I am mum to two children with Primary Ciliary Dyskinesia (PCD) but I also run the national support group. I got involved in the group when the boys were diagnosed and it has been going for 21 years now. It had been going for 10 years when I became the Chairman. When I became the Chairman we got quite involved with the clinicians who delivered the diagnostic service. What used to happen for the diagnostics was quite a complex procedure. You had to have a Ciliary biopsy: they take a little bit of the nose and they look under electron microscopes to see if they're beating properly and they can then see the structure of the cilia. This was all done in three different hospitals: Leicester, Southampton and the Royal Brompton. It was done with research scientists and research money; if they had the money to do it, they could do it. The professor at the Royal Brompton got involved with us as a support group and said: "we really need your help to see if we can get this service commissioned by the NHS." We helped them get funding from the NHS for the diagnostic service so now we have a proper, fully funded service which means we've got proper labs, proper technicians and proper clinics where children can be diagnosed. This has given the support group the ability to try and spread the word about PCD so that more children can be diagnosed. The average age for children to be diagnosed is four and a half, which is still quite a long time considering that they could have lung disease by then and we're trying to bring that down, but the idea is that if they get diagnosed earlier then they're less of a burden on the NHS when they get older. That's a really big success story: how leadership of this service managed to get patient and public involvement and we're still very involved in the diagnostic service. We make sure they run how they should do, and we work quite closely with the commissioners to make sure that the NHS is getting value for money on the service that they pay for.