Friday 1st July 2016
Mac Voice, the magazine for Macmillan professionals: Summer 2016
Macmillan Lung Cancer Clinical Nurse Specialist Carol Davies presented at the World Lung Cancer Conference in Denver, Colorado. She tells Mac Voice how the opportunity came about, and what inspired her presentation.
What are the aims of your role?
I support lung cancer and mesothelioma patients from initial presentation onwards. I have always had a special interest in supporting people with cancer, and feel open and honest communication is crucial.
What led you to the World Lung Cancer Conference?
Last year I decided to submit two pieces of work to the 16th World Conference on Lung Cancer in Denver, USA. I felt this would be a way to share learning with international colleagues. It was also a really good opportunity to showcase the work we are doing in Wales. The two pieces of work involved a video and a breathlessness leaflet for patients.
Tell us more about the video.
I had an opportunity to be involved in a video telling the story of Norman, a man with mesothelioma, entirely from his viewpoint. My colleague Naomi and I are Macmillan nurses, so we approached Macmillan for advice about making the video. I arranged to meet Norman and his wife, Lynne, to find out what was important to them before the video was filmed.
The video gives Norman’s account of what happened and how it affected him. It was really moving. Norman opened his story with: ‘Hello, I am Norman. I am 68-years young and I am dying from mesothelioma.’
Norman spoke of his shock at being diagnosed and his anger. He had contracted the mesothelioma from his work as an engineer, which exposed him to asbestos. Norman felt his diagnosis had been delayed, with opportunities missed. He emphasised that people should be asked about asbestos exposure at initial presentation.
Norman also spoke about wanting to join a support group, but there were none in Wales for his condition. Norman understood why, because with this type of cancer there is no cure and patients do not survive long. He eloquently described the physical and psychological burden of the disease.
The video has been used as an educational tool for healthcare professionals.
What inspired the breathlessness leaflet?
The leaflet was inspired by our lung cancer patients, who told us they wanted straightforward information to help them cope with this complex symptom. A colleague and I had produced a breathlessness leaflet for patients some time ago. Following the appointment of Lara, a Macmillan specialist occupational therapist, the information was updated and improved. It includes a short explanation about
breathlessness, how breathing works, and accessible tips, including effective techniques to overcome breathlessness and panic attacks.
What happened after you submitted the pieces?
A poster about the breathlessness leaflet was accepted. To my surprise (and initial horror) the video was accepted for an oral poster presentation.
At first, I thought: ‘I can’t do this at such a prestigious conference’. But then I thought about Norman. This was his legacy and it deserved to be heard. That really helped me prepare my presentation and I spent a lot of time thinking about how to do his story justice.
I decided to use a very pictorial presentation to convey Norman’s key points and to support it using his own words. The health board gave me study leave to attend. I am very grateful and would like to say thank you to everybody who encouraged and supported me to get to Colorado.
How did the presentation go and what do you think the audience learned?
My presentation had a powerful impact. I used a picture of Father Christmas while explaining in Norman’s words his decision to postpone his December chemotherapy. He knew this may well be his last Christmas; if it was, he wanted to enjoy it. He said he understood how a person on death row felt, as he had a death sentence and was living it... then he would be gone.
A fellow lung cancer nurse told me experienced professionals in the audience were blinking back tears during my presentation.
I also received other really positive feedback about how powerful and moving the presentation was. I know how proud Norman would be that his story has been told.
The telling of a patient story is a very powerful tool that we all can learn from. Healthcare professionals need to hear patient experiences of the cancer pathway and the impact on people’s lives, so that we can optimise care.
I was very proud to be among a number of National Lung Cancer Forum Nurses representing the UK. It was evident at the conference that our lung cancer nurses lead the way in our holistic person-centred care approach.
Comment from Mat Jones, Clinical Lead for Lung Cancer in Aneurin Bevan Health Board :
‘Carol is a vital and pivotal part of the lung cancer multidisciplinary team at Nevill Hall Hospital. We are very proud that she presented to such a worldwide audience. The audience will no doubt have benefited from her presentation and poster, and taken valuable information and skills back to their own practice, ultimately enhancing care for people with cancer.’