Christine Rowland, Research Fellow, NIHR CLAHRC Greater Manchester End-of-Life Care programme and Division of Nursing, Midwifery and Social Work, University of Manchester
We were really delighted when our most recent research was published in April’s Palliative Medicine journal. But you always hope that the research you’ve often spent years working on might generate some wider interest, particularly the sort of interest that may make policy makers sit up and take note. Well, this Monday morning (3rd April 2017) was pretty exciting; our research made a bit of a splash and was covered by the BBC Breakfast show and BBC Radio 4’s Today programme!
Image: Professor Gunn Grande and Tony Bonser, family carer advocate, on the BBC Breakfast sofa.
The research itself is about cancer caregiving and end of life. Not something you usually chat about over your cornflakes on an average Monday morning! I suppose that for some people the topic can seem a bit depressing but it’s an area I am really passionate about and, actually, caregiving at end of life is a fact that around five hundred thousand people in England live with each year.
We know that people who are at the end of their life usually want to be cared for at home but this often isn’t possible without help from family carers. However, caring for someone else isn’t easy, and at end of life it’s particularly challenging. While we know that a lot of family members take great pride in being able to give the care that enables the patient to stay at home, the fact is, family members then often report ill health themselves as a result of giving care support.
Unfortunately, without information about the extent of the care given by family, they become an ‘invisible’ workforce. This means that they may be easily overlooked by policy makers, commissioners and service planners, so that family carers do not get the support they need themselves. This should be quite basic information so I was surprised to discover that numbers and statistics on end of life caregiving don’t really exist. Where they do exist they are from small samples – so probably don’t reflect a lot of people’s own experiences – or they don’t have much detail about what sort of care tasks people do.
To try and remedy this, Dimbleby Cancer Care funded our team to send a survey to people throughout England who had been bereaved through cancer. We wanted to find out what sort of care tasks people did to support their relatives with cancer and roughly how long they spent doing them. Over 1500 family carers responded. What we found was actually fairly staggering. On average, family members caring for a cancer patient at end of life spend around ten hours per day providing care; anything from providing emotional support to doing daily chores, administering medicine and monitoring the patient’s health. These ten hours a day may come on top of their own health problems or anything else they might need to do, like caring for a younger family or going to work. Some people spent a lot more time than this giving care – up to sixteen hours a day, literally every waking hour!
We also found that people spent around £370 in the last few months on providing care. This paid for things like extra medical supplies, extra heating on at home to keep the patient warm, or travelling to and from care appointments. That’s a lot of money that some families would really struggle to afford.
We’re still working on the analysis to see what the cost to the economy would be if the government had to fund this care instead of relying on family to do it for free. And that’s the really important point here because if we can put a financial amount on the care that is being given freely, then we are more likely to make policy makers and service commissioners realise how much carers are really contributing to society, and that they need to look after carers a lot more in return. If we can shout that loud enough, maybe get ourselves on the BBC and tell enough people then, who knows, maybe we really can make a difference. So, yeah, as Monday mornings go, this one was pretty exciting!
This blog is also published on the website of the Division of Nursing, Midwifery and Social Work, University of Manchester.