be a registered general nurse would give me greater opportunities and still allow me to care for children if I wanted to.”
“I didn’t know much about oncology, so wasn’t really sure what to expect. Well, let’s just say I started work in that department in 1987 and didn’t leave until 2020!”
“So that’s what I did. I completed my training in 1985 and worked for about 18 months on a trauma orthopaedic ward. I really enjoyed it but after 18 months I was ready to move on. My career plan at that point was to become a district, or possibly a school nurse, but I didn’t feel ready to leave the Hospital environment yet.
“I was given an opportunity to work on one of the oncology wards, I was a bit apprehensive as I didn’t know much about oncology, so wasn’t really sure what to expect. Well, let’s just say I started work in that department in 1987 and didn’t leave until 2020! I fell in love with it. That might sound a bit strange, but I felt an affinity with the patients and families I met and had the privilege to care for. I’ve had various roles over the years, including working on the wards and chemotherapy suite, I’ve also been a ward sister and set up a day care unit.”
How did you become involved in mesothelioma and clinical trials?
“In 2008 I joined the Clinical Trial Unit as a Research Nurse, just about the only area of oncology I hadn’t worked in already. Initially the trials I was involved with were predominantly lung cancer focused, but when Professor Fennell joined the team, we started doing more and more mesothelioma trials. This is when I started working alongside Liz Darlison and found out about Mesothelioma UK and the work they do to support patients and carers living with mesothelioma.
“In 2020 I was very proud to become a Mesothelioma UK Nurse Specialist caring for patients in Leicester and the East Midlands region.”
“We try to promote trials as much as possible, getting the word out about what and where.”
“Those living with Mesothelioma are such inspiring people, perhaps because it’s a rare cancer and treatment options are fairly limited, they’re often very proactive at seeking trials and treatment, not just for themselves but to help others in the future.
“In Leicester we see patients who are willing to travel from all over the country to take part in clinical trials and many of these patients take part several trials over a number of years.
“Most patients that are seen at Leicester by Professor Fennell’s Team will be offered the opportunity of taking part in a clinical trial. Clinical trials give patients the opportunity to have treatment that is not currently available on the NHS. The evidence that these clinical trials provide help us to develop new treatments that are scientifically proven to be effective and have the potential to change practice. This has happened recently with 2 ground-breaking trials, Checkmate 743 and Confirm Study. The evidence from these trials has been accepted by NICE (National Institute for Health and Care Excellence) and we now have Immunotherapy available on the NHS. Ipilumumab and Nivolumab combination, as a first line treatment, and Nivolumab as second line treatment, for those who has first line chemotherapy before 14 July 2022.
“We try and promote clinical trials as much as possible. The Mesothelioma UK magazine Mesothelioma Matters gives information and the app enables people to actively search for current ones.” (Visit the Clinical Trials app page to find out more or download it by clicking the QR code below.)
“However, taking part in a clinical trial is not for everyone, and managing expectations and providing decision making support is a really important part of my role.”
What can a typical week at work involve?
“Most days I’ll start by answering emails and picking up any answer phone messages. These can be from patients and carers requiring advice and support about symptoms, treatment options, appointments and also from healthcare colleagues requiring information and advice about mesothelioma.
“I also help cover the Mesothelioma UK support line. This involves taking calls and offering advice and support about living with mesothelioma and those worried about risks of asbestos still prevalent in the UK.
“On a weekly basis we hold a multi-disciplinary meeting where the whole team (surgeons, pathologists, radiologists, oncologists and nurses) discuss patients diagnosed with mesothelioma, review scan and biopsy results and determine the best treatment option available.
“A major part of my role is supporting patients when they attend clinic appointments. I go to the pleural clinics to provide information to those who are newly diagnosed and the support I can offer as their Mesothelioma UK nurse. I also attend the oncology clinics to help support patients and families in their decision-making process about treatment options and initiate referrals to palliative care, dieticians and help with care at home when required.
“I regularly attend the Derbyshire asbestos support group, and, for example, could give a talk about my role or managing specific symptoms. In Leicester we have a monthly social support group, MELU (Mesothelioma & Lunch Cancer Luncheon Club). This not only gives patients and carers the opportunity to come together and share experiences, but is also a relaxed environment to talk to myself and other professionals about things that may be concerning them.
What do you value most about your current role?
“Having the support of Mesothelioma UK and the other mesothelioma specialist nurses is so special, you know you’ve always got people to call on for advice and support.”
“Having the support of Mesothelioma UK and the other mesothelioma specialist nurses is such a privilege; you know you’ve always got people to call on for advice and support who understand and share the passion for giving the best possible care and support. Here in Leicester we see patients from all over the country and having this network of nurses is so important to help co-ordinate the patient’s care pathway to minimise delays to treatment.”
“We’re here to support people living with mesothelioma in any way we can and hopefully make a significant difference to their lives.”