Tuesday 12th June 2012
In Post Since April 2004
Location University Hospitals of Leicester NHS Trust
Contact Call 0116 250 2615 or email Liz.
What is mesothelioma and how common is it in the UK?
Mesothelioma is a rare form of cancer that mainly affects the lining of the lungs, and to a lesser extent, the abdomen. Although nearly all mesothelioma cases are caused by exposure to asbestos, a small number of cases occur in people with no history of exposure.
There are almost 2,500 cases of mesothelioma in the UK each year. This number is expected to rise by 100–120 a year, and then abate in 3–4 years time. This is because of the long latency period between first exposure to asbestos and the development and diagnosis of mesothelioma, which can be between 15 and 60 years.
Mesothelioma is universally fatal and most of those affected die within one or two years of diagnosis.
What do your two roles involve?
I split my time between Mesothelioma UK, a national resource centre providing specialist information and support, and the University Hospitals of Leicester, where I am based in the lung cancer team.
I am the key worker for people with mesothelioma in the local area, from point of diagnosis to after death. I also offer education and training to professionals, and I attend conferences and lecture regularly.
How was Mesothelioma UK established?
After becoming a respiratory nurse specialist, I developed an interest in mesothelioma. I formed a strong relationship with a nurse specialist called Mavis Robinson, MBE, who was based in an area of Leeds with a high incidence of mesothelioma. With Macmillan’s help, Mavis had set up a mesothelioma information service.
It was with Mavis’s support and encouragement after she retired, that I picked up the reins of the previously Leeds-based mesothelioma information service and started Mesothelioma UK.
In 2004, Mesothelioma UK was given a three-year grant from Macmillan and it became self-funding in 2009.
Tell us about your recent professional achievements
Earlier this year, I was awarded a 10 Year Achievement Award from the British Thoracic Oncology Group for Major Impact to Lung Cancer Patient Care. It’s amazing to be honoured in this way by colleagues and peers.
I am also delighted that the Mesothelioma Care in Practice Course, a joint venture with the Royal Marsden School of Nursing and Rehabilitation and Mesothelioma UK, received a 2011 Excellence in Oncology Award for Best Professional Education Initiative.
The e-learning course is designed to improve the knowledge and skills of nurses and allied health professionals from around the world in the management of people with mesothelioma.
What other projects are you involved with?
Mesothelioma UK runs a community of practice called the Mesothelioma Nurse Action Team through Macmillan’s Learn Zone. The team meets twice a year and has around 40 members.
I also review patient information for Macmillan, coordinate Mesothelioma UK’s annual patient and carers conference, and promote Action Mesothelioma Day, a lobbying day to raise awareness of the dangers of asbestos.
This year Mesothelioma UK ran its own patient experience survey, which had around 650 responses. We are currently analysing the results.
What are the challenges of running a mesothelioma service?
The service is now self-funding, so fundraising is a big challenge. I also feel I have responsibility to ensure the longevity of the service.
I’m very passionate and committed, but I want to develop a workforce not dependent on any one person; one that can share clinical responsibility. Mesothelioma UK is in the process of funding two more nurses who will be based in their local trust, but will take on regional and national responsibilities.
And the service’s successes?
I think the reason for our success, and the influence of Mesothelioma UK, is because the service reflects patient care and need. We feel we are completely patient focused.
What’s the best piece of advice someone’s given you?
When I first got involved with lung cancer, the clinical director said, ‘Lung cancer is very consuming, so don’t forget your work/life balance.’ When you work in an area of high need, you are never done. It can suck you in, so I think that was great advice.
Visit Mesothelioma UK or call their freephone helpline on 0800 169 2409.
We have more information about mesothelioma.
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