This year marked the 19th annual Mesothelioma UK Patient and Carer Day, which was held on 10 October 2024 in Leeds.
This event is an invaluable opportunity for patients, carers, family members, nurses, healthcare professionals, legal panel members and others to come together, share experiences and learn about the latest research and care for those affected by mesothelioma.
The day began with a warm welcome from Lorraine Creech, Mesothelioma UK Trustee, who highlighted the charity’s impactful work supporting patients and their families. Lorraine detailed the charity’s priorities, including sustaining services, reaching everyone with a diagnosis of mesothelioma, equity of access and establishing mesothelioma networks.
Lorraine also spoke about advocacy priorities, the charity’s finances and finished with a moving video about Bob’s journey. Produced in collaboration with Environmental Essentials and Mesothelioma UK, the video detailed Bob’s mesothelioma diagnosis and how the charity’s support became integral to his life.
Focus on nursing
Leah Taylor, Head of Nursing at Mesothelioma UK, then spoke about the work of Mesothelioma UK Nurses. The team of 30 nurses take care of mesothelioma patients in NHS hospitals all around the UK. Their posts are funded by Mesothelioma UK via charitable donations and kind sponsorship from partner funders.
Leah shared the great news that the charity now has two, much needed, Mesothelioma UK nurses in Northern Ireland. The team of nurses supports over 1,100 new patients a year, providing almost 30,000 episodes of care for mesothelioma patients and their families all over the UK. Many of these complex conversations would not happen if Mesothelioma UK expert nurses were not in place.
Talking about fundraising, volunteering, benefits advice, research and more
Attendees then heard from the inspiring Sue Farrall, a keen marathon runner and weightlifter, who shared her personal story of being diagnosed with mesothelioma two years ago. Now a passionate volunteer and fundraiser, Sue and her group, the ‘Magnificent 7,’ recently completed a walking marathon, raising over £10,000 for Mesothelioma UK.
We then had a financial update from Sarah Thomas, Benefits Manager at Mesothelioma UK, who discussed processing delays in claims with the Department of Work and Pensions, personal injury trusts, the charity’s Free Will writing service and the benefits of leaving a gift in your Will. Find out more about the benefits advice available here.
The morning continued with Samantha Westbrook, Mesothelioma UK’s Peritoneal Clinical Nurse Specialist, delivering a compelling presentation on the variability in diagnosis and treatment of peritoneal mesothelioma. Samantha emphasised the importance of research to address misdiagnosis and improve future care pathways.
Dr. Anna Bibby, Associate Professor and Respiratory Consultant at North Bristol NHS Trust, then shared an update on the ASSESS Meso Study. Dr Bibby has been working on this study for 10 years now. The first aim was to look at variations in mesothelioma and help to ensure data from clinical studies reflects the ‘real world’ of mesothelioma. She spoke for example, about the importance of the voice of those patients who choose (for whatever reason) NOT to have any systemic treatment. Having so far recruited over 200 ‘real world’ mesothelioma patients to the study, Dr Bibby and her team continue to follow these patients, looking at predicting prognosis, disease progression and management of pain.
The trial is still recruiting and is open to anyone with mesothelioma. Speak to your Mesothelioma UK Nurse or contact the charity directly if you would like more information about taking part.
Professor Clare Gardiner from the Mesothelioma UK Research Centre at the University of Sheffield, discussed the centre’s 11 research priorities, including five urgent areas: symptom management, diagnosis, treatment experience, palliative and end-of-life care, and barriers and facilitators of joined up service provision.
Updates on trials, patient stories, carers’ support and more
After a hearty lunch, we reconvened in the afternoon to hear from Dr. Sean Dulloo, Consultant Medical Oncologist at University Hospitals of Leicester NHS Trust, who discussed current and upcoming clinical trials, including:
- Promising results from the MITOPE trial, which involves injecting a drug called RSO-21 into the pleural space via an IPC drain.
- The eVOLVE – Meso trial, a global trial involving immunotherapy and chemotherapy combined.
- The SELECT Meso trial, which will start recruiting next year.
Anyone interested in taking part in or finding out more about clinical trials, should speak to their Mesothelioma UK Nurse, contact Mesothelioma UK or visit the charity’s website.
Michelle Spencer was diagnosed with mesothelioma at 60, she shared her emotional story of how a job taken in her youth led to asbestos exposure, resulting in mesothelioma 45 years later. Michelle commented on how since her diagnosis;
“life is so much more important to me. I appreciate every day. I love my family; I have wonderful friends, and I love life so much. I look at every day as another day to make memories. You have no idea what is round the corner.”
Laura Smith, Mesothelioma UK Clinical Nurse Specialist, provided an update on the charity’s Carers’ Course and the newly launched Patients’ Course.
Gail Hillson shared a touching story about supporting her husband, a mesothelioma patient, and their experience with the Carers’ Course. Read more about Mesothelioma UK’s support for Carers here.
Lee Wemyss, from DASH Global, and Leah Taylor, Mesothelioma UK’s Head of Nursing, explained the importance of the current Mesothelioma UK Patient Experience Survey on the ‘Your Health Companion’ platform whilst also sharing some insights into the results so far. The charity needs up-to-date patient experience data to help us approach the powers that be, pushing for change and progress.
The penultimate session of the day was led by Fiona Enright, a highly specialised Macmillan Oncology Dietician at Bradford Teaching Hospitals NHS Trust, talking about the importance of diet for mesothelioma patients.
Michaela Morris, Occupational Therapist, closed the day with an empowering session on the importance of reflection and relaxation.
Summing up the day
The day was full of hope and positivity and, as always, served as a reminder of how important it is for us to come together, share experiences and support each other.
We would like to extend our sincerest thanks to everyone who attended the day, to all of our speakers for their wonderful presentations, and to all our event sponsors – Leigh Day, Irwin Mitchell, RWK Goodman, Thompsons Solicitors, Hugh James, and The Asbestos Law Partnership LLP – without whom, the day would not be possible.