Why health professionals shouldn’t feel the slightest sense of professional shame when they read Nothing Personal:
I’d hoped the choice of title would convey not only the need to personalise cancer care, but a message that doctors, nurses and others involved in cancer who read this book should not take it (the uncomfortable content) personally. I’d even considered inserting ‘HEALTH WARNING! – uncomfortable reading’.
I’d tried to convey the message in the ‘Author’s Note’. My story is woven around poems written at the time of treatment, about which I wrote:
‘Poetry can be very emotive. When linked to experiences associated with a caring profession, it may be distinctly challenging and difficult to accept. I hope the reader will look beyond the emotion to the issues raised. My intention is to ‘do no harm’.
The closing chapters refer to the many improvements in cancer care since I was treated, my involvement with several organisations as a lay representative, my admiration for those working towards change and the healing effect of working alongside such doctors. But Chapter 59 is a reminder that there is still room for improvement – because even today I have friends who are getting a raw deal in cancer care – and social networking and websites show it’s no good just patting ourselves on the back and pretending otherwise.
Dr Kate Granger’s book ‘The Other Side’ echoes some of the issues in Nothing Personal and is a wake-up call. Dr Granger, working in Leeds, was recently diagnosed with a rare cancer which had spread. Her experience of care was not enviable. Her courage and generosity in sharing her story (let alone the effort it must have taken) so that lessons will be learned is an example of the new breed of doctor and the patient-centred up-swelling of an unofficial ‘movement’ of doctors and patients, others who want more compassion in healthcare (see Robin Youngson at http://www.heartsinhealthcare.com).
‘So it is heartening when NHS staff, whose own family or friends have had bad experiences of healthcare, admit to shortfalls and try to raise awareness among their colleagues.102 If there is no room for complacency, there is certainly room for celebrating progress to date. Medical journals increasingly invite patient contributions and even devote whole issues to the patient perspective 103 Patients’ testimonies are being heard and increasingly acted upon and when patients speak out, 104 they may also be supporting healthcare professionals by raising their concerns. 105,106 Such loose ‘partnerships’ complement user involvement in service planning and implementation.
Encouragingly, the whole cancer community now seems geared up to improving services…’
I’ve always felt the need to apologise before recounting my experiences to anyone working in health. I found it extremely difficult to tell any of it to my new GP – I did not want her to feel the slightest bit bad about it, to take on any responsibility just because she was in the same profession and so linked even slightly in some way to what happened. But I knew from defensiveness encountered initially when I tried to raise issues that what happened could be too hard to accept. And defensiveness limits awareness and blocks acceptance.
When I wrote an article for the Health Service Journal, I began by pleading with the reader not to see anger in my words, though this was edited out. A couple of pages in Nothing Personal explain that I did not, could not feel anger – that I wished I could have done. It might have been more healthy. I felt dead inside. But people sometimes see what they expect to see and the ‘anger of the cancer patient’ is well documented.
I feel extremely fortunate that so many doctors have written positive reviews in medical journals – the acceptance by the medical profession has been amazing. And when they tell me they are using the book in medical training I know it’s all been worthwhile.
So, if you are working in a caring profession and you read Nothing Personal, please be aware that the reason for writing it was to raise awareness of issues; to seek acknowledgement and change so that other patients would not suffer unnecessarily as I had.
For how can there be improvement without acknowledgement that change is needed?