How it all began

  Roy Castle with trumpet  Roy Castle with Professor Ray Donnelly

Images: (Left) Roy Castle, (Right) Professor Ray Donnelly with Roy Castle 

By Professor Ray Donnelly, founder of Roy Castle Lung Cancer Foundation

I will never forget the day or the time. It was a dull, cloudy afternoon on Wednesday 18th April 1990. The meeting started at 4 o’clock. I was sitting in my office at the Cardiothoracic Centre in Liverpool with my secretary Sheila Christian and one of my patients, Eric Morris. I had just finished operating and was still in my theatre clothes.

I outlined to them my concerns about the huge problem of lung cancer in the North West of England and about the complete lack of any fundamental research into the disease in our universities and hospitals. I felt we had a great opportunity and therefore a responsibility to make a significant contribution to our understanding of the development of the disease, its prevention and eventual elimination. Lung cancer was present in large numbers in our community and I was seeing up to twelve new cases every week, for most of whom I could do very little.

 I had been thinking about this for several months and the purpose of the meeting was to establish a new charity, wholly dedicated to the study of lung cancer in all its aspects. I set out the objectives of the charity in research, patient support and smoking prevention and these have remained virtually unaltered to this day. Considering we had no money or institutional support, our aims were very ambitious. We called the charity the Lung Cancer Fund.

From that first formal meeting we made rapid progress with support especially from my patients. The media in Liverpool supported us from the beginning and we were launched publicly in 1991 by Ken Dodd in front of 200 business men and women. The same year we launched on the Isle of Man.

We raised enough money to begin funding research in the University of Liverpool, to appoint a Schools Liaison Officer and to appoint the first ever lung cancer support nurse.

Towards the end of 1991 I carried out the first removal of a lung cancer by keyhole surgery and this brought us international publicity which helped our status and fund raising.

In 1993 I put together my ideas for an international research facility in Liverpool and it was then that we went to Roy Castle and asked for his help. His response was magnificent and, although he was dying, we arranged a Tour of Hope by special train around the UK which raised over £1m in three days during July 1994. I have written extensively about Roy in my book, Cinderella Cancer. His contribution to our development cannot be exaggerated.  He was with us for only eight months but in that time he captured the hearts of the nation. He is still very fondly remembered.

After Roy died I proposed to the trustees that we should put his name on to the charity and so we became the Roy Castle Lung Cancer Foundation.

The Centre was finished in 1997 and in the same year we took our message around the world, visiting four continents and many major cities, interacting with doctors, scientists, politicians and media wherever we went. The highlight was a meeting with Nelson Mandela. We had the FA Cup with us on the tour and he was delighted to hold it over his head.

The same year we took the Foundation to Glasgow, my home town, establishing there our patient information and support office. What great things they have done since then, so that we are now the largest supplier of information and literature on lung cancer to the NHS and have developed over 50 patient support groups across the UK. From our Glasgow office we now also run the Global Lung Cancer Coalition, an organisation which embraces over 30 lung cancer associations in 20 different countries.

In 1999 we had our first major upset. Our chief executive had to leave over an issue related to expenses and this brought a full investigation by the Charity Commission. It was a very difficult time but we came through it considerably strengthened as a charity and have not looked back.

The objectives of the charity had never been compromised and we continued to host international meetings of scientists interested in our work of early diagnosis research. A professor from the USA went on BBC TV and said that the Roy Castle Foundation was leading the way.

By now we were funding six support nurses around the country but they were proving too expensive to maintain and were passed on to the local health authorities. We had originally hoped to have Roy Castle nurses in every cancer centre. We were nothing if not ambitious!

Liverpool City Council, on our initiative and part funding, appointed a Smoking Prevention Officer (another first) and a tobacco abuse working party. We continued to work closely with them, particularly in campaigning for a smoking ban in public places. Through Roy Castle we had brought the whole issue of passive smoking to the national consciousness and eventually it was one of our own trustees who introduced a Bill into Parliament which eventually led to Government legislation. This was one of our proudest moments.

We are hoping for another of these moments when lung cancer screening becomes available. Based on the results of the research which we have been promoting for over fifteen years a pilot trial is now taking place. This was only a pipe dream when I started out but it is beginning to look possible.

Our hope for the future is, of course, that the cure will be found. In the meantime we must aim to improve survival rates by screening of high risk individuals and new therapies to arrest the development of lung cancers found by early detection. Smoking prevention remains important and our very talented Fag Ends team has helped thousands of people to stop smoking with their especial way of working. The care and support of those afflicted by this devastating disease will always have great importance in the life of this unique Foundation.

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