NCRI Cancer Conference 2010, 7 November 2010, Liverpool
Professor Jessica Corner – Macmillan Cancer Support and University of Southampton, UK
Improving the care and support of people living with and beyond cancer
This afternoon I am hosting a parallel session at the conference which is bringing together researchers from the UK and the United States to talk about issues of cancer survivorship. By that I mean what it’s like to live after cancer once you’ve finished primary cancer treatment.
What has been done to tackle these issues?
In January of this year, after quite a long period of work, the Department of Health published something called The National Cancer Survivorship Initiative Vision Statement which is a document, as part of this initiative, setting out what we think needs to happen to better support people after they’ve had cancer and cancer treatment. I think before this time actually very little emphasis or thought had been given really to what issues, what problems, people who have had a cancer diagnosis and treatment have after they’ve finished their treatment journey. It’s amazing to think that for all the investment in research and treatment and the NHS and so forth, actually almost no consideration had been given to that bit after cancer treatment or the long term consequences of having had cancer or treatment, and there can be quite a lot. Before 2008 we actually didn’t even know in this country how many people are living with a cancer diagnosis because all the emphasis had been counting the number of people newly diagnosed and also the number of people who had died of cancer. We hadn’t actually done anything about the bit in the middle which is the number of people living in an on-going way with cancer. Now survival rates for cancer are improving that’s getting more important because people are living quite a long time or being cured of their disease, and it’s important that we know what are the issues that they are left with.
What issues have been raised by this initiative?
The initiative sets out five shifts that we think need to happen in order to improve the situation for cancer survivors, those people living with and beyond cancer. Firstly, and probably most importantly, is a cultural shift, a whole cultural shift, around how we approach that time after cancer treatment finishes, from one where the focus has been on just inviting them back for tests and visits to clinics to see whether everything is all right, really checking whether cancer might have come back or there may be any further signs of the disease, to one where we are really thinking about helping people get back to their normal life, the life that they led before, focusing on rehabilitation and recovery rather than do we think that they might have any signs of disease. Because really the infrastructure we have around that isn’t really addressing long term care and support, so that’s very important.
The second shift is around actually providing a care plan for people after they finish primary treatment, with information about what they might look out for, what things might happen to them, what should they do if they’re worried and who should they come back. And also just to identify whether they’ve got any problems that might need some sort of support or care. So an assessment and a care plan, very important.
A third area is about saying that we think that we need to enable people to manage their condition for themselves and we need to give them support to do that, so knowing a lot about how to manage, so we’ve got a whole emphasis on supported self-management for the long term. The fourth area is about recognising that for some people there are on-going complications of cancer or cancer treatment and we need to recognise those. Sometimes they’ll occur years possibly after cancer treatment, and we need to put more emphasis in recognising those and giving specialist treatment and support for people who have them. And then the final area is about better data, better recording of things and research into the on-going health needs of people who have had cancer.
Does this initiative consider psychological care as well as physical care?
It’s not just physical, it’s about the emotional recovery, about the social effects of cancer. One of the work streams of the National Cancer Survivorship Initiative, for example, is a whole area about employment issues and financial issues after cancer. So there’s quite a significant
proportion of people we know who don’t get back to work, who were employed, had jobs, but actually don’t manage to get back to work for one reason or another after cancer. You think of the financial consequences of that to families and the morale and all the rest of it, so again a much greater concentration on that as an issue, and that being part of a health care professional’s job to think about it, whereas in the past I don’t think it was.