National Institiue for Health and Clinical Excellence

Annual Review - 2009/2010

Nobody knows a disease more intimately than someone who has had it for many years

Putting patients at the heart of NICE guidance

NICE’s Patient and Public Involvement Programme (PPIP) is committed to working with patients, carers and the public to produce guidance that reflects their views and meets their health needs.

Patients, carers and the public can get involved in NICE’s work in many different ways, including sitting on the groups and committees that develop guidance, joining the Citizens Council and suggesting topics for NICE to look at via the NICE website.

Over the course of 2009/10 the PPIP provided direct support to more than 140 individual patients, carers and members of the public involved in NICE’s work. In this past year alone the PPIP facilitated the recruitment of 51 new lay people to NICE’s standing committees and guidance development groups.

Victoria Thomas, Associate Director of the NICE PPIP, explains why patient involvement is key to NICE’s work:

“Patients can often provide NICE with information about a procedure or treatment that’s not captured in the research evidence. For example, in December 2009 we issued interventional procedures guidance on the total replacement of the jaw joint. Patient advisers working with NICE on this guidance told us that the procedure had improved many day-to-day activities that they considered to be important, including speaking, singing and kissing. It’s so important that we take this kind of personal feedback into consideration when producing guidance that affects people’s lives.”

NICE also produces versions of all its clinical guidance for patients, carers and the public. In early 2010 the PPIP launched a new website page which allows people to search through the lay-friendly/plain English versions of all NICE guidance in a simple clear way.

At the British Medical Association Patient Information Awards 2009, the patient version of the NICE clinical guideline on stroke received a commended award, and the patient leaflet on ‘Stent insertion for bleeding oesophageal varices’ received a highly commended award for its clear and concise treatment of the subject.

Find out more about NICE’s Patient and Public Involvement Programme, and how to get involved, on the NICE website

A patient’s perspective on guidance development

Alison Lister shares her thoughts on being part of the group that developed the coeliac disease guideline (published in May 2009).

How did you get involved with the guideline development process?

“I was diagnosed with coeliac disease in 2007 and also have two sons with the disease. While looking on the NICE website for information on the condition I came across a notice asking for patients 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 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 to have lay members on the 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.”