Treating cancerin a patient, caring way

Ciarán Devane, who heads the UK's largest cancer charity, knows the disease from every side, writes MARK HENNESSY

CIARÁN DEVANE’S wife, Katy Ashburner, aged just 35, was buried on their fifth wedding anniversary, with her ashes buried in the graveyard in Ventry, Co Kerry, alongside Ciarán’s father, overlooking the sea.

The sarcoma diagnosis had come within weeks of marriage: “So we went from this ‘just married’ thing, to ‘Hey, you’ve got cancer’ to, ‘You’re not going to have kids’,” he told The Irish Times, in his ninth floor office on the Albert Embankment in London.

Devane, a former chemical engineer and management consultant, today heads MacMillan UK, a cancer charity which helps one and a half million of the two million people in the United Kingdom who are living with cancer, as Devane puts it, at any one time.

Soon, McMillan and the University College London Hospitals NHS Foundation Trust will open the UK’s most advanced cancer hospital, following an investment by the charity of £10 million in cash and 100 years worth of experience.

The North London hospital will be designed “around” patients, and not for “institutional efficiency”, with the traditional chemotherapy model where “you sit in a big chair, somebody sticks a big needle in your arm and you sit there for five hours” to be no more.

“We are going to put the drip into a back-pack with a pump and let you go down and have a coffee, or go down to the MacMillan Centre and have a massage, or go watch a movie and then come back and they’ll take off the back-pack,” he says.

“We had the opportunity to say, ‘If we were designing chemotherapy from the patient’s point of view, rather than just what is convenient, then what would we do?’ Why do you need to sit in an expensive piece of real-estate in London?

“The patient doesn’t want that, so the patient wins and the hospital wins. So you will be able to deal with more people in the same space,” says Dublin-born Devane, a nephew of broadcaster, Michael O Muircheartaigh.

Reforms are necessary, indeed vital. In little more than 15 years, the UK will have to deal with four million, not two million cancer survivors: “The story of cancer in the 20th century is that firstly we stopped dying of other things.

“We stopped dying of TB. We started smoking less, so heart conditions improved. So we started living longer and the longer you live, the more likely you are to get cancer. So we are on an upward trend,” he says.

Up to now, everyone says the figure is one in three, says Devane, except the figure is wrong: “It has gone up from one in three to 42 per cent of people in the UK who can expect to get a cancer diagnosis. That will shift up again over time.”

Most people who do are aged over 65, but the majority – bar those with the most difficult cancers, such as lung – are living longer, on average for six years after diagnosis, rather than the one year common in the 1970s.

“Median survival is improving: breast cancer is north of 10 years since the 1980s; there has been no progress in 40 years in lung, pancreatic, brain, oesophageal, stomach. Practically no progress, because they are tough.

“The big National Health Service problem when designing cancer services is how do you cope with four million people? We are not going to have twice as many doctors, pay twice as much tax, or have twice as much of whatever it is. The innovation job is to invent services for four million,” he says.

More specialist nurses and better information will be needed, along with keeping people at home and, preferably, in work, since that helps to avoid the downstream costs, both social and economic, caused by illness-created unemployment.

In Manchester, MacMillan reviewed the city’s cancer care delivered by seven hospitals, examining every medical record for four years. Some patients spend 16 days in hospitals on occasions, when Devane argues that a tenth of that cost could keep them happier at home.

Blessed with good data, MacMillan can tell a lot about today’s cancer picture in the UK, all of it supporting the need for centres of excellence. Lung cancer patients will get surgery “if you are in Leicester”, for example.

“If you have a specialist thoracic surgeon used to operating on lungs, they’ll say that’s operable. If it’s a cardiac surgeon doing a bit of thoracic they might say, ‘I haven’t done enough of them, I am not doing it. I might kill the person.’ Leicester has enough skilled thoracic surgeons.”

Living with, rather than dying from, cancer creates its own problems.

Women alive 20 years after breast cancer are now suffering increasing numbers of heart attacks, undoubtedly caused by the after effects of radio and chemotherapy.

“It is only now that they are living long enough to spot that. We now have enough people living with bowel cancer five years on to know what the problems are, and some of them are unpleasant. Incontinence is the obvious one, with a quarter affected.“

Left a widower in 2003 because of cancer, Devane knew he wanted to leave his past life behind, so he went to the United States to study and think: “So when I came back it wasn’t ‘Poor Ciarán, how is he getting on?’, it was ‘How was America?’ So, it worked for me and it worked for other people, as well.”

Approached by headhunters about MacMillan on his return, he was doubtful about the opportunity believing “that I had done my cancer”, but they persisted and seven interviews later he was offered the post, and accepted it.

MacMillan helped Katy and he during their illness: “Of course, the whole thing was awful, but we had great support. The NHS was fantastic, the GP, the district nurse, the hospice down the road. Of course, MacMillan was brilliant.

“Having been young and immortal, we knew that MacMillan existed but we weren’t aware of it in the real sense. So in an unfortunate way, we were quite fortunate, we were young, we were both in jobs with understanding employers, with doctors in the family.”

Nine years on, Devane draws on his experience, but not too much: “One of the things that I am pretty passionate about is what it’s like surviving the growing number of cancer diagnoses if someone doesn’t have the understanding employer, or doesn’t have the family support, or doesn’t have the wherewithal to get around the system.

“What I hope I don’t do is base my judgment on one experience, be it mine, or anyone else’s. I hope I don’t do that. Katie was diagnosed in 1998 and died in 2003. You can’t base it on ancient history, but it does mean that you are very empathic.”

It has gone up from one in three to 42% of people in the UK who can expect to get a cancer diagnosis