My wife died last year from cancer after battling it for almost three years. The physical symptoms were so tough: pain, nausea, loss of mobility, and others too distressing to talk about here. But the suffering she endured from the moment she received her diagnosis, until she entered the hospice where she ended her days, was almost entirely down to the difficulty she had coming to terms with her disability. It was the deep depression and rampant anxiety that very quickly spiralled out of control that made her life – and the lives of those closest to her – so difficult.
I laid out what she went through in a article I wrote for the Guardian in December, which drew a huge response from the public and clinicians. Parts of
it inform this article.
Sarah was unwilling to go outside – not even to sit in our lovely garden, not even to listen to the birds. She cried every day, sometimes all day. She couldn’t eat, couldn’t read a book, didn’t know what pleasure felt like. In the last year of her life, all she could do was sit silently on our settee, watching dreary daytime television.
And yet, shamefully, she never saw a psychologist or a psychiatrist, she never had a serious mental health assessment. Yes, she was offered counselling and cognitive behavioural therapy by Macmillan Cancer Support, the hospital and our local NHS services. But the waiting lists could be months long, and the people who delivered the therapies were often inexperienced or just not knowledgeable enough about terminal illness. She would only get a few weeks of therapy, as if somehow her problems would magically go away, only for her to go straight back on the waiting list.
Not that the sessions helped anyway. She’d leave a CBT session clutching leaflets she was supposed to go away and read – an impossible task for someone who was often too stressed to even look at a newspaper. “Go and do some gardening,” one of the sheets said: not a very sensitive thing to say to a disabled woman who loved gardening but would never be able to do that again.
She was only offered antidepressants a year or so into her illness, but steadfastly refused to take them until she was admitted to a hospice. It was her choice, of course, though in the hands of an experienced psychiatrist she might have made a different decision or had different options.
I make no criticism of our dedicated and caring NHS clinical staff. They are not to blame for a health culture that has always been more interested in the physical than the psychological, though the result of that imbalance is often tragic, especially when it comes to people with terminal illness.
When her physical symptoms were at their worst, she paradoxically suffered the least, and that I believe is because her psychological needs were finally – at least to an extent – addressed. It’s so sad that she never experienced anything remotely like that in the three long years that preceded her demise. We can only hope that there are doctors, nurses, scientists and politicians who feel strongly enough to put time and energy into finding ways to help these most vulnerable of people, and make the suffering go away.
The article touched a nerve and I have spoken to psych-oncologists up and down the country as well scientists, a politician, a charity, family and friends. And that has encouraged me to at least try to do something about it, and to convince our policy makers to sit up and take notice of the shameful neglect of some of the most vulnerable people in our society.
I hope to go to Parliament to encourage MPs to hold an enquiry, so that we can encourage scientists and funding bodies to devote time and cash to research
new therapies that support the mental health of those with terminal illness, or evaluate existing ones. We need to understand how the NHS can effectively provide for the psychological needs of the dying and at least start to make the suffering go away.
Mike Addelman is a former journalist and now works as a communications professional in higher education
