By Mandy Trickett MSc MCSP
In May this year I was privileged to be part of the UK CanRehab team (www.canrehab.co.uk) led by Dr Anna Campbell MBE, who flew to Club La Santa (www.clublasanta.com); a holiday and sports resort in Lanzarote. The aim of this week wasn’t to just to enjoy some much needed sunshine but to undertake a reconnaissance visit shadowing and observing a cancer rehabilitation team from Denmark with a view to potentially organising a team from the UK to attend next year. Apart from being an immensely enjoyable experience, it was one which challenged my current approach to health care provision and has completely changed my professional outlook as a physiotherapist towards assisting the rehabilitation of people with cancer and other long term conditions.
The Danish team organise this event every year and have done so for the past 6 years, with every year becoming more successful than the last by learning from the participants and developing the programme with every visit. This year, 45 participants who have undergone treatment for cancer took part in a week long programme of a range of sports and physical activities supported by a multidisciplinary team of sports coaches, fitness instructors and health care professionals (a clinical psychologist, an oncology nurse and a physiotherapist). The age range of the participants spanned from 19 – 74 years and there were many different types of cancer – all at different stages. Some participants were already physically active and some were just starting out. Some had been attending every year and plan to continue to attend and for many it was their first time. Some attended with friends (whom they had met on a previous attendance) and some attended not knowing anyone and reported glad of the time out from protective family and friends back home.
The Danish team organised a wide programme of set group activities with space for participants to choose their own activity during the day. In the evenings, apart from dining in the lovely resort restaurants, the participants were invited and encouraged to attend self-management groups which covered topics such as anxiety management and relaxation sessions; ensuring that holistic needs were addressed. The CanRehab UK team took part in as many of the exercise sessions as we could; learning and observing the delivery of the programme. I would say I am of average fitness for my middling age and during my week in Club La Santa, I undertook an average of six activities a day; some I was familiar with and comfortable taking part in and others were completely new to me and out with my comfort zone such as stand up paddle board Pilates in the open sea and mountain biking up the coast at 0700hrs along a narrow track with large sharp rocks of previously molten lava on either side – this definitely increased my heart rate and falling off was simply not an option. As reported by many of the Danish participants taking part in something out with your comfort zone and achieving it, is exhilarating. “Listen to your body” was frequently reported by many participants as good advice recommended by their oncologists at diagnosis. On this particular mountain bike ride as I peddled furiously at the back trying hard to keep up and stay upright, I did doubt that I had correctly followed this good advice from my newly found friends; however, I did it and can confirm it felt exhilarating to complete the task. The Danish participants generally welcomed their oncologists’ advice at diagnosis (which is standard practice in that country and which provides a referral pathway into a programme called Body and Soul during chemotherapy) to remain or become physically active as a support mechanism to cope with the cancer treatment and also to keep well in the future. Their research has reported to give participants physical, psychological and emotional strength to endure, complete and move on(1). The UK researchers also used the opportunity to run focus groups and short 1:1 interviews with the participants and staff to try to capture the experiences of the Danish group.
Overwhelmingly, the participants reported the support and camaraderie of each other and the staff was a one of the most important and positive aspects of the week. Learning from others who had been on similar journeys and sharing experiences with others who understood helped. No-one had to explain what if felt like to be diagnosed with cancer or go through chemotherapy and participants said they “felt safe”.
What does “safe” mean? In health care, does it mean a risk averse, paternal approach with an outcome improvement focus? Of course, there is definitely a time and a place for this approach in health care but how do we apply this to the enablement of people living with and after cancer in the community? The organising team did not know the medical details of the participants other than what the participants were willing to share. The participants took part voluntarily and were responsible for their own decision making regarding consent and taking part in activities. This was a significant learning outcome for me and made me reflect on my own practice and recommendations in practice. I was now acutely aware of my slightly paternal approach and recognised the need to shift to another paradigm (2); one of true partnership with participants. To achieve positive changes in health behaviour, is it now time for us as clinicians to stop recommending what we think is the correct physical activity intervention e.g. circuit class and instead use our communication skills to empower and ultimately enable individuals to achieve their goals; restore their function and return to their ‘new’ normal following cancer treatment with us acting as facilitators to promote successful long term self-management?
We now know, in the absence of a few specific contra-indications, that physical activity is good for us – throughout life; it’s a given. Yet there are still wide-ranging discrepancies in physical activity interventions offered by UK health and social service providers to enable safe and effective participation. Is this going to change in the near future? Possibly not but what we can change is how we, as clinicians, respond to this situation. We are now required to adapt to changes in demography and do things differently by shifting our paradigms to interweave a culture of enablement alongside our rich culture of care by providing a dynamic and innovative approach to give people greater choice, independence and dignity following a cancer diagnosis and treatment – starting with placing patient goals for living at the heart of the holistic support we provide.
Avoiding long periods on inactivity is supported by strong evidence to help achieve these goals but little evidence is known in relation to patients’ choices relating to how best to achieve this and much work is needed to explore this to achieve long term positive health behaviour changes as witnessed in this inspiring, humbling and motivated group from Denmark.
I am a different practitioner now, I understand the term ‘informed consent’ in a different way and I fully recognise the importance of regaining autonomy after a cancer diagnosis and treatment and feel my time with the Danish participants will help me achieve this in my practice.
It was an amazing week.
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Additional Information:
CanRehab provides:
- Training to become a cancer exercise specialist,
- CPD courses for health professionals interested in cancer survivorship and lifestyle
- A database of experts in exercise based cancer rehabilitation
CanRehab also plans to take a group of UK cancer survivors to La Santa next May at the same time as the Danish group.
If you would like more information on any of these CanRehab services, please contact Dr Campbell at info@canrehab.co.uk
References:
- Adamsen LM, Quist M, Andersen C, Moller T, Herrstedt J, Kronborg D, et al. Effect of a multimodal high intensity exercise intervention in cancer patients undergoing chemotherapy: randomised controlled trial. BMJ. 2009;339(3410).
- Hospice UK 2015 Rehabilitative Palliative Care – Enabling people to live fully until they die a challenge for the 21st century. https://www.hospiceuk.org/what-we-offer/clinical-and-care-support/rehabilitative-palliative-care
AHPs across health and social care. 