'Routes to diagnosis' - cancer, emergencies and the elderly. What do the cancer charities think?
This post combines my interest in cancer awareness with my concerns about the absence of the elderly from most cancer charities’ agendas. I suggest two things. That 1) the single issue cancer charity sector should cast a properly self-critical eye on their role in ‘cancer awareness’ and 2) that it is now obvious that there is such a thing as the wrong kind of cancer patient - and that’s an old one.
It’s been a few days since the ‘Routes to Diagnosis’ paper was published by the British Journal of Cancer (Press release Friday 21 September 2012). The National Cancer Intelligence Network (NCIN) wrote and released the report and the story was covered by the BBC and a few other outlets. The evidence showed that almost a quarter (24 per cent) of all cases of cancer are diagnosed as a result of emergency admission to hospital.
An extra statistic was presented in the Press Release. [I can’t find it in the original paper but with the aid of a calculator I’ve worked out where it comes from.] As a proportion of cancer diagnoses in elderly people, diagnoses via emergency admission goes up to nearly a third (31 per cent) of cancers in men and women aged 70+. That’s far too many being diagnosed through emergency admission to hospital.
Emergency admission is a massive problem. It is linked to considerably shorter survival.
There was a blog post about it from Cancer Research UK too; the blogger got stuck into the evidence, speculating about what it might indicate about healthcare letting down elderly people. Then the wind blew and the tumbleweed tumbled. I waited for any of the single issue cancer charities to leap in, comment on where they felt cancer policy is failing, with their take on the huge disadvantage suffered by the elderly of their constituency and, naturally, what they proposed to do to sort it out, or promote their own campaigning perspective.
I waited to see who’d ‘speak’.
The Brain Tumour Charity did. [Their format is a bit odd on my computer. You too might have to scroll down the page to find it] Their’s was a brilliant intervention actually, mentioning that, as far as they were concerned, quality of life deserved as much consideration, alongside the starker one year survival measure. Yep. I go along with that. Macmillan also spoke up, joining Cancer Research UK with some observations. Neither of those are single tumour charities though.
No other cancer charity has commented, as far as I can find.
I understood two things when I read this paper and spotted the lack of response to it. I saw indifference to older people and also the abject failure of the prevailing model of cancer awareness. Single issue cancer charities contribute to both. A quarter of all cancer cases identified after emergency admission and over a third of them in the over 70s is far too high.
This is not as it should be. When the press release used brain, pancreas and liver cancers to illustrate the problem with older age and emergency admission, every other cancer charity sat back. These old people were old, but not their old and so became some other bugger’s issue. Perhaps if the individual cancers had never been disaggregated from ‘cancer’? Moot point. Who knows? Cancer charities are seemingly unaware that, if they had chosen to, they could have taken this story as potentially symptomatic of the whole cancer and inequalities picture in older age.
Only one cancer charity noticed it was a big story. No one else had any thoughts or interests in older men and women that they wish to demonstrate, no organisational strategy they wanted to publicise that would tackle cancer issues in elderly people, no ‘take’ they wish to promote, no line they want to claim to advance the cause of reducing the numbers of men and women, especially those of older age with cancers diagnosed through acute attendance at A and E.
Just how far is the sector disengaged from elderly people and their issues, apparently mute about the plight of men and women aged over 70 with or at risk of cancer and, in this case, diagnosed after an emergency?
There will always be some people who are diagnosed with cancer as emergencies. Their first sign of cancer might be a acute onset symptom such as their first seizure, for example. But with a quarter of all diagnoses in everyone, and a third in people over 70 what is going on? I shiver. How many ‘bad news’ consultations are actually delivered in A and E, maybe in chaos, maybe to unsuspecting patients, maybe not by cancer service professionals with the full range of expert patient support and information on tap? I realise diagnosis as a result of emergency admission does not mean all diagnoses are given in emergency admission units but I bet that happens. Any emergency rush leading up to a diagnosis can easily compromise the quality of care that can be taken when delivering it, especially if urgent intervention is on the cards. ‘Emergency’ is far larger a feature in the cancer journey than I previously suspected. Does emergency admission as a route to diagnosis in the elderly also explain some of why so many old people can’t recall their clinical nurse specialist – as a recent patient experience survey revealed?
Medical system delays needs to be addressed. No surprise there. That’s what the paper concludes and why they were assessing a methodology for looking at routes to diagnosis in the first place.
Patient delay also need to be assessed and addressed in emergency presentation, in particular as a failure of cancer awareness. The most dysfunctional delivery of cancer awareness comes from the single issue cancer charities, wasting a considerable total resource with individualised dibbling about in each cancer. They are unlikely to solve the problem through dissipating their talents with self-interested, cause-based ‘awareness raising’ endeavours. They may even sow confusion and exacerbate cancer unawareness.
CR-UK are having a go with NAEDI but I’d like to see the single issue charities take their own lead too, by being much less self serving with their individual awareness agendas, rather too often led by fundraising concerns, not service delivery. To make an impact on population awareness they need to think and act collectively, on design (evidence based, you see) and delivery of a key awareness agenda on cancer alone that the public can grasp as digestible health information. There is no place for the current massive curriculum of site specific symptomatology that only works by luck. Roll away its rusting bulk; recognise it for the total scrap it really is.
The charities also need to refine cancer awareness agenda to make it fit for purpose in informing the over 70s, with their population specific needs in mind, NOT the charities’ litany of tumour specific ones. Cancer charities need to demonstrate more knowledge about the epidemiology of all symptoms and co-morbidities in this age group, to see how cancer might fit in and design a cancer awareness agenda that might actually work. They also need to inform themselves about the social characteristics of these elderly people. Of those diagnosed as emergencies, who lives alone, is a sole carer, still has adult dependents or might live in communal housing etc.etc.? These may all have a bearing on what those older people know about cancer or symptoms and how they respond to it, or them.
All charities are happy to accept legacy income. Legacy income will be from a lot of elderly people. Why not pay them a little attention in return? You might get more income.
Which cancer charities have, or are developing, policy, research and campaigning profile and expertise in elderly people and cancer? No one seems to be claiming it, which is….. odd. Cancer is a disease of ageing, mostly.
Maybe I should ask the Cancer Campaigning Group what they think. Mind you, they only reported the study. They didn't comment on it. I wonder who they'd identify as the sector leader on older people in the single issue cancer charity world.
It would be good to be able to spot what the cancer charities really know, think and do about old people.