Getting involved with NICE

News

3rd May 2011

Patient Linda Facey explained how she became involved in helping shape guidelines produced by the National Institute for Health and Clinical Excellence (NICE).

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While most people believe it is hospital specialists, doctors, nurses, and health economists who help shape NICE guidelines, the expertise of patients, carers and the public is just as important.

Linda Facey became a member of a guideline development group (GDG) and worked on the recent ovarian cancer guidelines.

She said: “When I was re-diagnosed with ovarian cancer, a clinical nurse specialist asked me if I would be a representative on the Central South Coast Cancer Network. So I got involved with that and through that I became aware that NICE were looking for patient representatives for the ovarian cancer guideline.

“My role on the GDG was to see if there was a perspective from a patient's point of view.”

Linda felt that the more she became involved, the more her input was valued by the group.

“I am really excited about this new ovarian cancer guideline. I think the biggest difference it will make is to make sure that GPs have a CA125 blood test at their disposal to help improve early diagnosis, and to increase general aware of the symptoms of this cancer.”

Linda would recommend other patients getting involved with NICE.

“One thing that surprised me about the whole process was that the subject of cost didn't come into our discussions other than we had to have an economic analysis on one of the subjects.”

For people interested in joining a NICE committee or working group, there are details on the organisation’s website.