Life as a NICE lay representative

NICE involves patients, carers and other members of the public in many facets of its work. We asked one of our most active contributors, Susan Bennett, to discuss NICE and her work as a lay representative.

Q: In what capacity are you involved with NICE?

A: Currently, I'm a lay member of the Interventional Procedures Advisory Committee and the pilot Patient Safety Advisory Committee.

Q: What first prompted you to get involved?

A: I am a trustee of Incontact, the bladder and bowel organisation. Three years ago, Incontact suggested that I should apply to be a patient representative for the guideline development group (GDG) that was developing NICE's faecal incontinence guideline.

Q: Have there been any unexpected benefits?
A: Being involved with NICE means I've kept my own skills up to date (such as my IT skills) - I had to take early retirement 15 years ago after developing spinal problems. Generally, it has boosted my confidence and self-esteem.

Q: What do you feel has been your greatest achievement since getting involved with the Institute?

A: Making people aware of 'diagnostic overshadowing'. This is something that people with long-term conditions or disabilities can face when they develop a new medical problem. Rather than being assessed and treated for the new condition, assumptions are made about their diagnoses, based on their existing condition. For example, continence problems are associated with many neurological, spinal or cognitive disorders. If someone with one of these conditions presents with a continence issue, it is automatically assumed that its cause is related to the existing disorder.

As a result of my input, the problems associated with diagnostic overshadowing were included in the guideline for faecal incontinence.

Q: What has been your greatest challenge?

A: Overcoming my own disabilities, especially my hidden ones such as chronic neuropathic pain, to attend meetings.

Q: What impact do you think your work as a lay member has had on the committees and guideline development groups you have been involved in?

A: I have helped raise awareness of patient and service user views as well as disability and equality issues.

Q: What advice would you give to someone who has decided to join NICE as a lay member on one of its committees or guideline development groups?

A: Always remember, you are an equal team member. You are the member of the GDG who has knowledge of living with a condition 24/7 - most professionals only know about the condition. On other committees, your role is more about highlighting issues that are important to people who use NHS services and making sure decisions are fair and safe from their perspective. Having a good understanding of medical and research terms in the related area is very useful.

Q: How can NICE better encourage and support lay members who want to work with us?

A: People with long-term conditions or disabilities may have concerns about coping with the travel and meetings. It's important that NICE makes it clear that it will address these problems and meet most other relevant support and training needs.

Q: Finally, how do you think NICE could improve its ways of working?

A: The way cost effectiveness is calculated must be more open, easy to follow and take account of quality of life issues that matter to people with the condition and their carers or family. In addition, as health and social care is now coming under one umbrella, cost-effectiveness calculations must consider social care costs. Also, better designed quality of life measures must be found.

The Patient and Public Involvement Programme would like to extend its thanks to Susan for her participation in this interview and for her continued work on NICE committees.

For further information on how you can get involved in NICE's work please visit our website.