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.

In their own words: The stars of '...the rest is up to me'

Yesterday we released ‘…the rest is up to me’, a film we made about teenagers with cystic fibrosis. They spoke in their own words about cystic fibrosis and how it affects their lives.

We asked some of the teenagers why they took part in our film and what they hope it will achieve:

Holly Van Geffen

When I tell people I have cystic fibrosis their immediate reaction is “You don’t look ill”. They’re right, from the outside I don’t, I look normal, but the inside of my body tells a very different story. My ‘normal’ appearance is one of the reasons raising awareness of cystic fibrosis is so hard and why when I saw the opportunity to be in this film I jumped at it!

Most of my treatments go on behind closed doors, it is rare that people get a full insight into the everyday routine we have to carry out to ensure we look as ‘normal’ as we do. I hope this film opens people’s eyes to how difficult living with cystic fibrosis is and how much determination and strength it takes to carry on the fight. My life motto is ‘always have hope’, and I am always hoping for improvements in treatments and one day, a cure.

Ben Witham

I hope this film makes people aware not only of what cystic fibrosis is like for teenagers but also for what it is like for everyone else with cystic fibrosis, regardless of age. It's a great way to make people aware. I wanted to take part in the filming for many reasons and doing so for a charity that I was a part of was even better. I feel cystic fibrosis isn't a widely recognised condition, even though it's fairly common and the Cystic Fibrosis Trust isn’t that well known. That was why I wanted to take part in this, more people need to be made aware of cystic fibrosis and the work the Trust does. They do a really good job.

The Trust has helped raise awareness as well as provide support for people like me and when it’s just a small amount, I'm happy with that, that's the best part of it (as well as being filmed, that was fun too).

Cicely Matthews

I really enjoyed doing the film, it's great to know this will help raise awareness of cystic fibrosis. I'm very excited to show it to my friends as I finally have an answer to the 'What is CF?' question: I can just let them watch the video and all will be answered! I think they may be in shock about how much stuff I have to do and what I have to go through. As much as they try to understand I don't think they ever really imagined how much I have to do. It will finally feel like a weight off my shoulders and I won't fear the 'What is CF?' question any more.

Jordan McKinlay

"I’d originally approached the team for this film hoping to gain knowledge in the media aspect of theatre. Theatre is very important to me, particularly sharing stories about CF; and I hope to one day create my own work – with my own company. I hope that other CF patients, like me, will find this a relief in some sense; so that their friends will be able to understand fully all the different ways different patients are affected. I’ve always been treated as an average person by friends and family, and I hope this film will teach others that that’s the way we want to be treated: just like everyone else."

Holly, Ben, Jordan and Cicely are just three of the thousands of teenagers with cystic fibrosis, each with their own lives and their own story to tell

We want you all to share your story, too.

If you’ve been inspired by ‘…the rest is up to me’ we’d love it if you could do your own short videos about your own experience with cystic fibrosis. Upload them to YouTube, share them on Twitter with the hashtag #cfteens and we’ll collate them all on our YouTube channel.

They can be as short as 10 seconds, but please no longer than three minutes! And film them on your mobile, camera, however – it’s what you say about your own experience that is important.

We’re shouting loud about cystic fibrosis and with your voice, we’ll be shouting even louder.

Why we made ‘…the rest is up to me’ about teenagers with cystic fibrosis

Jacqueline Ali, Head of Information,
Support and Conferences,
Cystic Fibrosis Trust

Sometimes the Cystic Fibrosis Trust is perceived as an organisation that just exists to help parents of children with cystic fibrosis, rather than people who have the condition themselves, but that is not the case. It is important that we provide information and support to everyone affected by cystic fibrosis, whatever their age.

The aim of ‘…the rest is up to me’ is to show young people with cystic fibrosis that they aren’t alone; that there are lots of other young people dealing with the same issues they have (over 2,000 in fact!) and juggling the demands of cystic fibrosis and treatment with education, work and a social life. Cross-infection means cystic fibrosis can be isolating, and film is a great medium for overcoming this; we can show young people with cystic fibrosis in their every day lives. We also wanted to reach out to young people who don’t have cystic fibrosis, to help them better understand the condition and how it could affect someone they know.
Most importantly, we wanted to make a film that really represented young people with cystic fibrosis, and we got a fantastic range of responses when we put out the call. It was hard to try and include everything, but some key themes did emerge. From the feedback, it was clear that we had to strike a balance between presenting a positive message to young people, whilst not shying away from the more serious aspects of the condition. Showing young people with cystic fibrosis living life to the full and discussing the various issues in their own words enabled us to do this.

We hope that you will be inspired by the six young people in the film. Each of them has a very different experience of cystic fibrosis, but they all have one thing in common: as Holly says at the end of the film, while cystic fibrosis is definitely part of their lives, it doesn’t stop them living life to the full. The rest is up to them!

Please do let us know your thoughts on ‘…the rest is up to me’ by leaving us comments on YouTube or over on Facebook and Twitter. We’ll be following up this blog tomorrow with the experiences of some of the stars, so stay tuned.

As well as our fantastic actors and everyone that auditioned and provided suggestions for the script, we are very grateful to Genetic Disorders UK the charity behind,  Jeans 4 Genes Day, which provided the funding for us to make this film, and of course the production company Once We Were for putting it all together. We would also like to give special thanks to Mandy Bryon, Consultant Clinical Psychologist at Great Ormond Street, and Sejal Patel, Clinical Psychologist at Barts Health NHS Trust, for their helpful input on the script, and to Great Ormond Street for allowing us to film in the hospital.

Introducing Oli Rayner

Oli Rayner speaking at the launch of
our research strategy at the Wellcome Trust

When Formula 1 teams like McLaren or Ferrari design and test a new car, they need lots of input from their drivers. When it comes to designing and testing new cystic fibrosis treatments, we are the drivers and we need to speak up.

Over the next six months, I will be working as the Cystic Fibrosis Trust’s Special Adviser on Research and Patient Involvement. It is my job to enhance the involvement of people with cystic fibrosis in research in line with the Trust’s five year research strategy.

Why get involved in research?

We know much more about cystic fibrosis and how to treat it than when I was born in 1975. Survival has improved dramatically and people with cystic fibrosis are able to live much fuller lives. Most of the advances have resulted from research. 

There are many different types of research, including clinical trials. No drug can be licensed without robust data from proper clinical trials but a persistent shortage of volunteers slows progress.

Studies that don’t involve a new drug can be just as important in teaching us how to use what we have more effectively or revealing new things about the disease.

Currently in the UK, only about 50% of trials meet their recruitment targets and only around 10% of people with cystic fibrosis participate in clinical trials. Patients pay the price for under-recruitment because it means fewer treatment options.

We want to see research embedded in the culture of all cystic fibrosis clinics. This will encourage us all to think about how we can do things better in the future and how we can use the tools we already have more effectively.   

With potentially transformative treatments in the pipeline, increasing knowledge of the genetic and molecular basis of the disease and unprecedented commercial interest in cystic fibrosis, this is an exciting time and it is important that we make the most of the opportunities ahead.

As patients we have a responsibility to speak up and explain what is important . Cystic fibrosis is a complex disease and researchers will not necessarily understand what it is like to live with the disease, what is important to patients in the real world or what are the most relevant outcome measures unless we tell them.

What do I want to achieve?

My key objectives are to:

·        make sure people with cystic fibrosis have an easy way to find out what clinical trials are open to them and access to the information they need; 

·        put mechanisms in place to make sure decisions about the commissioning and design of clinical studies take into account the views of people with cystic fibrosis;

·        make sure the community is aware of the projects being funded by the Trust, why they are important and how they fit into the broader strategy; and

·        work with the Trust to establish systems and make better use of technology to engage people with cystic fibrosis and make sure their views feed into every aspect of research.

I will also be helping the Trust with a broader long term initiative to give patients more control over their own care and better tools to manage their own health. We want to make the best use of new technologies to:

·        allow people to manage their own health from home with minimal disruption to life;

·        identify early warning signs so we can take action before things get too bad; and

·        systematically learn what works for individuals and feed this back into the system in a way that helps us see broader patterns.

I will be speaking to a broad range of people in the cystic fibrosis community including others with the condition, parents and carers, clinicians and other experts; and looking at what works well elsewhere.

What do I bring to the table?

I graduated with a 2:1 in Law from University College London in 1998 and, as part of this, I studied Medical Ethics. I then spent 12 years working in investment banking and venture capital, advising fast-growing companies in the media, technology, life sciences and renewable energy sectors.

Recently, I have had to step back from full-time work so that I have more flexibility over my time and can prioritise my health. I currently have a number of roles which each take up small amounts of my time.

Among these is consumer referee for Cochrane’s Cystic Fibrosis & Genetic Disorders Group, which carries out systematic reviews of the evidence available to support current treatments, and author of a regular column on drug development and clinical research for CFUnite.org.

In June 2013, I was selected by Eurordis to attend their highly-regarded Summer School for Patient Advocates in Drug Development, Clinical Trials and Regulation.

This experience has given me the ability to understand and process technical information, think critically, interrogate experts and communicate results in non-technical terms. On top of this, I have my own experience of living with cystic fibrosis and taking part in clinical research.

I am excited about this opportunity and interested to speak to people across the cystic fibrosis community. If anyone wants to contact me they can email me at oli.rayner@cysticfibrosis.org.uk or talk to me on Twitter: @oli_rayner.

Find out more about patient involvement in cystic fibrosis research when Oli joins Janet Allen (Director of Research) and Ed Owen (Chief Executive) for Ed’s Question Time live on our forum at 1:00 pm on Wednesday 11 September.

Employment and Cystic Fibrosis: Jimmy's Journey

Jimmy Gregory shares his story of how, with the help of The Prince's Trust, he hasn't let cystic fibrosis stop him achieving his dream of working in the creative industries.

As a young child growing up in the 1980s I was pretty carefree, getting up to all the kinds of mischief that’s expected of a kid who’s just been let loose on the world. As the 1980s gave way to the 1990s, life began to get serious quite quickly for both myself and my family. I developed a very serious and inhibiting cough which prohibited me from throwing myself head first into all of the childish activities that I’d been so actively involved with before. 

I was in and out of the local doctor’s surgery so frequently that, looking back now, I really feel annoyed that I wasn’t offered some kind of loyalty card! Each time I paid a visit, my parents were told that I was suffering from asthma and that, although the inhalers they had prescribed in the past weren’t working for me, they could prescribe another which ‘should’ alleviate my symptoms. Each time we’d leave and trial the new treatment in the hope that my condition would improve...

...It didn’t.

I was quickly deteriorating and it got to the point that even the short walk to school each morning would become such a chore that I would regularly have to take breaks to catch my breath and on some occasions I would cough so much that I would be physically sick.

It took a long period of going back and forth to the doctor’s surgery before they finally relented and referred me to Leicester Royal Infirmary who took a chest X-ray, saw something was wrong and sent me for the ‘sweat test’ which led to a diagnosis of Cystic Fibrosis. Being a genetic condition, my younger brother was also tested for the disease and although he was not showing any symptoms at the time, he was also diagnosed.

As you can probably imagine, this double dose of bad news hit family life like a sledgehammer to the chest. No parent wants to hear that their child is ill and similarly no child wants to hear that they are no longer ‘normal’. To also find out that you’ll require frequent stays in hospital and that you’re life expectancy has just plummeted, is a pretty bitter pill to swallow as an eight year old child.....and I’ve swallowed plenty of pills in my time.

Despite my condition I’ve always been fiercely independent. I love my parents to bits but as I entered my teenage years I wanted to show them that I could fend for myself and that they could begin to take a step back from their responsibilities. As a result I made a conscious decision to continue my education away from my home town of Leicester. And so I ended up studying Media Communication at the University of Lincoln.

It was here, whilst doing a unit in desktop publishing, that I fell in love with Graphic Design. From this moment, I began to tailor my studies and my extra curricular work towards creative projects. This involved working on some marketing projects for the Student Union, a local charity and also creating a music magazine as part of my final year independent study.

Upon graduating I moved to Leeds to pursue a career in the creative sector and applied for every single design job going. Competition was incredibly high and I received my fair share of rejection letters and emails. To pay the bills, I worked in the correspondence department of a major car manufacturer handling customer complaints. Although I was good at the role, it wasn’t an area that inspired me and so I continued to apply for design jobs throughout. After just over a year of handling complaints, I got what I thought was my lucky break and I accepted an entry level job at a local design firm.

Unfortunately, this coincided with a downturn in my health and I was admitted into hospital within the first few weeks of the role. This, along with a few rookie errors, meant that my probationary period was not extended. This hit me hard and I felt that the creative career ladder had been snatched away from me before I had even had the chance to plant my foot on the first rung. I became quite depressed and once again my health suffered.

This led to me being signed off for around two years, but throughout this period, I never felt comfortable just accepting tax payers' money to cover my rent and to pay for the groceries in my fridge. So I made a pledge to myself that once my health improved, I would return to the workplace. Whether it would be within the design sphere, or biting the bullet and returning to customer service didn’t phase me at this point. I just wanted to get back into the workplace and become self sufficient once again.

It was then that my mum told me about The Prince’s Trust and although I’d heard of the charity, I wasn’t aware that they could offer any kind of support to someone like myself. However, my mother being the stubborn and persistent woman that she is, persuaded me to get in touch and I ended up enrolling on the Enterprise Programme which looks to support those who are considering setting up their own business. The course itself gave me the confidence that I could realise my design ambitions and even if no studio was willing to take the chance on me, I could still go it alone and establish myself as a freelance designer. So upon completing the course I set up Tearaway Studios, my own small and very humble graphic design label.

The first few months were incredibly hard and I would have actually been much more comfortable on benefits. But I took solace from the fact I was now making real steps to realising my dream and getting paid for the thing I love.

Slowly things began to snowball and customers began coming back for more work. I applied to The Prince’s Trust for a business loan which allowed me to upgrade my software and invest in a professional website to showcase my work. That was two years ago and since then I haven’t really looked back.

I’m still running Tearaway Studios and I’ve worked with clients across Europe, Asia, America and Australia. I now also work for The Prince’s Trust as a Job Ambassador on a 12 month contract and my involvement with them has enabled me to meet and speak with HRH The Prince of Wales on two separate occasions, as well as various celebrities including Dynamo and Will.i.am. I’m also about to launch my second business which looks to help the next generation of creatives to break into the industry.

As you can see, it’s a pretty exciting and busy time for myself. CF has always had a profound effect on my life and restricted some of the things that I can do, but I have never let CF rule my life.

(This blog was adapted from a speech given by Jimmy at an event at Harewood House, Leeds to an audience including HRH The Prince of Wales. The picture above shows Jimmy (centre) meeting The Prince of Wales at the event)

CF Week 2013: Ed's Blog

Cystic Fibrosis Trust CEO Ed Owen looks back on an incredible week raising funds and awareness for cystic fibrosis, and the controversial but critical subject of transplantation.





We're into Day 5 of CF Week 2013 and together we've been making a real impact across the UK, which has only been possible because of our amazing supporters. 

Thank you to everyone who has supported our transplant campaign by speaking so eloquently about the difference a transplant makes. By sharing your stories you've enabled us to raise awareness of the issues surrounding transplantation in every BBC and ITV region.

Transplantation is now firmly established as a health concern within the media, at a time when there is immense competition for space and airtime. In many of the media interviews journalists asked about the crucial issue of the shortage of organ donors.

This week we have also been raising awareness of the issues with politicians across the UK, helped by parents and relatives affected by cystic fibrosis, and clinicians.

We met the Welsh Health Minister, Mark Drakeford, during the week to discuss transplantation policy. The Welsh Government is currently considering moving towards a soft opt-out system of organ donation.

And finally, a massive thank-you to everyone who has been fundraising, raising thousands of pounds for the Trust. We've been posting your photos and highlighting your CF Week activities on Facebook, and we really appreciate all your support. We are fortunate to have such a dedicated and committed community of fundraisers who turn out time and again to support our vital work. We can't achieve anything without you, and we are truly grateful to you all.

You can learn more about the human side of transplantation from the films and stories some of our supporters have shared for CF Week.

CF Week 2013: Sam's Blog

Sam appeared in our CF Week campaign in 2011, when he was on the waiting list for a lung transplant. After coming through five years on the waiting list, the operation itself and some post-transplant health scares, he is now enjoying being a teenager and looking to the future.


Hi I'm Sam, I am 14 years old and am one of the feature case studies in this year's CF Week. You can watch my video here.

I was pleased that the topic of CF Week this year is transplantation as this is a theme close to my heart.

I waited for five years for my transplant call to come. I was 13 when my call came and the operation was carried out at Great Ormond Street. When the call came we were blue lighted to the hospital, I remember feeling really excited but really scared at the same time! We got final confirmation of the transplant at 03.00 in the morning.

I was lucky to get my transplant in time and now I'm looking forward to the future. I will be choosing my GCSE options soon; I'm joining in with sports again, going out with family and friends and being a teenager. I can't say it’s been an easy year and we've had some health scares post transplant but I'm here and cystic fibrosis is not gong to stop me.

I am pleased that the Cystic Fibrosis Trust is highlighting the problems for people in getting a transplant in time, and starting a consultation on to how to improve rates of transplant and informed choice for children and adults who find themselves on the transplant list. I hope that everyone gets their call in the end. 

So please get involved with CF Week. I will be doing my own big bounce and there are lots of other ways to raise funds too. Visit www.cysticfibrosis.org.uk/cfweek for ideas and help the Cystic Fibrosis Trust carry on its work to improve the lives of people like me.

Sam x