National Cancer Survivorship Initiative Vision

As part of implementing the CRS the National Cancer Survivorship Initiative Vision was launched in January this year. Survivorship is the kind of word that might send shivers down the nation’s collective spine but the goal can be simply expressed. Improving survivorship will enable people who have been diagnosed with cancer to lead as healthy and active a life as possible, for as long as possible – with no assumptions about how long this could be, the type of cancer or how long after cancer any effects might occur.

 

The evidence from the National Cancer Survivorship Initiative Vision suggests that the quality of cancer survivorship is seen as a right for the young but a privilege for the old. 

 

There are excellent reasons for not unbundling ‘survivorship’ for every possible interest group on inequalities but the Vision is written with a default ‘cancer survivor’ population of 18-64 year olds in mind. Older people get short shrift. As the Vision document itself points out, 63% of cancer survivors are over 65, the majority as any primary school mathematician will know. Cancer is, largely, a disease of ageing. So where are they, in this Vision?

 

Whilst the photographic illustrations do include a good range of obviously older people, the case studies featured or mentioned in passing are only 31, 49, 55, 57, 57 and 59 years old respectively. There are no references to ‘over 75’, ‘aged’, ‘older’ or ‘elderly’. The only uses of the word ‘old’ come in phrases such as Patient X ‘55 yrs old said…’

 

There are, however, 48 references to ‘young’. Part of that is because there is a specific work stream related to them. Of course, they have particular issues, and there is no complaint about the appropriateness of this, but so do older people and their potential problems are major, and often quite different. By only mentioning the younger populations - children, adolescents and people of working age - the Vision document is promoting the invisibility of older men and women on the cancer agenda, rather than challenging it. 

 

Many cancer charities were involved in putting the Vision together and have perhaps also helped hide older men and women. The cancer charities have been unable to provide older men or women as examples for case studies and should be challenged vigorously on that.

 

This is a real problem. Breast cancer charities already acknowledge they have used younger women so frequently in marketing that post-menopausal women are unaware they are at greatest risk of getting breast cancer. One of the ovarian cancer charities hasn't learnt and is striding off in the same misguided direction by using Emilia Fox, aged in her mid thirties, to raise awareness of ovarian cancer symptoms. Ovarian cancer is predominantly a disease of older women, with the highest incidence in women aged 65 and over. It’s not just a women thing. The average age of men diagnosed with prostate cancer is about 72 and of men dying from prostate cancer, around 80. Men aged post 70 do not feature in high profile awareness raising from the prostate cancer charities.

 

Older people with cancer experience it in a uniquely complex way, in comparison with people at earlier life stages. If you are older, with cancer and heart failure you may be hard pressed to tell which of them is causing your fatigue. Indeed, your fatigue may be because of something else entirely - undiagnosed depression because you have heart problems and cancer. Your Parkinson’s Disease may be causing you florid physical symptoms and your GP is intent on sorting those out but you find your biggest problem is your debilitating anxiety about a recently diagnosed cancer. Older men and women’s potential frailty, cognitive impairment, co-morbidities and impairments of ageing etc. will sabotage the overarching ambition of the survivorship agenda to deliver cancer services in an integrated patient-centred fashion.

 

The comments in the Vision, on economic impact of cancer were partial and fail to spot the pressures on older people.  There are grave economic impacts of cancer and they are certainly felt in working households, but working households were the only households mentioned. Office of National Statistics figures released on 27/01/10 show that, in 2007/08, an estimated 2 million pensioners in the UK were living in poverty, and in 2007, over 30 per cent of households of single people aged 60 or over in England were in fuel poverty. Pensioner economics, parlous for reasons unrelated to employment, will be just as deleterious to their recovery from cancer as that of the redundant, sacked or unemployed.

 

Much attention is paid to ‘supported self management’ in cancer survivors. Just how viable is this in older people? How does this fit within a context of multiple co-morbidities and impairments which can arise for older people, and their partners? A system giving care and support which empowers cancer survivors ‘to become increasingly independent and live autonomously’ might have a wholly different effect for older people. Systems are thoughtless. Thoughtless application of ‘supported self management’ could quite easily lead older people to feel as if they are simply being cast adrift.  

 

Similarly, how does the commitment to training and education play out in older men and women?  Older people are certainly not be beyond learning but they could become victims of indirect discrimination and miss out on the chance if they won’t travel at night, or can’t travel easily, or at all. Maggie’s Centres feature as an example, providing data on their “getting started with cancer treatment workshop” . Just how robust is that data in the 63% of survivors over 65? Prejudice suggests that there is a sudden drop off in attendance in men and women over 75, where a third of new diagnoses are made. I look forward to being contradicted and surprised. Is anyone trialling a model of training and education in older people? One for people who live alone or who are also carers would be interesting.  

 

Finally, there has to be a debate on the ethics of treatment and care in older people for cancer.The commendable drive in the Survivorship Initiative to much more explicit assessment, monitoring and planning does means that ethical concerns will arise. Demand, supply, rationing, denial of treatment, afflicting people with marginal treatments, living wills, the squeeze on public spending and a huge increase in the population of older men and women will take complex effect in the years ahead.

 

This absence of old people in a Department of Health document, written with the help of many cancer charities suggests that there is no grasp of what survivorship in older people with cancer should look like, and no sound where the voices of the advocates should be heard describing it. The societal indifference to older people has permeated far further than one might have hoped.

 

Older people with cancer are invisible. Making older men and women as mainstream in CRS implementation as they will be in service uptake is the best way to address inequality effectively.