Andrew McDonald: Let's talk about cancer, one year on

Andrew was, until April 2014, Chief Executive of the Independent Parliamentary Standards Authority (IPSA). He was diagnosed with Parkinson’s disease in 2007. In 2010, he was diagnosed with prostate cancer which has since been determined to be incurable. On 24 June 2014, Andrew delivered a lecture exploring his experiences of living with an incurable condition. Here he reflects on the situation one year on.

Andrew McDonald, Let's talk about cancer

Much has changed since Chris, Martin and I delivered Let's talk about cancer on 24 June last year. For a start, Marie Curie has changed, recognising its remit and role in supporting people living with a terminal illness regardless of their diagnosis. And it has sharpened its focus on supporting conversations about terminal illnesses. I strongly welcome both changes.

But much has stayed the same. The pressure on NHS funding remains. And, if anything, there is now a greater risk that managers and clinicians will regard improvements in the patient-doctor dialogue as a marginal issue. Hospital administrators are, understandably, preoccupied not by rich conversations but by the struggle to keep their hospitals solvent. The costs of poor communication did not get a look-in during the election arguments over NHS funding.

And so what of the argument I set out a year ago? Well, I am delighted that you can now see the lecture online and judge for yourself. But, in summary, I argued that poor communication about cancer was not only affecting patient outcomes, but it was wasting public money. I put forward my analysis of what was awry and how best to improve things. My proposal was that we did three things.

First, that we recognised that the NHS should place a renewed emphasis on leadership and teamwork. Without this, deficiencies in communication and poor hand-offs from one professional to the next were likely to continue.

Second, that we did more to improve the continuity of care so that patients were more likely to see the same clinicians on each hospital visit. Difficult conversations about life and death can only be conducted within relationships of trust and mutual understanding.

And third, that the most effective short-term remedy for poor communication was most likely to be delivered through an investment in more specialist nurse practitioners trained to guide the bewildered and the frightened through the system.

I recognised at the time of the lecture that this agenda was more likely to acquire traction if it were supported by a cost benefit analysis demonstrating the cost to the NHS of poor communication (evidenced in unnecessary repeat visits to hospital, drug regimes misunderstood and so not followed etc). This would be buttressed by a costing of interventions to improve things, the most promising of which still seems to me to be the employment of more nurse practitioners.

To that end, Marie Curie convened a panel of experts to consider the nature of a possible research project. Subsequently, a health economist was hired, initially to survey the literature and to make an assessment of the available data. This work yielded the conclusion that surprisingly little work had been done in this field and that we were unlikely to find UK data which would demonstrate conclusively the cost of poor communication. (That, of course, does not mean that there is not a cost. The question is whether the cost is demonstrable.). The price of interventions is, of course, much easier to calculate. Not deterred by this, Marie Curie has commissioned a second phase of research. This time round we are looking to see if the argument can be sustained by reference to overseas data or by the use of proxy data in the UK. We should know the outcome by August.

And then what? Well, we might either have demonstrated that the argument advanced in the lecture can be backed by data or we will have learned that there is a gap in the data and the accompanying research. The latter conclusion might prompt the pursuit of further research. But if we find that we can mount the argument on the basis of existing data, we can make a concerted effort to change the conversation about cancer and, by extension, other life-limiting conditions.

What would success look like? Well, for a start 'communications skills' would cease to be a topic of marginal interest and the need for richer conversations would move centre stage. Because it makes economic sense. And because we will be failing patients and their loved ones if we do anything else.