Again and again those who have been through cancer treatment tell me that they don’t know what to do next. From the moment they were diagnosed until the moment their cancer treatment ended they were on a clear and well- defined path. As soon as they got to the end of the path there was no more guidance. ‘What should I eat? Is dairy ok? What about soy? Will it come back? Can I run? Should I run? Why don’t I feel better? Shouldn’t I be happier than this? Why me?’ These questions remain unanswered. Worse, there is no one to ask.
I am not the only person having that kind of conversation. Dr Mary Iver, head of Psychology at All Hallows College Dublin has been having them too. Needless to say Dr Iver is much better at harnessing a useful outcome from those conversations than am I.
Dr Iver leads research into the issues surrounding survivorship and is passionate about the provision of information and support for those who are no longer cancer patients. She has found that ‘ex-patients’ want and need support but there is no central provision. All health service care stops with the cessation of cancer treatment. In order to fill the gaps, many small organisations provide support, along with some charities.
Dr Iver argues that whilst this is necessary, helpful, well-intentioned and well-received there is no standard, no way of objectively measuring the benefits or of formally measuring the outcomes in a statistically significant way. All of the groups are small (when compared to a National programme). In order to scientifically judge the success or otherwise of an initiative, larger groups with greater consistency are needed.
A 2007 study asked a large group of cancer patients how they would prioritise research. The cancer patients wanted research into living with cancer and the emotional impact of cancer to be top of the list rather than biological and cancer treatment research.
It is Dr Ivers experience, and that of the research team conducting the 2007 study, that these priorities are largely ignored and that research into survivorship issues and the study of survivorship is decreasing rather than increasing. Ironically, the number of survivors appears to be at it’s highest.
Lectures to health professionals on the psychological impact of survivorship used to be far more commonplace than it is currently-who looks after the survivors? Should it be left to the charities to help them to face the anxiety, depression and fear of recurrence that is common? Many University level Psycho-Oncology courses no longer run and there is huge competition for the little funding for research into survivorship that is available. There is little collaboration between competing academics.
With the NHS under constant pressure to reduce costs it seems unlikely that it will be the organisation to take the lead in providing centralised, standardised care to those for whom it has previously provided such successful cancer treatment.
It seems that it will be the charities and individual providers such as well-being coaches and counsellors that pick-up the pieces for those no longer going through treatment for cancer, the ex cancer patients.
By Jennifer Young