Speech given by Dr Simon Robertson, Consultant Paediatrician at the RD&E at the Launch July 2007

Extract of speech by Dr Simon Robertson, Paediatric Consultant at the RD&E at the launch of the EDCF Quality of Life Fund, The Devoncourt Hotel, Exmouth, Devon on Saturday 14th July 2007

“I would like to say a few words about Cystic Fibrosis and the effect it has on children, adults and their families and friends.

As all those of us who look after people with CF know the condition does affect all those who come into contact with the problems.

The children and adults with CF bear a great burden.  They have to look after themselves on a daily basis to prevent and limit the problems of chest infections and poor nutrition.  They are constantly reminded they have a medical problem and I imagine this must be difficult to deal with at times.  We all know that at every  meal they are reminded they need medicines to help digest food, they need to eat as much as they can, and take vitamin supplements to stay fit.

Then there is physiotherapy and exercise twice a day along with nebulised medicines to help clear thickened secretions from the lungs.

On top of this, antibiotics and a range of other treatments – on average ten medicines or treatments a day.

All of us know that life is busy enough, but to add the burden of all these treatments every day of the week it is quite a significant stress, not only on the child or adult with CF, but also on those who care for them.  I belileve this burden is greater for CF than any other disease I know about.

The other major stress that those who are not familiar with the condition will not know about is the isolation that happens in CF in a way that is different from all other conditions due to the risk of cross infection of chest bugs that may be resistant to antibiotics.

In the past there used to be support from fellow CF patients, who could share and understand the stresses each other faced better than anyone elses.  Unfortunately this can no longer happen – or at least not face to face, but with new technology and resources we hope we may be able to address this.

The EDCF Quality of Life Fund has already been extremely successful in fundraising.  The team have highlighted – as Denise has already said – some areas to improve quality of life.  Buying quieter more efficient nebulisers can reduce some of the time required for treatments.  The use of web cams and access to IT connected to the internet can readdress and strengthen communication and camaraderie between CF patients in the area to offer help and support.

All this requires money.  The immense energy and drive of those setting up and launching this new local charity must be applauded.  How these parents of children and adults with CF stillhave energy and time to support other families is unbelievable.

I hope their energy and drive continues, then their aims to improve the quality of life for patients and families will help to be met to minimize the impact CF has on all their lives.  We in the medical team wish you the bests of luck and look forward to helping where we can.”