I mind the gap: old people, cancer, health charities and co-morbidities
I remain very interested in what happens to men and women aged over 75, with and at risk of cancer. I remain very interested in the considerable ambivalence of cancer charities towards what happens to men and women aged 75 and over with and at risk of cancer.
I wonder, out loud and at length, what any single issue cancer charity thinks the phrase ‘cancer is largely a disease of ageing’ actually means. None choose to trumpet their concern for older men and women in particular; is that because they’re old and no one likes them? None claim them as a key constituency and only Macmillan conspicuously do any advocacy for this group.
I don’t believe Macmillan do it so no other cancer charity has to.
Prostate Cancer UK recently used the phrase ‘prostate cancer is not just a disease of ageing’ neatly, and unfortunately, demonstrating their ageism. The implication seems to be that prostate cancer is only truly significant when younger men are attached to the agenda. That’s Movember's schtick, not theirs, surely? Presumably, if prostate cancer is considered ‘just’ a disease of ageing it’s doomed as a key message because of the stigma by association with old people? Who’d feel secure with them as their advocacy group when you were a bloke aged 75 or more? It won’t be deliberate marginalisation. They have just adopted the unthinking status quo; no innovation to see here - move along please.
The ambivalence with which older men and women are regarded by most cancer charities is quite startling. Their lack of any vision for what "an ageing society" could mean for their impact, profile and services is even more so.
Old people have been exposed to dismal messages about cancer their entire lives. Their age means they will have the most chances of any population group, to be personally buffeted by cancer's effects on family and friends. Low expectations and deep fears may run particularly powerfully as a result. How much does hopelessness about what could be done if they are diagnosed with cancer contribute to their own worse outcomes? How much late presentation - the most self-defeating of outcomes - occurs as a result? Once through the doctors’ doors cancer charities should be asking how primary and secondary care respond to older faces. Just how quick off the mark are they, in sorting things out with compassion, diligence and intelligence?
I’ve had a recent go at refreshing my awareness of the gap where old people should be and most cancer charities are not. In one recent week Cancer Research UK issued a research strategy, Macmillan did a State of the Nation report in cancer and some economists at the University of York published on co-morbidities.
On 29 April 2014 Cancer Research UK were in the news for their research strategy. Half of people diagnosed with cancer will now survive a decade or more, double the rate from the 1970’s. Progress then. The story was based on the PDF to which I now refer, called ‘Beating Cancer Sooner. Our Strategy.’
I'm looking for older people.
The cover first. There are two adult women, aged 35-40ish and one adult man, aged 70ish - and three children – one a baby, one about 7 and a girl of about 13. That’s six people and of them three are under 15, and none obviously well past 70. Cancer and no old people? Hmmm. It is a disease of ageing.....
As it turns out, one of the adult women on the front is inside the document reflecting on her late mother’s lung cancer. She had been 71 year old when she died. I agree that this lady’s story is an important one and, as she had died, she clearly could not talk for herself. But about the imagery and messaging about age, inequality, discrimination and cancer won’t ever get through, if older people aren’t seen, or heard. If this become habitual, inclusion of younger people’s voices and faces substituted for older people’s could promote a pernicious aversion to greying that is entirely counterproductive.
I’ve written about this before and it is still a problem.
This is important. Old age should be visible and have its own voice, especially since this CR-UK document has other problems with old people, in a disease of ageing. The words old, ageing, aged, elderly and older do not appear - except in a couple of places in reference to e.g a 13 year old. I agree children and people of working age have a place in the public representation of cancer. But what about older men and women in this quintessential disease of ageing? They have a major stake in progress against cancer, and it's not just the legacy income they promise.
The focus in cancer research for old people could be particular to them – e.g. on beating cancer through palliation and not the usual beating cancer Full Stop. CR-UK’s ten year survival measure is good news but it doesn’t work well for old people at diagnosis, yet. Is a 90 year old likely to get to 100, all other things being equal? Not yet, no. That doesn’t mean ‘don’t bother’. It means ‘bother differently’. [Or measure differently, in this older old age group]. By palliation I don’t simply mean morphine on demand, I mean researching the ‘holding at bay’ treatments. Progress would be inventing ones that could extend survival, or remove cancer as the cause of death and not compromise quality of life. These will be useful in the unfit 65 years olds with fatty livers and poor life expectancy, too.
On to Macmillan. They’re forging ahead with old people. They are the ‘go to’ cancer charity advocates. They got quite sparky, shouty and pointy in an ‘I spy an upcoming election’ kind of way, in their ‘Cancer in the UK State of the Nation 2014’ report released on 2 May. This was later in the same week that the CR-UK strategy popped up. Survival, treatment and carers all got a look in. It was mostly treatment and survival but care (unspecified) was mentioned several times and I hope rehabilitation, psychological support and any stab at integrating cancer support into social care will develop on their ageing agenda, in time.
And so on to co-morbidities. The Centre for Health Economics at York University published “The importance of multimorbidity in explaining utilisation and costs across health and social care settings: evidence from South Somerset’s Symphony Project” It was complicated and mostly off topic so I only have a simple point – that 78% of the 6,000 people with cancer in the study had between one and six additional conditions to contend with at the same time as their cancer. And 50% of those aged 85+ had three or more chronic conditions. Macmillan visited co-morbidity in December 2012, in their report ‘Cancer Services Coming of Age: Learning from the Improving Cancer Treatment Assessment and Support for Older People Project’. In one case study they showed that seventy percent of patients screened through a thorough geriatric assessment had three or more co-morbidities, alongside their cancer.
This is a particular challenge to cancer charities, demanding they locate their innovative heart and minds to work out how to help. I wish I believed they knew this.
Charities, rightly, go an about integrated care pathways when campaigning at others but this is not something they reflect in their own ways of working. I worry that the single issue cancer charities are far too quick to revert to self interest and as a result will never be much help in assisting, informing and supporting old people with cancer and co-morbidities. They know service users are also potential donors and no one wants to draw their attention to some other health charity, even if it might be good for them. A person with diabetes and cancer can be one or the other at different times in relation to each health charity but can never be both at the same time. Co-morbidities smash the illusion of health charity lip service to ‘person centred’ care, since ‘persons’, inconveniently, don’t get one condition at a time, especially as they age. Charities for cancer, other health conditions and in ageing could add value to all their efforts with more collegiate working for and with older people.
How about that?