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A patient's perspective on developing the coeliac disease guideline

meetingWhy I am involved....

Alison Lister was a lay member of the programme development group that produced guidance on coeliac disease, published in May 2009.

She was diagnosed with the disease a year before getting involved with the NICE guidelines and has two sons who also have coeliac disease.

So how did you get involved with the guideline development process?

I was looking on the NICE website for information on coeliac disease when I came across a notice asking for members to help develop a guideline on this disease.

I don't have a medical background, so when I applied I never expected to hear anything more. But the following week I was offered an interview and ultimately a place on the guideline development group.

What were you able to add to the process?

I particularly wanted to ensure the guidance focused on helping three groups of coeliac sufferers; people with atypical symptoms who are more likely to be overlooked or misdiagnosed, people with negative blood tests which many doctors automatically interpret as evidence of a lack of coeliac disease, and people whose physical symptoms are incorrectly attributed to learning disabilities.

What was it like to be a lay member of the guideline development group?

The experience was brilliant, terrifying, rewarding and frustrating in equal measures!

I am very glad I took part and would urge anyone who has experience of their own illness, who has the time to devote to meetings and do the background reading, to step forward now, because they really can help NICE to make a difference.

How important is it for NICE to have lay members on the guideline development group?

Nobody knows a disease more intimately than someone who has had it for many years. I think the presence of lay people also helps ground the proceedings a bit: patients and carers know when what's being proposed will be impractical for some people and can make better suggestions.

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This page was last updated: 31 August 2010

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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.