Patient experience: the power of story

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Carol Davies is a Macmillan Lung Cancer Nurse Specialist at Nevill Hall Hospital in Abergavenny. In 2015 she successfully submitted to, and presented at, the prestigious World Lung Cancer Conference in Denver, Colorado. Carol’s pictorial presentation told the story of her patient Norman and the physical and psychological burden that cancer had on Norman and his family’s life. Carol told Norman’s story very powerfully – making even the most hardened professionals in the audience blink back tears.

What are the aims of your current role?

I support lung cancer and mesothelioma patients from initial presentation throughout the duration of their disease.

What led you to submit some of your work to the World Lung Cancer Conference and how did you get to Colorado?

I decided last year to submit two pieces of work which I thought would be useful for lung cancer colleagues around the world 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.

Tell us more about these two pieces of work

I had an opportunity to be involved with the interview and video telling a patient’s story entirely from their viewpoint. My colleague Naomi and I are Macmillan nurses; so we approached Macmillan for advice about how to go about making the video.

I arranged to meet Norman and his wife, Lynne, to find out what was important to him and what he wanted to say before we made the video itself.

Norman had some very powerful insights and had specific points he wanted to get across and knew exactly what he wanted to say.

What Norman said during the interview was entirely his take on what had happened and how it affected him. It was really moving, especially as Norman opened his story with: “Hello, I am Norman. I am 68-years young and I am dying from mesothelioma.”

He spoke of his shock at his diagnosis and his anger. He had contracted the mesothelioma from his work as an engineer, which exposed him to asbestos.

Norman’s felt his diagnosis had been delayed with opportunities missed. He emphasised that patients should be asked at initial presentation about asbestos exposure.

He spoke about wanting to join a support group but there wasn’t any in Wales specifically for his condition. Norman understood why, because with this type of cancer there is no cure and most patients do not survive long.

He described eloquently the physical and psychological burden of this disease and the impact it had on his and his family’s life.

The video has been used as an educational tool for healthcare professionals.

The second piece of work was a breathlessness leaflet for patients. This was inspired by our lung cancer patients saying there was a lot of information about this symptom. The problem they identified was that they did not feel as though they were able to wade through it all; they asked for something straightforward to help them cope with this complex symptom.

What happened after you submitted the two pieces?

CAROL DAVIES, ABERGAVENNY, 21/03/2016

The breathlessness poster was accepted. To my surprise, shock and initial horror, the patient story was accepted for an oral poster presentation.

Initially  I thought “I can’t do this!”  But then I thought about Norman – this was his legacy, and it deserved to be heard.

The fact that it was Norman’s story really helped me prepare the presentation.  I spent a lot of time thinking about how to do his story justice.

I decided to use a very pictorial presentation to help me get across Norman’s key points and support it verbally with his own words.

How did the presentation go and what do you think they learned?

The presentation went well and was well received. I had to send a copy of the presentation before the conference and the pre-presentation feedback was that my slides were very picture focused.

However, when I delivered the presentation, it had a powerful impact.

I used a picture of Father Christmas to explain in Norman’s words why he decided to postpone his December chemotherapy. He knew this may well be his last Christmas; if it was, he wanted it 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.

I was told by a lung cancer specialist nurse colleague that hardened professionals in the audience were blinking back tears during the 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 what the patients’ experience of the cancer pathway is, and the impact it has on their lives so that we can optimise care.

If you have any questions about cancer talk to our Support Line on 0808 808 0000 (open Monday to Friday 9am to 8pm) or visit our website www.macmillan.org.uk for information and support.

 

 

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