1.  I have been active in the field of patient and public involvement in health for a decade, that is to say during the whole of the National Institute's existence. As with the majority of initiatives within the ambit of DH, NICE had a somewhat ponderous start but for the past several years has performed well and certainly to the overall benefit of patients. Though demonstrating some of the collegiate-academic atmosphere that pervades medicine in Britain, it also exhibits a welcome adaptability: recent examples are the shortening of the consultation process for guidelines on the way to issue and the launch of the "Understanding NICE Guidance" series of publications.

  2.  Yet I have no doubt that public confidence in NICE has waned. My evidence is from involvement with patients—I have chaired the British Heart Foundation's patients group since 2003, chaired their national patients conference in 2005 and have frequent interaction locally, regionally and nationally with NHS patients.

  3.  Over the last three years—roughly the period of decline in public confidence—I have been involved in the work of NICE myself, as a lay member of a guideline development group. The contrast is complete: the way that NICE works merits the highest praise; it is an institution of which we should be nationally proud. Having observed the working methods closely and at length I can truthfully say that it is impossible to imagine how they could be improved. And I speak here as a patient as well as a student of organisational performance.

  4.  The one criticism that may merit sympathy on some occasions is of NICE's response time, but here too, I can see no way of doing the job more quickly while continuing to do it as well. (There is one other point of dissatisfaction, that I share, but where blame cannot be laid at NICE's door: how is it that, 300 years after the Act of Union, we citizens of the United Kingdom find ourselves with both a NICE and a SIGN? That is a question the Committee might like to ask itself.)

  5.  What are the reasons for this diametric difference between the reality and the public belief? I think there are two:

(i)  By virtue of its mission, NICE is unusual, perhaps unique, among bodies in the health field in that it can attract only bad publicity; its myriad "good deeds" are subsumed into practice un-noticed.

(ii)  It seems that a section of the press is bent on destroying public confidence in NICE. One is accustomed to the "good news is no news" rule that is general in the media, but we have seen lately a positively malevolent campaign that is causing distress to patients and that comprises editorial matter that amounts to no less than lies.

John Walsh

8 March 2007