Thursday 20th June 2013
Lindsey Fitzpatrick, Macmillan Lung Cancer Clinical Nurse Specialist, on the Coventry Roy Castle Lung Cancer Support Group.
In 1999, nurses at University Hospitals Coventry and Warwickshire NHS Trust identified a gap in support for patients with lung cancer. The nurses produced a short questionnaire and sent it to lung cancer patients who attended the oncology clinic. It asked patients what support they felt they received, what levels they needed, and if they would attend a support group just for people with lung cancer. The responses suggested that a support group was needed and would be well attended.
Following discussions with the Roy Castle Lung Cancer Foundation, the Coventry Roy Castle Lung Cancer Support Group was set up. The first meeting took place in November 1999 and feedback on the day was quite positive. Many of the patients attended subsequent meetings.
All patients who have been diagnosed with lung cancer are invited and encouraged to attend. Family members are welcome too. Generally, patients say they come away feeling that they are not alone, with an understanding that others have the same disease, undergo the same treatment and face similar problems. With lung cancer, the media often stresses short survival times following diagnosis. Yet, we have patients who have been attending the group meetings for several years, and newly diagnosed patients who find meeting them a very positive experience.
We address various needs at the meetings. The nurses may give a talk on managing anger or breathlessness, or get people to do relaxation exercises. We’ve had many speakers over the years, including Macmillan and Citizens Advice Bureau representatives, oncologists, complementary therapists and a pathologist who brings resected specimens with him, which always goes down well, as patients appear to be interested in what their cancer looks like.
We often allow time for patients to talk about issues that concern them, while other members of the group listen and offer helpful advice. The group has changed many times over the years, but the feel remains positive and, sometimes, jovial. Some good friendships have developed.
Philipa’s positive gain
‘The support group is exactly how its described,’ says group member Philipa. ‘I initially went because I felt very isolated after my diagnosis and surgery. I met people in a similar situation to me, who understood how I felt and were able to offer me help and support. The group offered me a positive way to gain reassurance in a relaxed and friendly environment.
‘We offer each other support and are able to give positive feedback to new members who may be feeling vulnerable. I know that if I have worries or concerns, the nurses are always there to talk to, whether at the actual meetings or on the phone. Their support is invaluable to us all.
‘I have made good friends in the group. We laugh, we cry and we support each other. I know how important the group is, not only to me, but also to many other people.’
Email Lindsey Fitzpatrick, Macmillan Lung Cancer Clinical Nurse Specialist, University Hospitals Coventry and Warwickshire NHS Trust.