So many of the incredible resources out there for people affected by cancer, were started by someone who saw problems with the system that they faced. In a similar way to why I started SimPal. Although these organisations are in the majority, most are smaller and struggle to get publicity. Being drowned out by the giants and their TV adverts. Plus the lack of any effective collaboration, due to competition for funds. But we have all seen since covid, the impact that these organisations can have with their timely interventions. I am so delighted to welcome Robin Daly and his charity Yes to Life to join us in the Chris’s Cancer Community family! Below, Robin tells us why he started his charity.
“Little could I have imagined that, almost two decades after founding the charity Yes to Life as a vehicle to bring choice and person-centred care to those with cancer, ‘wellbeing’ and ‘lifestyle medicine’ would be common currency in discussions on healthcare, that our work would attract a growing groundswell of support from healthcare professionals, and that I would be co-hosting a podcast with a senior NHS oncologist who is as passionate about the introduction of Integrative Medicine into cancer care as I am. It was all just a distant pipe-dream back then, a ridiculously idealistic ambition.
The impetus for the charity came from the experience of supporting my youngest daughter Bryony through cancer three times – age 9, 13 and 23. What we experienced spanned the spectrum from excellence in procedures to colossal gaps in care, shortcomings borne of a seriously outdated cultural model that seemed frozen somewhere in the ‘Carry on Doctor’ era. The closed-mindedness that rejected everything new, regardless of its potential to help, that crushed reasonable hope with what was deemed to be ‘realism’, and that favoured clinical detachment over empathy or compassion, all came together to create an environment that was far, far from the supportive, caring refuge so desperately sought in our hour of greatest need.
Efficient but unkind would be a fair way to summarise our experience. My precious daughter suffered through many horrendously abusive situations at the hands of this system, as did the rest of our family, and it galvanised us into doing what we could to improve the lot of those with cancer.
We set out to create a service that could empower people with good quality information about their many options within what is now known as Integrative Medicine, and thereby build ground for reasonable hope and optimism, create a level of control and autonomy, provide the supportive listening environment so many were seeking, and create a community of like-minded people for mutual support. And I’m pleased to say we have achieved all of that through our many services that include our Helpline, information-rich website, extensive educational programme, Wigwam support groups, radio shows, podcasts, book, blogs and much, much more.
Far more difficult to achieve has been the desperately needed cultural change. While in the US integration has become increasingly ‘normal’, the spectacular resistance to progress displayed by our NHS has left us out in the cold. In fact change has really only just begun in the last very few years, accelerated somewhat by the pandemic. Overall, things are still ‘business as usual’ – patients are still routinely warned off all attempts at improving their own health and wellbeing, and fed unscientific advice such as ‘It doesn’t matter what you eat if you have cancer’.
But the first cracks in the wall of conservatism are beginning to appear now, and I am hoping they herald a spectacular dam bust in the near future, the result of holding back progress for far too long. There are few walks of life today in which we are likely to stumble on such a survival of institutionalised disrespect of individuals and abuse of power, as in oncology. What was a commonplace experience in the mid-twentieth century has thankfully been left in the past by most organisations, consigned to the ‘unacceptable behaviour’ box. I sense that now the alternate-world experience of working in the ‘system first, people second’ NHS contrasts so starkly with the rest of life that there is as much appetite for change within healthcare as there is amongst the public. The archaic culture is every bit as repressive and damaging for those within the system as it is for patients.
The recent rapid advances in Integrative Medicine mean it now has the most enormous potential to support people through cancer treatment, to relieve much of the suffering directly caused by conventional treatments, to improve outcomes, and more, and a growing number of people are accessing its many benefits, despite the lack of support from the NHS. The effect of opening the hospital doors to integration will be nothing less than transformative as and when it happens, both for staff and patients.
The reason for this is that the cultural changes so desperately needed by our NHS are already well developed within Integrative Medicine. Person-centred care and choice are the very foundations of Integrative Medicine. Respecting the wishes, interests, world-view and choices of each individual are an expected base line, as is working in partnership rather than through an unbalanced power dynamic. Integration will bring much more to oncology than its inherent treatment benefits. It will make the NHS a far better place both to work, and to be cared for.
For now we must continue to work away, applauding and supporting initiatives towards integration whether from within or outside healthcare, and always seeking to promote dialogue and understanding rather than division and opposition. Right now, we are all the victims of an oppressive system that is damaging both its loyal workers and the public, through its institutionalised lack of care. We must pull together to force progress and change as quickly as possible, for the benefit of all.”
Robin Daly Founder & Chairman, Yes to Life yestolife.org.uk
I feel very privileged to be able to share this story. I’m sure there are experiences in there that we may have all faced at some stage. In many ways, Robin and I work completely differently. But ultimately we have exactly the same goal. To help people affected by cancer. Working in a more collaborative way will enable us to do this.