It started with a lump on Cathy Perkins’ index finger. The viola player didn’t know what it was; nor did her GP. The eventual diagnosis in 2008 from the Christie cancer hospital in Manchester was melanoma – skin cancer – but after treatment all seemed well. Then in 2013, a routine scan showed it had come back and spread to her lungs.

“They came back with this really bad diagnosis of just a few weeks to live,” said Perkins. “I burst into tears. I packed in work on the spot. I just remember being incredibly angry that my planned retirement had gone pear-shaped.”

Perkins, the assistant head of strings at a music school, booked on to a horse safari in the Okavango Delta in Botswana, determined to accomplish something she had dreamed of before she died. She told only those running the trip of her illness. She had one terrifying moment, she said, when she woke to find one eye was closed and hurt, but it turned out to be an insect bite.

Cathy Perkins still plays the viola after the amputation of part of her right forefinger. Photograph: Fabio De Paola/The Guardian

It was the best thing she had ever done, she said. And it might have been the last, but the NHS had something else to offer: a clinical trial of an experimental melanoma drug. She was invited to join a trial called CheckMate 067, which was one of the first trials exploring a different way of treating cancer called immunotherapy. It turned out to be revolutionary.

“Up to 2010 we hadn’t made any progress in living memory,” said Prof Paul Lorigan of the Christie NHS foundation trust in Manchester, who was one of those running the trial. “Since then we have made a huge amount of progress. This trial was a milestone. It has now defined the standard of care for melanoma.”

Perkins is now a long-term survivor, with a life and more horse safaris ahead. The international study in which the NHS played a major part was supported by the National Institute for Health Research, which has been investing £300m a year into the infrastructure – especially the research nurses and other trials staff – that make important trials possible in the UK.

That £300m has a major financial return for the UK economy, estimated at £2.4bn, says Matt Cooper, NIHR’s business development and marketing director. International research organisations and pharmaceutical and medical device companies want to conduct trials here. That brings new therapeutics such as innovative cancer drugs into the NHS and the companies pay their way.

Sample analysis tubes seen in a lab at the Institute of Cancer Research in Sutton. Photograph: Stefan Wermuth/Reuters

Crucially, NHS patients benefit in a manner that Cooper says is very democratic. “We have got the most integrated research system in the world. It is part and parcel of their journey through the system when a patient comes through the door,” he said.

“Access is very broad compared to anywhere else in the world. We have this infrastructure which means we can run clinical trials throughout the country, from Barrow-in-Furness to Coventry to Truro. That didn’t used to be the case before the NIHR was in place. It was concentrated in academic hospitals.

“I was in Boston at a big biotechnology conference last week. When you talk about what we have got, people say ‘wow’.”

Other countries are envious, he says. “It is a very democratised system. The NHS is doing the research but it is for the benefit of the population.”

Unlike the US and, indeed, most countries, the NHS is one huge integrated health system in which patients can be tracked – if they choose to allow it – from birth through their single NHS number. And all patients with the same condition should be treated in the same way, which is why there are outcries from time to time over the “postcode lottery” of treatments such as IVF that are available in one area but not another. But the contrast with the US, for instance, where the treatment you receive depends on the doctors at your particular hospital and your level of health insurance, is clear.

Scandinavian countries have similar health systems to the NHS, but have small populations that are far less diverse than the UK’s.

Sir Robert Lechler, the president of the Academy of Medical Sciences, said the UK had the third highest number of clinical trials in the world after the US and Germany. “It is impressive how that activity has increased,” he said. He put it down to the NIHR infrastructure and a change of attitude. “Back 10 years or more there was a slightly sniffy attitude to clinical trials. They weren’t scientifically so interesting.”

But now, he said, “there is a clear correlation between the fraction of patients entering into trials and clinical outcomes”. Where patients can join trials, the results are better, especially in cancer. Research is pushing the frontiers in genetic testing and drugs specifically targeted to the patient’s tumour. And Britain has doctors who have hospital jobs and academic research posts at the same time, unlike other countries.

Sir Robert Lechler: ‘Back 10 years or more there was a slightly sniffy attitude to clinical trials.’ Photograph: Tracey Croggon/bigTimages

Such are the strengths that Lechler does not believe UK research will be damaged by Brexit. “I’m a born optimist. I don’t see any serious evidence from the pharmaceutical or biotech or medical industries of withdrawal,” he said.

The NIHR has a budget of £1bn a year for research that will directly benefit patients in hospitals, in GP practices and everywhere else across the NHS, looking at questions from how to tackle alcohol-related harm, how to avoid mistakes in surgery, how to increase take-up of childhood vaccines, to how best to treat the soaring number of people with diabetes. In 2016-17, the latest year for which there are figures, it supported the recruitment of nearly 670,000 people into more than 4,700 trials across the NHS.

Georgina Shomroni joined up to help try to find ways to prevent or treat Alzheimer’s and dementia. “Three of my family members have suffered from it – my grandfather in 1981, at a time when it wasn’t really known about,” she said. “There was no facility for respite care. He was violent and would throw knives. When we wanted respite care, the hospital said we can’t take him unless he agrees.”

Things have moved on, but Shomroni’s mother developed vascular dementia and her aunt had Alzheimer’s. There is still little treatment for either. Shomroni, who works at the Bodleian Library in Oxford, wanted to help in any way she could.

She signed up to Join Dementia Research, a service managed by the NIHR which she saw on the Alzheimer’s Society website. Nearly 36,000 people have opted in so far, indicating their willingness to take part in suitable studies. Nearly 10,000 have been enrolled in trials.

Shomroni is taking part in a trial looking for ways to prevent dementia. “I spent one day in the hands of an absolutely lovely nurse, who does everything from take blood pressure, urine samples, swabs from your mouth and brain testing from verbal to drawing stuff to doing things on the computer screen,” she said. “An MRI is part of it and I agreed to have a lumbar puncture, which is optional.” The tests will be repeated every two years.

Ivan Koychev, a clinical lecturer in old age psychiatry at the NIHR, is involved in the study, called Prevent, which is designed to see whether the lifestyles of of 40- to 59-year-olds have an effect on who develops dementia and who does not. “We know that dementia starts up to 25 years before the first symptoms,” he said.

“Anything that is good for the heart is good for the brain. High blood pressure, high cholesterol, obesity, smoking are risk factors for cardiovascular disease and dementia.” In addition, regular exercise and intellectual activity may be protective, and living alone – without the stimulation of other people – may be a risk.

There is a genetic component, but it is stronger in those who develop early dementia. In dementia that develops after 65, there may be more potentially modifiable risk factors. It is likely that a lot of the volunteers in the study will, like Shomroni, have family members with dementia, but that does not exclude them.



Shomroni is a keen advocate for taking part in research. We should all think of doing it for our futures and our children’s futures, she said. “We’ve come a long way in medicine and research is the reason. The brain is incredibly complex but the more we know, the better our chances to slow, stop and even correct the disease – to give people back their minds and to give people their families back.

“When it comes to trials we are scared of what? We can make life so much better.”