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Putting patients at the heart of NICE's work

8040969-article-lindafaceyAsk someone to describe the sort of people who sit around the table when NICE develops its guidance, and typically the answer will comprise of hospital specialists, doctors, nurses, and health economists.

While all of these experts play a major role in shaping our recommendations, the expertise of patients, carers and the public in the development of NICE guidance is just as important.

By working with patients, voluntary organisations and the public, NICE aims to produce guidance that reflects their views, meets their health needs and addresses patient and public issues.

Linda Facey, a patient who worked on the recent ovarian cancer guideline, explains how she got involved with NICE and describes her experience of being a member of a guideline development group (GDG).

“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.

“I had a look at what was being proposed and thought to myself this is really interesting and actually nearer to the sort of work I was hoping to do when I joined the Cancer Network.

Patient perspective

“My role on the GDG was to look at anything and everything, and see if there was a perspective from a patient's point of view.

“I got myself involved in several of the topics and read all the information around them. I had to say to myself, don't worry too much about understanding every medical detail, just think about whether it impacts on how a patient might be treated, and how they are feeling.

“It gives you the chance to air your views in meetings and explain how patients get on with their treatments away from the clinical setting and out in the real world.

“It was really nerve-wracking walking into the guidance meeting on the first day as I was thinking I'd be in a room with people who are much, much cleverer than me.

“But the more I got involved - and this group was great as they seemed to value me from the moment I stepped foot in the room - the more they made me feel at home and offered room for me to say things.

“A space on the agenda was left specifically for patient issues. This was great for me as it felt like I was the most important person in the room. It was particularly noted if I wanted to make a point, and I was brought into the discussion.

Better care for patients

“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.

“I was diagnosed with irritable bowel syndrome (IBS) as the first thought in relation to my symptoms. But when you look at my symptoms which included bloating, abdominal pain, feeling full quickly and needing to urinate more often or more urgently, they are the ones that we are talking about in this guidance.

“I was eventually offered the CA125 test but only after several weeks, during which time I was getting severely poorly.

“This guideline brings the blood test to the forefront. We are now saying why not do this simple blood test to see if cancer is a possibility. Maybe women will get treated sooner rather than going back and forth, back and forth.

Crucial that patients are involved

“Overall, I'd highly recommend to other patients to get involved with NICE. I think it's absolutely crucial that patients are involved in all pieces of NICE guidance.

“I think at some point everybody saw things from a different point of view because of something I said. Sometimes, something I didn't even realise I had said!

“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. This is interesting given the stereotypical image of NICE as a cost control organisation.

“There was nobody in the meeting saying you can't say that because that will cost too much money. The group were left to decide according to the evidence that we read what our guidelines should say.”

NICE has developed a section of the website dedicated to patients and the public, which includes a list of current vacancies for people who are interested in joining a NICE committee or working group.

28 April 2011

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Accessibility | Cymraeg | Freedom of information | Vision Impaired | Contact Us | Glossary | Data protection | Copyright | Disclaimer | Terms and conditions

Copyright 2014 National Institute for Health and Care Excellence. All rights reserved.