Professor Michael Barry:

Absolutely, there is work to be done. The establishment of the rare diseases committee speaks to and acknowledges that. I was struck by the fact that in our first meeting with patient representatives they wanted basic information on how the system works. When one works in the system, one takes such knowledge for granted. The meeting was very helpful and we spent quite a lot of time explaining how the system works. They came back a week later to present on their particular area, namely, spinal muscular atrophy. The Deputy is correct that we need to engage in more such work and we will do so.