16th April 2020

Changing the narrative

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Having had enough of the poor outlook and attitude towards people with lung cancer, Professor Ray Donnelly decided to do something about it. In 1990, he founded our charity and gave people with lung cancer a long-awaited beacon of hope. Professor Ray Donnelly looks back on that day in April 1990 and recalls some the charity’s greatest achievements.

“There were so many negative attitudes towards lung cancer. Lung cancer patients were at the bottom of the list. They were denied investigation. If there was a suspicion by the GP that a patient had lung cancer, they did not refer them to hospital.

I remember speaking at the Labour Party conference in Bournemouth and I met a member of the Parliamentary Health Committee. He was a GP and I said, ‘We should have much more emphasis on lung cancer’. He replied, ‘Why? They all die, don’t they?’ That’s how bad things were.

I was working as a thoracic surgeon at the time in Liverpool. I would see around 10 patients with lung cancer every year, but only one or two would be suitable for surgery – and at that time surgery was the only hope for cure. There was virtually no chemotherapy, and radiotherapy was mainly used for symptoms relief, never cure, so the outlook was very poor.

The problem was late diagnosis, so it was blindingly obvious to me that we needed research into early detection. There was none in this country, and very little anywhere else in the world.

I put together a proposal for a senior research person in lung cancer. It was approved by the University of Liverpool, but they wouldn’t fund it. It was approved by the hospitals, but they didn’t have any money. I made an application to the British Lung Foundation, but they turned it down. So, I decided to do it myself.

Point zero

We had no money, no patrons, no corporate support, nothing, but I knew we had to try.

We raised enough money to begin funding research in the University into early detection, appointing Professor John Field to the role. We also raised money to help prevent and stop people from smoking, including children.

We began to provide support for patients, appointing the first lung cancer support nurse. Before that, patients would be told ‘You have lung cancer’ and had no one to talk to. Quite often, they received their diagnosis and then had to leave, get on the bus, go home and wait to hear what happens next.

Lung cancer nurse specialists

I thought it was much more humane to have someone sitting in the clinic who could then go out into another room with the patient and their family and make sure they understand what is happening and have someone to go to if they have any questions.

In1991, I performed the first lung cancer keyhole surgery. It attracted huge support; BBC, Sky News, they were all in the operating theatre. Finally, the world was starting to focus on lung cancer and the fact that it could be cured – but only if it was caught early.

It was then I started to have the idea to build a lung cancer research centre. It was going to cost around £12million, so we were going to need something – or should I say someone – special.

Enter Roy

I approached Roy with my plans. He was quite poorly at the time and, because of that, he said he couldn’t do much, but we could use his name. However, Roy being Roy – the generous, kind, wonderful man that he was – he did so much more.

roy castle tour of hope

We organised for him to go on a train around the country – the famous Tour of Hope. By this point, he was very ill. He had discharged himself from hospital the day before, against the advice of his consultant. He hadn’t eaten anything for three weeks; he could barely drink because the glands in his chest were pressing on his oesophagus, but he wanted to get on that train.

But no one would have known just how ill he was because as soon as his foot hit the platform, he greeted the crowds with that big beaming smile. That was Roy to a tee. He was dying of lung cancer and yet he put himself out to try and stop other people suffering what he was suffering. He was the most remarkable man, for whom I have the greatest admiration and respect.

Roy died two months later but his legacy lives on. He catapulted lung cancer into the national consciousness. Even after he died, the money continued to pour in, and we built the research centre. We owe him so much and so it was only right that we renamed the charity in his honour.

Building on Roy’s legacy

It’s hard to begin to talk about the achievements of the charity – there are so many. From our pioneering research which we are now seeing come to fruition with the rollout of targeted lung health checks, to the smoking ban, first in public places and then in cars, and the long-term impact that is now having on people’s health.

With the help of so many people, not least Roy Castle, we have come a very long way, but the journey is far from over. We want a national lung cancer screening programme. We have been calling for that for many, many years and the promise of one is now on the horizon.

We need to continue funding research into early detection because as impactful as screening will be, it will by no means provides all the answers. It will not save everyone. But I have no doubt we’ll get there.

After all, I founded the charity in the face of opposition, the face of negativity, the face of hopelessness. Now look at us!

When we started, lung cancer was bottom of the pile. It’s now receiving the second highest amount of research funding.

When we started, only 17% of people diagnosed lived for a year or more. Thanks to earlier detection and new life-lengthening treatments, more people are living well and living longer with all stages of lung cancer.

And when we started, there were no stories to tell. For the last 30 years, we have been the voice of people with lung cancer. By sharing their stories just like Roy shared his, we are giving hope to someone else who has just been diagnosed. That’s something to be very proud of.”

Can you help?

What should be a year of celebration however is now one of grave uncertainty. With events cancelled, shops closed and the charity ineligible for Government funding, we are now faced with one of, if not the most, threatening situations in our history.

Our charity has faced opposition. We have faced negativity. We have faced hopelessness. But with the help of so many, not least Roy Castle himself, we not only survived but thrived. But in order to thrive for the next 30, we need to survive the current situation.

To mark our 30th anniversary, we have set up a fundraiser on Facebook and are asking people to donate. Then we can continue to fund life-saving research. We can continue to campaign for life-lengthening treatments. We can continue to provide essential support, and hope, to people living with lung cancer.”