As one of the growing number of cancer survivors, (four years in remission and counting), I can empathise with those who, during the current Covid pandemic, are awaiting diagnosis or treatment for cancer.
It will be an understandably difficult time for them, with even the most stoical and resilient among them likely to run the gamut of emotions, from anxiety and frustration to anger and depression, particularly given delays in receiving the care they need.
My experience was a fortunate one, in having speedy, expert and compassionate treatment and aftercare. Throughout this, I was involved fully in the process of diagnosis, decisions on delaying treatment until it was necessary, and choices over the form of treatment that was right for me.
Also, I benefitted from access to a range of recovery support, including my own fitness trainer, as well as instruction in T’ai Chi and Mindfulness, along with ongoing regular check-ups. Some of this was sponsored by Macmillan Cancer Support, whose excellent, comprehensive cancer guide booklets were an essential source of reliable information and empowerment for me.
As a result, despite some long term side-effects,I have been able to lead a full life, and to plan for the future with confidence. Regrettably, these key principles of Personalised Care have not been a universal experience for others like me. As our thoughts start to turn to what kind of a post-pandemic world we want to build, there should be no thoughts of simply returning to the old status quo, at a time when there will be so many opportunities to do better, not least by listening to and learning from people’s lived experiences. This approach underpins all our activities in the Coalition for Personalised Care.
It is time for medical and care practitioners to trust in the wisdom of those who know by having been there themselves on a daily basis, and to always start from a position of asking them their preferred approach. The key question is how would you like to grow your resilience and your capacity to take control of managing your own care?
Some of us have real fears that, as the current pandemic finally subsides ,a well-intentioned rush to deal with the growing backlog of cancer treatment will unhelpfully cut-across this focus on individual needs and preferences. A blunt, blanket approach of herding people into “efficient” large, categorised cohorts must be avoided. More nuanced approaches will be needed, that recognise the the value of local, community-based care and the benefits of supported self-reliance. This is true particularly for those who are unable or unwilling to engage in jointly creating their own bespoke care packages.
For these reasons,I’m a passionate supporter of C4PC’s new approaches to creating palpable energy around the roll-out of Personalised Care as the “new normal” in all health and care settings. These include a new Taskgroup, with our partners such as Macmillan, working to produce practical insights and support for better ways to deal with the backlog of cancer treatment and recovery support.
In the next few months,we expect much of the Coalition’s work to become of wider interest also to those dealing with multiple Long Term Conditions, including those people suffering from complex Long Covid symptoms. It is likely that they also will want to be helped to “take back control” of their own care, as the key to improving their quality of life.
Covid-19 has been a harsh tutor, but we can readily apply much of the emerging learning from the pandemic to relieve the suffering of millions. The Coalition’s “Learning from Covid” group of partners is already at work on this, so watch this space!