Radiotherapy treatment is a taxing process – whether undergoing treatment yourself, helping family members who are facing radiotherapy or delivering care as a Therapeutic Radiographer, the emotional impact cannot be underestimated.
Institutions across the UK offer a wide variety of support systems to help patients, family and friends – Macmillan’s cancer support service provides information booklets, practical tips and referrals to other support groups and specialist services, for example, and is available for anyone with cancer and their loved ones.
But Lisa Whittaker, who was until recently the patient and public engagement coordinator for King’s College London and Cancer Research UK, wanted to do something different. She drew inspiration from Gemma Fay, a patient who had been involved in the Radiation Reveal project, which brought together a group of young radiotherapy patients in a series of workshops with biomedical researchers across London to better understand patient experiences of cancer and treatment.
Lisa explains that Gemma, who sadly died last year, was a “very talented artist”, who inspired the creation of their Patient and Public Involvement and Engagement initiative. “Because of our involvement with Gemma, we wanted to find a way to involve family members and loved ones in the work that we do, as well as people who have had experience of cancer and radiotherapy,” she says.
Gemma’s warmth and enthusiasm sparked the development of a collaborative art project, bringing together people who have had radiotherapy, their family members or carers, radiation researchers and Therapeutic Radiographers to create works of art about their experience of radiotherapy. The project asks: ‘What does radiotherapy mean to you?’
Synergy sat down with Lisa to find out more about the project’s progress, its successes and impacts and the lesson she has drawn from running it.
But Lisa Whittaker, who was until recently the patient and public engagement coordinator for King’s College London and Cancer Research UK, wanted to do something different. She drew inspiration from Gemma Fay, a patient who had been involved in the Radiation Reveal project, which brought together a group of young radiotherapy patients in a series of workshops with biomedical researchers across London to better understand patient experiences of cancer and treatment.
Lisa explains that Gemma, who sadly died last year, was a “very talented artist”, who inspired the creation of their Patient and Public Involvement and Engagement initiative. “Because of our involvement with Gemma, we wanted to find a way to involve family members and loved ones in the work that we do, as well as people who have had experience of cancer and radiotherapy,” she says.
Gemma’s warmth and enthusiasm sparked the development of a collaborative art project, bringing together people who have had radiotherapy, their family members or carers, radiation researchers and Therapeutic Radiographers to create works of art about their experience of radiotherapy. The project asks: ‘What does radiotherapy mean to you?’
Synergy sat down with Lisa to find out more about the project’s progress, its successes and impacts and the lesson she has drawn from running it.
‘We try and look for different ways, more creative ways’
Consisting of five online workshops conducted over the course of the summer, participants each created several pieces of art, wrote poetry and shared their experience, in a process Lisa describes as “really brilliant, and moving at times”.
The work was conducted as part of Cancer Research UK RadNet City of London, and won City of London Centre funding to be carried out.
Participants also got a chance to commemorate their creations at a Celebration Event on 1 October, which brought together parties from patient and public engagement projects across RadNet City of London over the past five years. In a glamorous showcase of the art created over the course of the workshops, attendees had the opportunity to celebrate their achievements and look ahead to the next five years of radiation research in London.
Led by artist Liane Harris, 13 participants engaged with the radiotherapy arts project to explore the topic – made up of eight radiotherapy patients, two patients’ loved ones, two Therapeutic Radiographers and one radiation researcher. “Myself and my colleagues, we’re always looking for new and interesting ways to get involved, because we don’t just want to be doing the same thing over and over again,” says Lisa. “We try to look for different ways, more creative ways.
“We wanted to see what happened and what we could learn from it. And now we’re really keen to share that with other people.”
Each workshop saw Liane introduce participants to different creative processes, taking attendees through their own artistic journey to create something new, something different and something insightful. “We had a real mix of people,” says Lisa. “Some people who’d had radiotherapy, and then we had the professional insight from the Therapeutic Radiographers.
“It was just fascinating. These were all people who had taken part in previous projects we’d run, but they didn’t know each other – they were in different projects. The friends and family members had never been involved in anything before. You never quite know what’s going to happen when you bring a group of people together.”
But Lisa’s fears proved to be unfounded. Once the group was gathered together, it turned out to be “just amazing”, she says. “Before the project started a few people said: ‘Oh, I’m not creative. I’m really happy to take part, but I’m really not creative’ – honestly, what they have produced is amazing, and so different.
“Experiences of radiotherapy are so varied. Some people have had really tough times, and there are people in their lives that they’re incredibly grateful for. That comes out in these artworks. It’s so rich and detailed.”
'You never quite know what’s going to happen when you bring a group of people together'
The impact
Over the course of the five sessions, Lisa grew to understand each of the participants’ experiences of radiotherapy in more and more detail. The creative projects drew out aspects of their treatment that Lisa had never considered before, she explains, creating a space where attendees felt free to talk about their journey in a deeper and more personal way than ever before.
Lisa came into the project thinking she knew everyone there well – each of them, excluding the family members, had been part of RadNet projects previously, and she’d heard them share their experiences. But she wasn’t prepared for the depth and truth that came out from each session. “By creating something, by doing the artwork, people think about things they have never mentioned before,” she says.
“One participant, because of her treatment, had some impairments down one side of her body, and she was really struggling to cut things out during the project. That was directly related to what we were doing – but she hadn’t mentioned any of this before. We started to talk about that a little bit.”
The impact of the creative projects was huge. By engaging with the process and creating something so personal and unique, participants came to new insights about their treatments, had meaningful conversations and connected to each other on a deeper level. “It was really powerful, creating things, and what that encouraged and enabled people to talk about,” says Lisa. “The other thing we learned is that projects like this give people the opportunity to come together and chat with other people who get it.
“They’ve not had the same experience. Everyone’s unique but people’s openness and honesty was incredible. People don’t usually have lots of space in their life to share and to talk about these things, because often when you’re going through treatment you’re focused on the other demands that life brings.”
Even though that wasn’t part of what they set out to do, Lisa explains that giving people a space to share and to be open and honest was incredible. One participant, Corinne, thanked her for the opportunity to talk openly and freely with her daughter, who had finished radiotherapy treatments some years ago, about the subject. “It was quite emotional at times, but there was lots of laughter,” says Lisa.
“And we’ve never involved Therapeutic Radiographers in any of the projects I’ve done before. I can’t speak for everybody, but it was really nice for them to be part of this. Their insight, their professional experience on the challenges of working in the NHS, what they would like to do for their patients in an ideal world… That brought a lot of understanding.”
Staying on track
Patient engagement is an aspect of radiotherapy treatment that deserves as much attention as possible, says Lisa. With so much good advice, and so many guidelines available for use, it can sometimes feel overwhelming – but that shouldn’t deter anyone, she adds: “I would definitely encourage people to get involved in this type of project, especially the creative side.”
For those interested in doing so, flexible planning and clear communication should be top priorities, and having a singular, main point of contact to oversee the creative process aspect are essential components. “Part of the success of this process was Liane Harris,” explains Lisa. “She likes to have a very clear plan and structure, and that wasn’t quite possible with this one. We just wanted to see where people took us.
“It was really flexible. People dipped in and out of some of the projects, but we had practical methods for keeping in touch – that was really helpful. It’s nice to find a good way of communicating.”
Financial reimbursement also mattered, she says.
Bringing in people with lived experience was so important as they didn’t want to hold anything back. “Almost all the workshops ran over slightly because, when people are sharing their personal experiences, you don’t want to be finished,” says Lisa. “The whole group was supportive of each other in that as well. But when you’re setting a plan, allow more time than you think you need.
“Seek out support from people in roles like myself – it’s a lovely position to be in to try and support people to come together in this way.”
'It’s so important, and it’s great that it’s been recognised, encouraged, supported and funded'
Lisa’s role
As patient and public engagement coordinator for King’s College London, Lisa supported researchers working on radiation and radiotherapy based in institutions funded by CRUK. She worked to involve and engage with as many patients, different audiences and people who have had radiotherapy as possible, so that they could influence and help shape the nature of research.
Lisa also wanted to give them a chance to find out what’s going on and ask questions – which was “very much the core of my job”, she adds. Helping to involve people in research and engage with people across RadNet was a key driver of the project in the first place.
However, Lisa’s time with King’s College has come to end; having “had the fortune of working on loads of projects” with the college, Lisa is now moving on to Blood Cancer UK, where she will be carrying out similar work to involve people in radiotherapy research. “Not everyone can say they love their job, that it’s interesting and that they get to meet such brilliant people,” she says. “And I know how fortunate I am. There’s lots of times where it doesn’t feel like work, so it’s definitely something that I want to continue, and I believe in it really strongly.
“Allowing patients and people with lived experience of all conditions to meet the researchers can really help. The researchers value patients – they help make it as good as it can be, as meaningful and as relevant as it can be, so we can improve treatment for all sectors.
“It’s so important, and it’s great that it’s been recognised, encouraged, supported and funded.”
See all the work created below (click to enlarge)
More about CRUK
Cancer Research UK funds a number of radiation centres of excellence across the UK, including the City of London, which is made up of four institutions: King’s College London, University College London, Queen Mary University of London and the Francis Crick Institute.
Researchers working on radiation and radiotherapy are based in each of these institutions, and their work is funded by CRUK.
This network, known as RadNet, helps the research community to tackle major challenges in radiobiology and radiation oncology. It aims to attract further funding for radiation research from funders and institutions.
RadNet has committed to maintaining momentum in understanding how best to apply and deliver radiotherapy.
Image credits:
Jack Latimer
Getty Images
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