Friday, 27 September 2013

Cystic Fibrosis Trust Clinical Conference 2013: Ed Owen's Speech

On 25-26 September we held our annual Clinical Conference in Manchester. For the first time we combined the medical conference for cystic fibrosis clinicians with the exclusive Centre Directors meeting into a two-day event. Ed Owen, our Chief Executive, opened proceedings on the first day with a welcome speech in which he highlighted the close relationship between the Trust and the clinical community, and spoke of the need to better engage the cystic fibrosis community. Here is the text for Ed’s speech:

It gives me great pleasure to open the 2013 Cystic Fibrosis Trust Clinical Conference here in Manchester. It is great to see so many clinicians and health professionals here. This is my first conference as Chief Executive and I look forward to meeting old friends and making new ones today.

First, I want to say “thank you”. On behalf of the thousands of people personally affected by cystic fibrosis, thank you for all of your commitment, dedication and purpose. Here in the UK we are extremely fortunate to have such an extraordinary group of clinical professionals as represented here, working every day to improve the lives of those we are here for.

Thank you also for your support for the Cystic Fibrosis Trust and our work. The partnership between the clinical community and the Trust is a vital one, and has been hard-wired into what we do since our foundation, 50 years ago next year.

This partnership is as important today as it was then; yet it has adapted through that time and needs to continue to adapt as we face new challenges and new opportunities.

I believe there is a fantastic ‘window of opportunity’ for us in the wider cystic fibrosis community today. The developments in transformational treatments has changed the weather and brought global interest in cystic fibrosis never witnessed before. We now have a drug in clinics for the first time that targets the basic defect of cystic fibrosis.

There are other opportunities too, with the changes in health systems in the UK and the rapid developments in technology.

We need to seize this window of opportunity – partly because it will not be open forever, but primarily because it offers a unique opportunity to shape new approaches that will transform the lives of people with cystic fibrosis.

We at the Trust are changing to help us seize this opportunity. We have a new brand to raise more funds and build greater support, better communications and advocacy. And we have a new research strategy focused on impact and leverage.

I believe that a more defined partnership with the clinical community, building on the success of the last 49 years, can achieve great things too.

Together, we can help develop personalised care shaped around the needs and requirements of people with cystic fibrosis to enable them to control a condition that has for too long controlled them.

You can therefore expect us to become more active across our activities as we seek to improve and increase our real impact, and I am pleased to tell you today of a number of initiatives from the Trust which will, I believe, help in that mission.

First, personalised medicine requires better information about genotyping, and I am pleased to announce that we will soon be launching a project to assist clinics in ensuring that they and their patients have complete information about their genotype.

It will start as a pilot project over the next month with support from Vertex Pharmaceuticals to provide testing for a little over 200 people over the next six months. If it is successful, we hope to have a larger project to follow.

The Trust will also soon be announcing a new fund to assist clinicians and health professionals to attend vital conferences. I can confirm that the Trust will be restoring funding of clinical fellowships to ensure that we maintain the flow of clinical expertise in cystic fibrosis care for the future.

Further details of all these projects will be provided on our website over the next few weeks.

Finally, but most importantly, I want to say something about what will be a defining part of our mission over the next period.

A vital component to getting the changes we want is the voice and experience of patients and their families. They have for too long been the silent voice in what we do, and that is the case here today too – although I am delighted that Oli Rayner joins us today. Oli has joined the Trust as an adviser and you are most welcome today.

We all know the issues of cross-infection. But that can no longer be used as an excuse for us. We have to work harder to hear and understand the views, experience and opinions of those with cystic fibrosis and to articulate and promote them in everything we do.

Please bear this vital issue in mind throughout our discussions today. I look forward to your positive and constructive contribution. I hope you are stimulated by the discussions. And I hope you enjoy it too.


If you’d like to know more about what happened at our Clinical Conference, then keep an eye on this blog where we will be posting a round-up of the event next week.

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