At this year’s Patient and Carer Day, held at Leicester City’s King Power Stadium, we welcomed around 170 patients, carers, family members, legal panel teams, support group members and healthcare professionals.
The day started with a welcome from Mesothelioma UK Trustee, Kate Williams and Emily-Jane Scandrett – both advocates and patients. They spoke of the ‘lifeline’ that Mesothelioma UK provides, and stressed that the day was all about making connections, and sharing experiences and hopes.
The pair also asserted some clear and positive messages for the day including that “you do matter, there is support”, “we’re not alone – we’re all part of something bigger” and that here, “you belong, you are seen, you are valued”.
‘Doing the impossible’
Mesothelioma UK Clinical Nurse Specialists, Leah Taylor and Samantha Westbrook then introduced David and Ali Staley. David has been living with mesothelioma for almost 10 years. Reflecting back, he remembered “feeling sick going to his first Patient and Carer Day” but that it was a proud moment to be standing on stage at this year’s event.
David and his wife, Ali spoke movingly about his mesothelioma journey, pointing out the different phases that he’s been through and advising that you start by doing what’s necessary, then do what’s possible and enjoy the time you have, before suddenly, you are doing the impossible!
For David, this included a strenuous cycling challenge in 2017 to raise awareness and funds where he made £15,000 for the British Lung Foundation and Mesothelioma UK. Together with Ali, David also hosted a special Mesothelioma Charity Ball that raised a further £39,000 to support nurses, fund research, and help patients to live longer and better.
David stated that “nobody should have to receive that diagnosis without further support” and that “Mesothelioma UK have been fantastic”, a “welcoming, friendly, lovely group of people”. He believes that he wouldn’t have achieved what he has without the amazing support of his wife, kids, family, friends and NHS staff, with a “huge extra thank you” to Mesothelioma UK.
You can read David Staley’s patient story here.
Debunking myths around civil claims
Our next session was chaired by Carolyn Quinn, former BBC Radio 4 journalist and Mesothelioma UK ambassador. Carolyn interviewed patient, Tony Nicholson and Rosemary Giles from Irwin Mitchell about his civil claims process.
Tony was initially reluctant to bring a claim as he didn’t know what to expect and was nervous about claiming. He also felt guilty about taking a case out against the company (for whom he still works) but was reassured that they have a duty of care to employees.
The funds claimed have allowed Tony to enjoy life a bit more, given him an option to retire earlier than planned and allowed him to continue private radiotherapy treatment. It has also provided his family with reassurance and support.
Tony said that he “didn’t have to fill in a single form” and advises other people: “don’t be scared to have a go”.
Read more on the Legal Advice section of the Mesothelioma UK website.
Creating a new strategy for asbestos
The first morning session concluded with Mesothelioma UK ambassador, Richard Blunt talking about the urgent need for a national asbestos strategy.
Richard explained his mother’s story of being exposed to asbestos whilst working in the NHS as a GP and consequently diagnosed with mesothelioma.
Richard set out that the current UK-wide campaign is ‘standing on the shoulders of giants’ – those campaigners and organisations who have paved the way over past decades, many continuing to do so much dedicated work today. Most important have been the patients who have championed and passionately campaigned on this issue for many years, alongside organisations such as the Mavis Nye Foundation, Respublica, Airtight on Asbestos and Asbestos Information CIC; campaigns such as Mesothelioma UK’s Don’t Let the Dust Settle campaign; journalists such as Steve Boggan and the Daily Mail’s campaign ‘Britain’s Hidden Killer’; and wider society including the asbestos surveyor and removals sector and Trade Unions.
Richard highlighted the government’s Work & Pensions Select Committee’s report into asbestos and that its recommendations for establishing a register and focusing on a plan to remove the material from public buildings remain at heart of their campaign work. However, he stated that it’s “amazing that’s it has taken until 2025 that it should be part of policy to remove asbestos”.
Richard mentioned that a census around asbestos in public buildings was proposed at the recent Labour Party conference but there’s still a need for a comprehensive asbestos strategy at the highest levels. He encouraged attendees to contact their local MP, raise awareness on social media and get involved in the wider campaigns.
Groundbreaking research
Attendees returned to the conference room to hear from Clare Gardiner and Beth Taylor from the Mesothelioma UK Research Centre. They discussed how their research benefits families living with mesothelioma, and how they involve patients and carers in this research.
The Centre has produced over 200 different research outputs since 2020. Clare and Beth ran through current and past projects including Supporting Our Supporters; supporting decision making on place of death and care; the HIT-MESO sub study; Coroners study; access to systemic anti-cancer therapy and decision-making; Immunotherapy; Scanxiety experiences; the Understanding Mesothelioma book and Living Alone With Mesothelioma.
Read more about the work of the Mesothelioma UK Research Centre here.
Updates from healthcare professionals
Our Clinical Nurse Specialist, Samantha Westbrook then focused on peritoneal mesothelioma. Samantha discussed what it is, managing symptoms, accessing specialists and enhancing the patient experience.
We then heard from Daniel Murphy, Professor of Lung Cancer & Mesothelioma at the University of Glasgow, talking about ‘Insights from the biology of mesothelioma towards early diagnosis and new treatment options’.
Dean Fennell, Professor of Thoracic Oncology and Director of the Leicester Mesothelioma Research Programme presented an update on treatment and trials, focusing on immunotherapy, chemotherapy and targeted therapy.
Next up was a session on ‘Palliative Care – What, when, why and how’ with Dr Luke Feathers, Palliative Medicine Consultant. Luke looked at improving comfort, dignity and quality of life for patients and their loved ones.
Mesothelioma UK Clinical Nurse Specialist, Simon Bolton outlined the Improving Research Access for Mesothelioma Patients (IRAMP) study. The study was funded by the Mavis Nye Foundation and seeks to identify the barriers and facilitators faced by patients with mesothelioma, their carers and healthcare professionals when considering recruitment to, and participation in trials.
Another member of our amazing Clinical Nurse Specialist team, Kate Slaven detailed the Cough and mesothelioma study, exploring the impact of cough on quality of life. Kate’s colleague, Louise Nelson discussed ‘Staying well on treatment’, breaking down several elements including treatment and side effects, the benefits of exercise, nutrition, carers role, travel, prevention and relaxation.
Finally, Clinical Specialist Physiotherapist, Michelle Gibb talked to the audience about managing breathlessness and fatigue.
The charity has come so far
Mesothelioma UK’s Chief Executive, Liz Darlison summarised the work of the charity. She ran through the long journey of the charity, the development of the operations team and trustees group, and growing the “tour de force” nurse network.
Now contributing 450 nursing hours per week to the NHS, Liz stressed that there “would be no dedicated team of mesothelioma nurses without Mesothelioma UK and its supporters”.
Liz also highlighted the charity’s progress across patient and carer courses, information resources, specialist services, the clinical trials app, amplifying the patient voice and the importance of research.
Mesothelioma UK would like to thank all of our speakers on the day, our sponsors Bristol Myers Squibb, the King Power Stadium staff for hosting, our legal panel members for their support, our operations team and clinical nurse specialists for their help with organising the day, and most of all, the amazing patients, carers and family members who attended.