Over the years, the UK Attention Deficit Disorder Information and Support Service (ADDISS) has undertaken several family surveys that give a clear picture of what it is like to live with attention deficit hyperactivity disorder (ADHD). We believe this information is invaluable for anyone drafting guidelines for assessment and treatment. Unfortunately, the National Institute for Health and Clinical Excellence did not include this kind of research in its 2008 clinical guideline on ADHD, but only considered what was already published or what it had itself commissioned. We believe that our role is to bring the reality of the condition to the foreground, and would therefore like to share some of the results of our research in this article.