Ed’s Blog – from NACFC - 11 October

So the 26th North American CF conference is underway.

It's being held in a vast conference centre in Orlando - and brings together 4,000 clinicians, researchers and others to hear the latest advances CF research and clinical care.

It’s hot here - but I don't want you to think we are seeing much of it. There are loads of important workshops to attend and people to see.

I am blogging from a meeting sharing ideas from CF centres in the US to improve health outcomes for those with CF. Some great ideas around improving adherence to treatment and targeted work focused on those who are showing a decline in lung function.

We have just heard a presentation from our own Great Ormond Street, about their "Frequent Flier" research programme. This explores how more intensive exercise can help improve outcomes for sickest children. The work showed promising results and shows how important regular exercise is to improve wellbeing of people with CF. I am very keen to explore how we, the Trust, can help encourage all individuals and families touched by CF to put exercise at the heart of their treatment regime.

One of the key issues that keeps coming up in introducing methods to improve the quality of clinical care, is the importance of involving patients and families in shaping them. This is vital, and what should be at the heart of any changes being made by CF centres in the UK.

Of course, people with CF are the key group that are not present at this conference because of cross-infection policy, but patient feed back is absolutely crucial.

I hope our blogs over the next few days can help make up something of this gap!