We have mentioned previously that the Trustees decided to expand the scope of our charitable purpose, to fund not only research projects but also projects concerning palliative care and those that help people who are living with and beyond cancer.
Quite a few projects in the third category have been submitted for consideration during our 10th anniversary year, and we have already written about the ones we decided to support. We wondered if getting those different ‘beyond cancer’ projects talking to each other might open up some avenues for cooperation.
And so, the day after we had organised a videoconference specifically on the project to train Nepalese oncologists in paediatric radiotherapy techniques, we were back online, miraculously finding a time slot to suit representatives of three projects spread across the globe, in Calgary, the UK and Europe. It was incredibly interesting to hear the different stories behind the projects, the challenges encountered and lessons learned.
All three projects are exploring how climbing can improve the physical and mental health outcomes for those in treatment and recovery from cancer. Common themes emerged around motivations of participants, overcoming initial anxieties and tailoring programmes to individuals. Already it’s clear how empowering and stimulating participants find the experience, and how the many-layered aspects of climbing (whole body and cardio, mentally stimulating, accessible at any level, and highly sociable) make it a great form of exercise.
Manuel (Manny) Ester, cancer exercise specialist, got the ball rolling. He outlined their programme (see our previous article). Monthly sessions have been running in Calgary since January of last year. He called it “a big learning experience”. Over 30 different young adults have participated over that time, in groups of 6 to 10 per session. There are plans to expand to Edmonton, the other big city in the province of Alberta. A more intensive 6-8 week programme for teens is due to run over the winter in Calgary too with a different format.
While Manny obviously recognises the positive impact of physical exercise and specifically climbing for people living with and beyond cancer, he said “I think one of the biggest and most exciting parts of this is actually the community we build, the people and the connections,” with “a lot of smiles throughout”.
He also stressed the importance of safety screening up front. The organisers know what cancer treatment the person has had, their current physical considerations, what they’ve done in terms of climbing or physical activity in general. Manny reviews this before the sessions, not to rule anybody out, but to “make sure things are safe”.
He quoted one young participant, “Climbing is a place I can learn. I can fail and try again, and that’s what it’s about. The point is not to get to the top. The point is that I was willing to show up and try. I love that to rope climb you need a partner. It’s not a solo sport.”
Calgary is a sprawling urban centre and finding the right timing and location can be challenging. Evening sessions are when the gyms are at their busiest, so unless a dedicated space is set aside, it can be challenging for new climbers.
Aline Mercan presented the project, which is run in the rehabilitation outpatient department at the Rocheplane medical centre. The project centres on breast cancer, so their ‘clients’ are essentially women, with an age range of 25 to 80! The team consists of a doctor (Aline), two physiotherapists and one adaptive physical activity coach.
The aim is to use the specific physical properties of climbing to improve self-confidence, social interaction, global recovery and a social and professional reinsertion. The cohort is 132 patients a year, and they climb once or twice during their 2 to 3-month stay on average. The climbers will have had surgery and chemotherapy, radiotherapy, many have immunotherapy, suffer from exhaustion and pain, often accompanied by depression. Aline and her team have found that “climbing is a very power activity for global recovery. We have people with a lot of disabilities and everybody participates and everybody’s happy at the end. I’m not idealising, it’s really like that!” The feedback from the participants is “a lot of fear at the beginning and a lot of happiness at the end and usually most of them ask for more.”
Aline gave us moving feedback from one participant, “I was convinced I wouldn’t be able to get over [her fear of heights], but I did, and now I’m trying to figure out everything I can do without knowing I can.” For now they haven’t tried with the elder range of patients, in their 70s and 80s, it’ll be interesting to get feedback on that. There are also issues with specific disabilities “because with breast cancer, a lot of women have pain in the shoulders and they believe they can’t climb because of the shoulders, so we have to explain that they climb with their legs and we have to adapt.”
In terms of evaluation, there is a project with two medical students who want their dissertation to be about the effect of the overall programme at Rocheplane, including climbing. “We want to mix different methodologies. We use a questionnaire, like an anxiety and distress thermometer, so we have different questionaires we submit and then we can compare before and after the programme,” said Aline.
“I’m also a medical anthropologist, so we use qualitative studies. We ask the people to explain what they feel. What are their fears? What are the improvements? And we also want to work with psychologists because we have specialists in positive psychology, and they have all kinds of tools about coping. So we want to mix all these tools. Because we believe that it’s much more interesting than only quantitative studies.
And so so we are trying now to create a new puridisciplinary methodology to evaluate the whole programme. And there will be specific questions about climbing,” she added.
We look forward to their findings!
To sum up the project at Rocheplane, Aline said, “We knew how powerful it is for the patient, so we have only one advice: just do it.”
Marc Peart presented the project, with which CAC has been involved for just over a year. The climbing centre works in partnership with the National Health Service in Scotland, and with the University of Highlands and Islands to develop a a research base to be able to try and evidence the impact of what they’re delivering, as well as with an organisation called ‘Young Lives Versus Cancer’. So far “some of those relationships have been really positive. There’s a level of expertise that comes with those partnerships that we don’t necessarily have in the climbing centre,” said Marc.
One of the centre’s members of staff, a climbing instructor, has now done a cancer rehab course, and to Marc’s knowledge, he is the only cancer rehab climbing instructor in the UK.
Marc found interesting Manny’s comments on the screening and referral processes, which have proved to be major challenges to getting The Ledge’s project up and running.
When they first presented how the programme was going to evolve, its content and required delivery structure, they got two very different answers depending on the age groups of the participants.
The younger ones “weren’t so interested in the social aspect of of the climbing community. They wanted to bring their family in to see that they were still physically capable, that they weren’t victims, that they weren’t different, that they could still go out, and they could still still access adventure and challenge and climb and just redefine themselves again.” In contrast, the older cohort of people in the workshops “were really clear that the social aspect of climbing and that sense of community were much more important to them. So we’ve designed programmes that are slightly different for those two cohorts.”
In terms of challenges, Marc mentioned trying to work with the local university to develop a restructure research structure, which took “a huge amount of time.“ Similarly, working directly with the National Health Service took a long time to get going. Lessons learned? “We should probably have run some pilot programmes much earlier and just kind of said we’re going to get on with it and then those partners from the NHS and from the university could come at maybe stage two or stage three of the delivery of those programmes.”
There is a referral process, with the health service doing some of the screening process and then signposting people into the programme.
There are 2 programmes, one for a cohort of 16 to 25 year olds and another for 25+, each structured differently.
Through the referral process they gather information about levels of fatigue, about mobility on a set of scales “which allow us then, at the end of the programme, to look at what impact there has been.” The University of Highlands and Islands is leading the evidence-gathering aspect in order to produce supporting evidence when the programme is at the stage of being ready to share their experience. “We’ve had really good commitment from the researchers and from the National Health Service providers, it’s just taken a bit longer than we’d hoped.”
On the evaluation side, Marc said “There’s still an intent that we would look at things like range of movement, and consider fatigue scores as well as some of the more social based issues around self-confidence, feelings around resilience, reduction in anxiety, and having greater access to a social circle and feeling part of place and space. The University is keen to look at all of those things. However my view is increasingly that we should keep it much tighter and therefore we can start the delivery and if we need to expand on the the evidence base and the research base over time, then we can do that. But at the moment it’s taken a long while to just get to where we are.”
Marc found it really interesting to see that Manny and Aline are “up and running and delivering” and that what they describe seems a good fit with where The Ledge want to go. The first sets of referrals were due to come in over the following couple of weeks, with groups being built from mid-September. “So we’re a little bit behind you guys, but really excited to see that what you’re describing is having an impact,” Marc told them.
We at CAC are interested in thinking about how we could scale the project in Inverness up. There are 400 climbing walls in the UK alone… Would your wall be interested? Contact us!! No need to reinvent the wheel, you can learn from The Ledge’s experience… or perhaps you have tried to implement a similar project. What worked well? What didn’t? We’ll happily share your experience here for the benefit of others!
Evidence gathering was a common theme to all three projects presented. Richard (Dick) Cowan, of Christie’s, who also took part in our Nepalese project presentation, said “I think it’s so important to have some form of monitoring the outcome. To have scientifically documented benefits to this I think would help everybody. In the Christie Hospital where I work, we have a team looking at a lot of aspects of living with and beyond cancer.” Dick mentioned he was happy to talk to the other participants outside of the meeting if they felt it would be helpful.
Manny’s PhD was in evaluating exercise programmes for different cancer populations, and not specifically the climbing work, which was a ‘passion project’ for him. He handed over to Niki Fehr at Wellspring.
She said, “We have a standard evaluation process that we use across all our programmes in Wellspring, Alberta as a charity. All of our programming is evidence-informed and so, in the case of the young adult climb night, at the end of each session Manny and Danielle hand out a QR code that scans to an evaluation form. That form includes a range of questions so we can track programme quality and make sure we’re meeting our programme objectives. Among the questions are “has this programme reduced isolation for you” “has this programme reduced anxiety for you?” for example.
We scan those evaluations regularly and where necessary tweak the programme or pass that feedback to programme leaders. I report to a programme committee that’s made-up of researchers and health professionals and people with lived cancer experience.
We go through a fairly lengthy programme development process at the forefront, and so having that research available is always really important in building our programmes and sustaining them. There’s not a lot out there yet when it comes to cancer and climbing.”
Do you perhaps know of a structure that is doing this kind of evaluation work? Wouldn’t it be great if we could consolidate and compare some of the data? Taking into account regional / cultural differences, age groups, genders, types of cancer… what a fascinating subject that would be!
The GB paraclimber, cancer patient and advisor to CAC said “I just want to look at it as a cancer patient. About a year ago after I was diagnosed with colon cancer and I had the right hand side of my colon removed, I was physically unable to climb as an athlete and a patient.
Trying to get some kind of support in the UK, there was little to no information about how activities would benefit patients. I was kind of directed towards a chat group, but it’s under patients’ own responsibility to find it all out.
I also have MS and I wasn’t advised to take chemotherapy because of my low immune system. Having two acute mental health or two physical problems created a barrier for me to be able to exercise and to try and find a community that I could go and talk to. I was interested to hear about what the prescreening checks are that Manny mentioned, and bringing that into the UK.
I do know of an example in Germany where they bring climbing into their rehabilitation for anybody that has some kind of hospital-type condition. They built a climbing wall on the side of the hospital and they use climbing as a form of rehabilitation for people that have lost limbs, have had cancer or whatever . There is a need to have, like Mark says, two different types of sessions. One to deal with the younger kids that just want to get on and climb, the second session is bringing together the family and the parents of the child that was diagnosed. My Mum couldn’t cope with the fact that I had cancer. It’s not only about the patient, it’s also about the close family because they need to understand that just because I’ve got cancer doesn’t change the way that I am. I’m affected by how my family treats me because they think I’m broken. So it would be good to have different sessions where you can invite family and friends.”
Manny mentioned that most of Wellspring Alberta’s programmes are open to anyone affected by cancer, including faimily and caregivers. “Often couples come together, one being the person with the cancer diagnosis, the other being a firend or caregiver. It provides a nice mix of people and a great balance. I agree it’s valuable for people to see the individual they’ve supported through cancer being able to climb and get up the wall and do things just fine.” This echoes what Marc was saying about the younger cohort in Inverness, too: “Young people feeling that they were being defined by their cancer and treatment, and they were pushing really hard against that.”
And after an hour and a quarter it was time to wrap things up!
It was agreed that the group would reconvene in a few months to discuss progress in the different projects. So stay tuned!
