Patient & Carer Day 2019

Our 14th annual Patient and Carer Day in Blackpool was an opportunity to meet others with similar experiences and learn about the latest mesothelioma research, treatment and care. Guests heard from speakers including oncology consultants, researchers, support groups and other patients sharing their stories.

Our Head of Services, Liz Darlison and Dr Jeremy Steele, Consultant Medical Oncologist at St. Bartholomew’s Hospital chaired the morning session that opened with a brief talk on the history of the venue. The Imperial Hotel has accommodated many famous names over its 152-year history, from Dickens to Churchill.

The first speaker was Charles Pickles, who co-founded Lucion Environmental in 2002, which at the time of his exit from the company in 2019 was the UK’s largest asbestos consultancy. Using his broad experience in the field and firm understanding of the risks and challenges presented by asbestos, Charles made a strong argument that the current advice needs to change, particularly in our public buildings such as schools where children are at particular risk.

Dr Catherine Henshall, Senior Research Fellow at Oxford Brookes University then presented the interim findings of a study, which was funded by Mesothelioma UK, into mesothelioma patients’ experiences of follow-up care across three NHS trusts. The study aims to identify best practice for patient follow-up care to help them to lead fulfilling lives and ‘live well’ with their condition, with the intent to inform NHS trusts nationwide about providing comprehensive, high quality care for mesothelioma patients.

Tracey Wood, founder of the Glynnis Gale Foundation, which supports mesothelioma patients and carers in Southern Africa, told the story of her mother, after whom the foundation is named. Tracey described a recent visit to South Africa to meet patients, carers and healthcare professionals, and the foundation’s aim to build a hospice.

Professor Dean Fennell, Consultant Thoracic Medical Oncologist and one of the leading authorities on mesothelioma clinical trials in the world, gave an update on clinical trials in the UK and worldwide. He included an insight into the recent results of the PROMISE-meso trial, which found that patients receiving pembrolizumab immunotherapy for malignant pleural mesothelioma did not experience longer overall survival or progression-free duration, which was presented at the European Society of Medical Oncology (ESMO) Congress 2019 in Spain.

Professor Fennell reiterated the words of lead study author, Professor Sanjay Popat of the Royal Marsden Hospital, that while pembrolizumab was not superior to chemotherapy, survival times were similar, suggesting immunotherapy might offer an alternative to chemotherapy.

Dr Noelle O’Rourke, Consultant Clinical Oncologist in Glasgow, which has the highest incidence of mesothelioma in the UK, spoke about radiotherapy options in the care of mesothelioma. The resounding message of her presentation was that unfortunately, mesothelioma is not a well-known cancer in the broader healthcare community so mesothelioma patients need to be ‘selfish’ and ask about treatment options. Get as much information as you can. Call the Mesothelioma UK information line and speak with one of our clinical nurse specialists. The rallying call, “don’t be afraid to ask!” was met with enthusiastic applause by an audience that clearly understood the importance of that message.

Dr Kathryn Gaunt, Consultant in Palliative Medicine, and Sister Natalie Barnett, Lung Cancer Clinical Nurse Specialist, introduced palliative care and gave personal insight into the way in which this service is delivered in the East Cheshire NHS Trust. After lunch, Dr Avinash Aujayeb took over from Dr Jeremy Steele to chair the afternoon session with Liz, which changed from the published programme.

Before the first speech, Liz presented the Smedley Family with their award for Team Fundraiser of the Year in recognition of their amazing contribution to the charity. This included two fundraising events that raised a total of £42,000 and an introduction to JDR Cables, which made Mesothelioma UK its charity of the year for 2019.

Liz then presented Chris Willis with his award for Most Inspirational Fundraiser of the Year, a well-deserved award as Chris then opened the afternoon session with a powerful telling of his journey with mesothelioma. He started with a period of symptoms that were diagnosed as everything from a poor diet to hernia, which resonated with many in the room. He was finally referred to Guy’s Hospital for confirmation of the mesothelioma diagnosis, where, he said, “I met the ama zing Rachel Thomas,” Mesothelioma UK Clinical Nurse Specialist. Chris said, “I couldn’t even pronounce it, let alone know what it was.” He spoke honestly about the emotions that he and many patients feel including guilt and fear, and how counselling helped. Ever thinking about others before himself, Chris said, “I always say it’s a lot harder on your loved ones than it is on the patients.”

Chris has just been informed of a new tumour in his pelvic area and is due to return to Guy’s but is currently well, continuing to work as a primary school teacher and making the most of every day with his wife, Evelyn. His speech touched every person in the audience and he left the podium to a spontaneous standing ovation. Thank you to Chris for sharing his story, which you can read in full on our website.

Jennifer Seavor, Senior Associate with Royds Withy King, gave the audience an insight into the current UK status of medicinal cannabis and CBD oil, which has seen a massive growth in interest in the UK for treatment of a variety of medical conditions, reiterating Noelle’s earlier call to action, “don’t be afraid to ask!”.

Professor Angela Tod and Dr Stephanie Ejegi-Memeh from the University of Sheffield then gave a summary of patient and carer research including the RADIO Meso, MORE and MiMES studies and a wealth of other research being conducted around the UK that aims to provide evidence-based recommendations to healthcare professionals.

They were followed by Lorraine Creech, Mesothelioma UK Clinical Nurse Specialist Team Leader, who provided additional details on the Mesothelioma Outcomes, Research and Experience (MORE) survey, which invited patients to describe their experience of investigations, treatment and care. 652 surveys were distributed, 510 were returned and 505 were validated by our Clinical Nurse Specialists, which will now be analysed. The survey will enable Mesothelioma UK to inform healthcare providers about what is being done well, what could be improved and where there are variations in treatment and care.

It will also help Mesothelioma UK to develop its services to complement those of the NHS. Mesothelioma UK will make recommendations representing the patient experience and circulate these to the wider mesothelioma community and healthcare providers.

Liz closed the event with an introduction to Mesothelioma UK’s team of clinical nurse specialists, who really are the charity’s ‘tour-de-force’ as described by a senior consultant.

The annual Patient and Carer Day is a chance for those affected by mesothelioma to meet each other, share stories, ask questions and hear from healthcare
professionals.

Thank you to all of our speakers and guests for making this one another valuable event. We’ve tentatively booked Southampton for the 2020 event, so please keep an eye on our website where you can join our email list and follow us on social media to be the first with the details.