Death by acronym

I’ve become increasingly fascinated by palliative care over the past couple of years. Not you understand because I’m expecting to die soon, but because it is such an emotive subject. Modern medical science is so advanced that there are far more decisions to be made as end of life approaches.

Thinking back 30 or more years to when previous generations of my family died, it is quite likely that the condition that brought about their demise would not prove fatal today. This is certainly true of my mother and two of my grandparents. Recent media controversy over the use of the Liverpool Care Pathway illustrates the point; increasingly, we have to choose when it is time to die.

And so not surprisingly the NHS, hospice movement and the many charities that provide care to the dying have some very complicated care pathways, protocols and practices. They all have to balance what’s best for the patient with what is lawful and ethical. It can be something of a minefield.

But what I’ve come to realise, working with a hospice charity, is that this complexity and caution, whilst understandable, can also slow innovation. There are challenges around philosophy; not all organisations agree on what is best. There are challenges around partnership, because each organisation has an overhead to maintain. Then there’s the challenge around funding. Our ageing population means death rates are increasing, yet NHS funding is reducing in real terms.

The answer to the cash conundrum is charitable giving. Because death is such an emotive subject, people give freely and willingly to charities working in this field. Independent hospices on average raise almost 60% of their running costs by community fundraising.

Yet to establish a new independent hospice today would place an almost impossible burden on both statutory funders and charity fundraisers. NHS funding is going to be very hard to win. To raise perhaps £1.5m a year from a community of 250,000 people even harder. Those already established struggle; areas where there is no hospice make do without.

So what is needed is innovation. Not in terms of policy, practice or patient pathway, but in terms of mapping what exists against what is most desirable; identifying what excellent looks like. This enables the gaps to be seen, not only by practitioners but by the wider public too.

The clarity this provides will motivate people to give. Both capital and revenue fundraising is only possible when the acronyms and jargon are converted into clear, simple messages. Then, and in my view only then, will the rate on innovation accelerate.

You see once ordinary people understand the challenge, and start to support it financially, the challenge changes. People talk about how and when, not if and where. Death by acronym is slow and painful. Let’s make it clear what is needed and share the challenges we face using words everyone can understand. Only then will those at the grassroots truly feel able to make things happen.