20 years and counting…

20 years and counting… by Robin Daly

Yes to Life is coming up to twenty years old! A year of celebrations of this milestone kicked off in admirable style with our splendid launch event at the House of Commons a few days ago, which featured many new announcements, and inspiring speeches from leading figures, including Professor Karol Sikora, Sheila Dillon, Barbara Flynn and Chris Lewis. We’ve made it through the last two decades, but ‘by the skin of our teeth’ more times than I care to recall.

Our mission has been a tough one to take on, and it’s only because many courageous, skilled and dedicated people have been drawn to the charity over the years that we’ve managed to survive this long.

The oncology environment

Looking back over twenty years, it’s heartening to see that the environment for our mission has changed, and in our favour. ‘Lifestyle’ – one of the helpful terms that’s arisen in recent years – has moved from completely left-field, hippy medicine to approaching centre-stage, rapidly becoming a central plank of government policy to improve the health of the nation. Of course, this doesn’t mean NHS oncology is now all about nutrition and exercise – change in oncology is glacial at best – but the pressure for change is mounting, and we’re doing everything we can to increase that.

Game-changer

One of the most exciting developments in the last five years has been to find our mission ‘met’ with an equally passionate drive towards ‘Integrative Medicine’ – another of those helpful descriptors that’s emerged recently – from within NHS oncology. Spearheading this is the remarkable Dr Penny Kechagioglou. Dr Kechagioglou acquired an experience of the potential of  Integrative Oncology in the private sector, heading up oncology at GenesisCare, and realised that this was an approach with huge benefits that should be available to everyone with cancer. So she returned to the NHS on a mission to revolutionise the way that people with cancer are cared for. This development was a complete game-changer for us and has led us to collaborate with Dr Kechagioglou in a range of ways, including the popular CANCERTALK podcast series (yestolife.org.uk/podcasts).

The Yes to Life Charter for Oncology

As I mentioned, we have a raft of new initiatives to mark our anniversary, and front and centre amongst these is the Yes to Life Charter for Oncology. Right at the outset of Yes to Life, there were two massive issues in oncology that I felt desperately needed addressing:

• The first was the issue of patient choice. By then I was well aware that there was a mass of information and resources that people with cancer were not being told about; indeed they were being actively discouraged from looking beyond the bounds of the limited offerings of conventional oncology, despite the appalling effects treatments were having on their wellbeing and very poor outcomes.
• Secondly, the culture of oncology seemed to be out of step with the movement of society towards respect for individual choice, and the expectation that, rather than being proscriptive, services focus on finding out what each patient wants.

I felt these were two massive challenges that I would have to choose between, and I opted for the former, for raising awareness of the choices available to those with cancer.

What has occurred in two decades is a significant change in the awareness of the public of the role of lifestyle choices in health and the development and progression of chronic disease, but little to no change amongst oncology professionals. Patients who show interest are routinely given very poor and often unscientific advice, and clinicians are highly unlikely to broach the subject of lifestyle interventions unless prompted.

Not either/or

I have finally realised that in fact the choice I made twenty years ago was based on an incorrect premise, the idea that patient choice could be tackled without addressing the culture of oncology. I now see that the controlled, restrictive environment of oncology, is one that can never truly embrace choice, individuality, patient-centred care, indeed all the aspects of care that Integrative Medicine excels in. The corporate-style, top-down structure of our healthcare system is simply not capable of delivering the individual care people need, as it will always operate within its known model, which was built to deliver measurable outcomes, not to answer the fundamental needs of people at their most vulnerable for love, care and security, for ‘wellbeing’.

The Yes to Life Charter

So 2024 is the year we have decided to weigh in on cultural change in UK oncology. What can a tiny charity like Yes to Life do to change a monolithic structure like the NHS? Well, on our own… not much. With the help of the UK public… who knows? So we have written a six point Charter for Oncology with the aim of shining a bright light into the oncology ward, to give those who are lucky enough not to have been there an insight into the way things are, and to provide those who have with the opportunity to help drive change.

We’re fortunate to have the support of four impressive ‘Champions’ for our Charter:
• Prof Sir Sam Everington, OBE
• Dr Penny Kechagioglou MBBS (Hons), MRCP, CCT Clin Onc, MPH, MBA, DBA
• Chris Lewis, Founder of Chris’s Cancer Community
• Sheila Dillon, BBC Food Programme

The six Charter points are:

• Hope
• Empathy
• Aspiration
• Respect
• Trust and
• Open-mindedness

You can read a brief exposition of each point below, but if you are seriously concerned by this issue, you’ll want to read the full Charter: The Yes to Life Charter for Oncology
And you’ll hopefully also want to join us in promoting the Charter. If so, please fill in the form at the foot of this page to let us know.
Lastly, be sure to sign our petition here to have the Charter seriously considered:

1. Hope – respecting every patient’s choice to hope

Hope is intrinsically bound up with the will to live and a critical predictor of both quality of life and longevity. The certainties of ‘no hope’ or the dangers of ‘false hope’ often cited in oncology are inaccurate and deeply unhelpful. ‘Reasonable hope’ in the face of fear and uncertainty is a precious commodity, a human right that deserves respect and care.

2. Empathy – helping patients to feel as safe as possible

People diagnosed with cancer are, in most cases, in the most difficult and vulnerable position they have ever found themselves, and they need and deserve enormous care in the way all communications are handled, and particularly in the way their findings are delivered. Oncology staff must strive to understand the emotional experience of their patients, and to send them away feeling as supported, optimistic and cared for as possible after every appointment.

3. Aspiration – supporting patients in becoming ‘exceptional’

Every patient deserves to aim for the best possible result, and should be strongly encouraged to do so – after all, there are no guarantees in cancer care, and their life is on the line. The  public are increasingly aware of the growing evidence that exists for the crucial role of lifestyle interventions in easing symptoms, enhancing quality of life and contributing to a more  successful outcome, and specialists can capitalise on their unique position to encourage them to strive for the advantages that these approaches can offer. All patients should be supported in wanting to be ‘exceptional’ patients.

4. Respect – understanding what matters most to each patient

A cancer specialist’s role is to offer their expertise for their patient’s benefit, while at all times respecting their autonomy and individuality. They must never lose sight of the fact that it is
the patient who will bear the long-term consequences of treatment choices. The specialist’s role is to listen and understand what matters most to their patient, and any approach that is safe and that could help in some way (physically, emotionally, psychologically, spiritually) must be respected and supported. Faced with an existential threat, patients need all the encouragement they can get, particularly when it comes to efforts to help themselves.

5. Trust – becoming a trusted ally

Faced with immense challenges, patients need to feel that oncology staff are on their ‘team’, looking out for them and for the best possible outcome at all times. This requires clinicians to be interested in, and respectful of, patients’ efforts to save their own lives. A climate of open sharing and trust must be fostered and encouraged in order to support the best outcome and avoid patients withholding information or taking risks.

6. Open-mindedness – wellbeing takes much more than good medical treatment

Cancer is not well understood and therefore the ways of supporting recovery are also unclear. Oncology has much to offer, but so do many other specialities, as do patients and carers themselves, who often become experts on their own condition. A willingness to embrace the uncertainties of their own profession positions clinicians alongside their patients, supporting
them in facing an uncertain future. A ‘team effort’, involving a wide variety of support, benefits patient experience and outcomes.