A musician from Manchester has spoken of her joy at the NHS clinical trial which has given her the chance of an extended life.
Professional viola player Cathy Perkins, 63, who has melanoma in her finger, was given only months to live before she took part in a groundbreaking clinical trial.
“Four years later I feel privileged to be alive,” she said.
The National Institute for Health Research (NIHR) has issued an urgent call for more people to volunteer for NHS clinical research trials, which are crucial for the progress of ongoing research.
A new study has revealed that few people are currently willing to take part, with only 14% of 2,000 adults questioned having participated in one, despite 85% of them saying they want to help the NHS find better treatments.
There is now a drive to change that with the NIHR keen to emphasise that patients who volunteer will often see improvements to their own illness.
Cathy was given the option of taking part in a breakthrough immunotherapy treatment at the Christie cancer centre in Manchester.
“When I was diagnosed there was no hope and no treatments. I felt so angry that the retirement I was planning was being taken away from me.
“Now I’ve got nothing but praise for the the Christie. I have to go there regularly and they feel a bit like family to me now.
“The treatment doesn’t make me feel ill and side-effects are sorted with a pill,” she said.
Cathy is now able to play the viola again.
Simon Denegri, national director for patients, carers and the Public, at the NIHR, said: “Research has played a massive part in transforming the healthcare that patients have access to today – from the discovery of penicillin to the production of the contraceptive pill – but we urgently need more people to get involved if we want to continue offering our patients world-leading healthcare.”
The NIHR study found that 56% of the participants were concerned that taking part in a trial might be unsafe or lead to side-effects, but 87% of those who did take part had a positive experience.
“Actually being on a trial is extremely safe,” said Simon. “Most people like the fact that they are closely monitored, with good nursing care. Quite often trying a new treatment can be a way for patients to take back control in what can be a very frightening scenario.”
Mohsan Akhtar, 46, a father-of-three from Watford, joined a clinical trial that ultimately enabled him to play with his children again.
Mohsan, a shop and restaurant owner, had a rare bacterial infection which attacks tissue, muscles and organs.
Aged only 29, he needed emergency surgery to amputate his left leg above the knee. He was fitted with a prosthetic but could only use it for a few hours.
Years later he was invited to take part in a trial which involved testing new technology which fitted a prosthetic limb directly to his skeleton.
There was a risk attached; if the trial had not worked then Mohsan might have had to lose a bit more of his stump.
However, the trial was a success and he said: “Now I can put on a pair of shoes and walk for as long as I like. Most people would take that for granted, but being able to get out with my children is the best thing.
“If I had one message about clinical trials I would say people should take part. Do your research, speak to other people, and if you are confident then go for it – you’ll also be helping so many other people.” he says.
Busting the myths
The NIHR survey found that several people believed myths about clinical trials, including:
- 23% believe trials are only for people who are ill
- 58% think children cannot take part in trials
- 38% think all trials involve testing a new drug
- 66% think you have to be invited to participate in a trial
Simon is keen to challenge these perceptions.
“Although I would encourage people with illnesses like dementia or cancer to ask their doctors about a trial, I would also encourage healthy people to consider taking part,” he said.
“We’ve found that there is a very strong altruistic element for those healthy people who sign up. They really do want to help others get better. And as for children, those are some of the most important trials we do.”
Participants in NHS research trials are not paid to take part, although expenses can be paid in some circumstances.
The NIHR is also keen to attract more people from diverse communities.
“Recently an academic centre in Manchester wanted to test hearing aids in infants,” Simon explained.
“Originally we asked young mothers to come into hospitals. Many of them told us that wasn’t practical, that they didn’t have the time or money to come to the hospital, so the research team travelled around in a small van and tested kids in their own homes. It was a great success.
“We need more initiatives like this.”