Robert Ashton is left flummoxed by the confusing architecture of jargonistic accronyms and non-joined-up processes encountered in setting up a new hospice. Surely there is some way to ease the burden, he asks.

I’ve recently been hired by a group setting up a new hospice. They’ve been raising money for a few years now and are about to put in their planning application for a ten-bed unit. This has also brought to a head some interesting tensions between local palliative care providers. Yes, there’s even competition between organisations that work with the dying.

So as part of a crash course in end-of-life care I went along to a local Marie Curie conference. I wanted to meet the key players and most importantly of all, see how this important sector is responding to change. There’s been a recent review of palliative care funding and a new tariff system being introduced to standardise funding.

I don’t know if you’ve visited a good hospice. They are amazing places, staffed by people who know that life is for living, right up to the last minute. Hospices are no longer places you go to die; they’re places that make sure you squeeze every day of happiness out before the condition you have developed turns out your light.

What I encountered was perhaps not the best introduction to this sector. The meeting room was freezing; mortuary cold in fact. The AV contractor was still setting up 15 minutes after we should have started and people were getting grumpy. At coffee time we moved rooms to somewhere warmer. This was more comfortable, however I then couldn't hear the speakers as the AV system had been left behind.

But I was happy to tolerate all of the discomfort in return for hearing the latest innovative thinking in palliative care provision. After all, there’s nothing wrong with a little discomfort in the pursuit of progress.

What I witnessed however was a classic example of how people cope with what they have, rather than innovate and create something new. The care pathways described were complex to say the least. When graphically projected onto the screen they resembled a ball of string after the cat had finished playing with it; tangled and difficult to unpick.

Then there were the acronyms. Many had become verbs, creating a language I could not understand. Others I spoke to seemed to have also struggled to translate what they were hearing. Some said it was the same as they’d heard last time, so perhaps easier to interpret the second time around.

I did understand the ‘yellow folder’. This is literally a yellow folder crammed with helpful information and forms that you get when reckoned to be in your final year of life. I guess someone goes through it with you because otherwise, it would be hugely daunting to be met with a pile of paperwork soon after getting your own personal bad news.

But I’m not writing this to be critical. The people who work in this sector do a tough job. They are compassionate, caring and professional people. It’s the systems that seem to be at fault. I guess death is tricky to deal with and organisations and individuals need to be sure they can show they acted wisely and appropriately.

But why is so little joined-up? Why when most would prefer hospice care to dying in an acute hospital are there so few hospice beds? Why is so much of the best palliative care reliant on voluntary income, rather than being funded by the NHS? Why, when so many hospital beds are ‘blocked’ by those close to a predicted death, has the true cost of this not been factored in to the hospice funding equation?

I’m sure many of the answers exist, but they do not fall easily to hand when you look for them. All I find are acronyms. My client will soon have planning consent and be ramping up their fundraising campaign. They will be providing hospice beds in an area where, last year, only one person managed to find a hospice bed in which to die.

You don’t need acronyms to describe what’s needed. You need clear, coherent communication to clear out the quasi-competitive crap and concentrate on the efficient connection of care with those in urgent need of it. The answers are all there somewhere. Can you help me find them?