“We don’t talk about ‘fighting’ cancer”
Professor Val Jenkins, Deputy Director of SHORE-C, is celebrating the cancer communication research group’s 20 years of being on the University of Sussex campus.
I first came to Sussex in 1986 as a mature student to study Experimental Psychology. I’d been nursing in a cancer hospital in Cardiff and was often asking the patients questions about their quality of life and how they coped with the side effects of their treatment. They were the ones who suggested I should apply to study psychology.
Everyone knows someone who has died from cancer. Sadly, I’ve experienced it quite a lot in my own family. My dad died from lung cancer when I was an undergraduate, one of my brothers died from prostate cancer, and one of my sisters has multiple myeloma and is having fortnightly chemotherapy. I know that having understandable information communicated in an honest and timely manner makes a big difference to patients and their carers.
After my BSc, I worked on a breast cancer study with a local surgeon. The project examined how giving patients taped-recording of their consultations following breast cancer surgery might improve their understanding about treatments and relieve anxiety. The research gave me an appetite to return to Sussex and complete a DPhil in neuro-psychology.
In 1996 I began working with Lesley Fallowfield, (now Dame Lesley, and co- incidentally another Sussex graduate), who was Director of the Cancer Research UK (CRUK) Psycho-Social Oncology Group at University College London. I conducted a project about the communication around randomised clinical trials of cancer treatments. I recorded the doctor-patient consultations about the clinical trials they were being invited to join to see what the patients thought it all meant. That research led to devising educational materials aimed at helping doctors and nurses to explain randomised trials better.
The group was invited to come to Sussex when the University, together with Brighton University, were developing a bid for the Brighton and Sussex Medical School. Initially we were based in Life Sciences. I was extremely happy about the move, which felt like coming home.
We renamed ourselves Sussex Health Outcomes, Research and Education in Cancer (SHORE-C) in 2011 when CRUK decided to focus more on finding cures for cancer rather than funding psychosocial research. We kept saying, that while you’re finding the cure, patients are still experiencing the side effects of cancer, and they and their families have to deal with them. But thankfully we’ve been extremely successful over the past 20 years in securing research grants from other sources.
We’re particularly interested in looking at the quality of life of patients during and after treatments. For example, when testing a new drug for breast cancer against the standard treatment, there may not be a significant benefit in terms of survival, but there may be a huge difference in side effects. We’re interested in hearing the patients’ point of view and then developing interventions, information and education materials that might help them and also clinical teams.
Personally, I’m a big yoga fan, and managed to get funding to see how yoga affected patients during their cancer treatments. We found there was a benefit to their quality of life and had a lot of good feedback from patients. Subsequently, much larger studies have shown that it improves quality of life. Yoga isn’t for everyone. It could be walking, sitting listening to the music that you like- anything that reduces levels of the body’s stress hormone cortisol.
We work with patients on all our studies. For a long time we have collaborated with the Independent Cancer Patients’ Voice, a patient advocate group. We find out about communication gaps and other unaddressed problems, which helps us design interventions they would like to see.
There is considerable inequity in the research world. We know that some cancers, such as breast cancer, are the focus of much more attention than other less common ones. We’re also seeing cancers become chronic conditions, which affects other aspects of patients’ lives in terms of their work or their care needs.
Thankfully, we’re moving away from describing cancer as a ‘fight’, with people ‘winning’ or ‘losing’ the ‘battle’. That sort of language can make those for whom treatments don’t work feel a failure. It’s not that they failed the treatment, but that the treatment hasn’t worked for them.
One of the big things that’s changed in 20 years is the new knowledge about many different types of cancer- even within breast cancer. This has led to more personalised treatments for patients, involving new drugs and techniques, all of which needs to be communicated and explained.
It’s still the case that a cancer diagnosis comes as a huge shock for anyone. But if it happens to you I would say, take a deep breath, get the best information that you can, and if you don’t understand what the healthcare professionals have said, be bold and ask questions — and always have somebody that you can rely on to be with you.
Interview by Jacqui Bealing
www.sussex.ac.uk
