Doctor , what’s wrong? Making the NHS human again, Sophie Petit-Zeman.
In Your Face, Lia Mills
Sophie Petit-Zeman is a writer and journalist specialising in health, science and social care. Dr Sophie Petit-Zeman migrated from neuroscience and mental health research to communications and journalism. An award-winning writer, she has worked for all the UK broadsheets, a host of specialist journals, for the NHS, private and voluntary sectors in the UK and abroad. She has published two books: Doctor, What’s Wrong? Making the NHS Human Again (Routledge, 2005; read a review here) and How to be an Even Better Chair (Pearson; 2006). She has been director of public dialogue at the Association of Medical Research Charities since December 2004.
Lia Mills is an Irish writer. She writes novels, short stories and literary non-fiction. She has also worked on several public art commissions and as an arts consultant. Her first novel, Another Alice (1996), was nominated for the Irish Times Irish Fiction prize. Her second novel, Nothing Simple (2005), was shortlisted for the Irish Novel of the Year at the inaugural Irish Book Awards. Her most recent book, In Your Face (2007), a memoir of her diagnosis of and treatment for oral cancer, was named as a favourite book of 2007 by several commentators.[who?] Born in Dublin, she has lived in London and America before returning to Ireland in 1990.
The history of the NHS is that of an organisation established after a century’s discussion on the provision of health services to meet a long recognised need. It appeared at a time when Britain saw health care as crucial to one of the “five giants” (want, disease, squalor, ignorance, idleness) that Beveridge declared should be slain during post-war reconstruction. The cataclysm of war provided an opportunity that might not have been taken in quieter times. the NHS was noble in conception, and has been faced on the one side with ever increasing costs as a result of advances in medical knowledge, medicines and technology, and on the other with the financial restrictions inevitable in a centrally funded service with changing management dogmas and political beliefs. Whether knowing what we know now Britain would follow the same pathway is anyone’s guess.
Both these stories dealt with people who have been diagnosed with cancer and their experiences of the health-care system – 2 different health-care systems actually; the Irish one and the UK’s.
Sophie Petit-Zeman was working in Neuroscience and mental health research in the NHS before moving into communication and journalism and this book was her first novel – of sorts – in which she interwove this novel narrative about a group of very much interlinked characters and their experiences of cancer and the NHS with a factual dissection of the failings of the NHS and her own personal slant on how these could be remedied. The second, by Lia mills – an Irish fiction writer was her autobiographical account of her experience of cancer.
There were a lot of parallels in the issues so I’ve mainly dealt with them together, but the one big issue that the first piece deals with more explicitly is the actual healthcare system.
In Zeman’s story one of the first few sentences describes the NHS as a ‘dangerously crap system, and throughout the piece there is a great sense of frustration from all characters at the failings of the NHS, with both the system itself and the people working in it come under scrutiny.
The NHS came into being in 1948, after the second world war – the experience of the Second World War, when in 1939 an emergency medical service was instantly created as the country came under command and control, provided an example of what could be done, then the major upheaval of the country by the war allowed for major changes to infrastructure. Previously only those with the means to pay could afford healthcare and those who couldn’t had to rely on charity or go without – there was no national system.
• In ‘Doctor, what’s wrong?’ there’s a very clear sense of how thinly resources are spread
‘Trying to strike a balance between watchful waiting and alarmism while keeping an eye on the budget…screwing up, at times close to the edge of danger, while keeping an eye on the budget.’
and Zeman really raises the question as to whether or not doctors should have to act as budget managers and whether this is contradictive to serving the best interests of the patients. A very relevant problem at the minute, when due to the economic climate big cuts are being made to healthcare spending and doctors feel under pressure to move patients on quickly =- perhaps before they’re ready to leave hospital or even not admit them when they do need to be. One of the modern problems within the NHS and other healthcare systems is that more and more new drugs and treatments which are more effective ways of dealing with certain illnesses are being developed and yet it’s not feasible to make these treatments available to anyone – in a system like the NHS- should they be available to everyone? Which leads onto the idea of entitlement and I think in both stories, from the patient perspectives there is a sense of entitlement – the Taxi driver talks about a drug they don’t give everyone – even though they’re entitled, and the woman with the benign tumour in Mills’ story is ‘indignant’ she had to wait for a bed.
‘They accuse doctors of paternalism on the one hand but then they want people like you, like Geoff to have all the answers and ideally work miracles,’
‘There is a terrible instinct to find someone to blame.’
• Aside from the budget constraints there’s also a sense of crushing bureaucracy in Zeman’s piece;
‘I can’t bear the things I have to fight against to help them, things I have to fight against to do my job. So I end up strutting around treating patients like irrelevancies and proving I’m just as enslaved to bureaucracy as all the bad doctors.’
‘It’s up to other people to sort out the details.’
‘Just don’t ever let me get away with it if I say I’ve treated someone badly because I was trapped by the system’s complexity. It is god-awful and complex half the time, but I don’t have to be.’
Stemming from people who have no real experience working in health care setting directives and allocating funds without fully understanding how such action affects doctor’s work; affects patient’s treatment. Secondly continuous upheavals in government and changing strategies make it difficult for any system to thrive.
• Zeman also raises the issue of drug trials and while the NHS is supposedly a nationalised system, private drug companies axert huge power over it; ‘Denying it to our patients just because NeuroProtek are paying for the trial is arguably as dodgy as giving it to them for the same reason.’
• ‘On the unfairness of Geoff receiving better treatment because he knows Jack, Mary, jack’s wife says ‘That’s…that’s life,’ knowing it wasn’t the right phrase, not now, but knowing too that it was what she meant.’
Furthermore all the doctors in the piece seem to have accepted that they must allow a certain amount of things to wash over them – that they will not always be able to treat patients to the very highest standard, ‘If he hadn’t developed the ability to turn away from at least some of the impediments to being a good doctor that endlessly bang into his face, he’d be a wreck. More of a wreck. And he’d have given up long ago.’
And I think in Zeman’s piece – as someone who did work in it – she is constructively critical of the NHS but allows for a certain amount of acceptance and understanding that as a human system you have to allow for human imperfections in health care – the founder of the NHS Bevan foresaw this. ‘We shall never have all we need,’ he said. ‘Expectations will always exceed capacity. The service must always be changing, growing and improving – it must always appear inadequate.’
• One of the big similarities I saw between the two pieces was the way cancer was personified and villified by the language used to describe it –
‘It felt desolate, hopeless-a fight against a few bundles of rampant cells,’ Lia Mills describes her tumour as a crab ‘ sucking and squeezing.’
‘Stay where you are you little bugger. Don’t grow. Go to sleep.’
She also uses a lot of war imagery when talking about her cancer,
‘I’m like a raw recruit who gets wounded during training.’
‘Blood splatters on his surgical boots.’ ‘Hidden enemies…random encounters that could have catastrophic effects.’
• In both stories I also noted a sense of betrayal by the body and a lack of identification with what actually happens the body when you have cancer – in Lia Mills story she talks about cancer’s ‘genius for disguise’ and states that ‘there’s not much reason to be found in anything that’s happening at the minute,’ and even wonders at times if she really does have it while Geoff’s wife Chloe struggles to connect the realness of her husband with the fact that part of his body is effectively killing him;
‘What both calmed and threatened to break Chloe in blows that fell daily, repeatedly, was that Geoff was no less real now than he’d ever been. He was still so much there, to talk to, to plan with, to touch…his body warm, breathing quietly beside her.
• In both stories there is a strong sense of the divide between the health care professionals and patients and there seems to a big problem with communication in both. In Zeman’s story she really emphasizes how doctors are held by some people in such a high regard, it is as though they are of a class of their own – the taxi driver for example corrects himself, ‘Alright by me guv. Sorry, I mean doc.’ While she also highlights doctors’ inabilities to correctly estimate what and how much information their patients want – the taxi driver accuses the doctors he has dealt with of not giving he and his wife enough information or of talking to them like they were idiots and Geoff, as a doctor ‘reflects on the gulf between his and Maeve’s experiences. All the professional stuff had been so easy for him: he’d known pretty much what was going on, and then getting tests, diagnosis, treatments, all Maeve’s pitfalls had been plain sailing.
‘Staff trying to feel their way towards how much their patient knew or wanted to know, whether they wanted advice and guidance more than they wanted autonomy..’
NHS moving towards being a system that provides more choice – Geoff considers whether people would prefer ‘a sharp shock over the slow drip of despair as hope ebbs away.’
While in Mill’s story she finds she never quite has the time to ask the questions she wants to
‘I still forget to ask the crucial ones, or don’t think of the one revealing piece of information that I need until after they’ve gone.’
And indeed is surprised by how passive she feels about finding out what’s about to happen to her – trust in doctors – giving up autonomy?
• In both stories time and waiting are important themes. Lia Mills sees herself nearly as racing the tumour –
‘Every second that passes is an opportunity for the tumour to spread,’
‘ we stalk each other – the tumour and I, one eye on the clock,’
and talks about how quickly things change when you have cancer. While waiting is a bit theme in Zeman’s story – the taxi driver talks about all the waiting, waiting and waiting he’s done, while Geoff was been going through all the stages of diagnosis and treatment waiting for a good prognosis, waiting for the right moment to tell his children and then waiting to finally die.
• In both stories the way cancer affects the lives of family and friends and the different support networks people have is dealt with. Geoff misses out on the chance to have his own sister and husband to hold his hand during treatments and fight for him – embodying the cliche of the doctor as the hardest patient to treat, while Mills is constantly surprised by the kindness her cancer brings out in people while she still describes the process as lonely but also with a lack of privacy – exacerbated by the public ward she finds herself in. In Mills’ story there is a sense of a loss of autonomy in the treatment of her cancer – she is irrationally disturbed by the ‘institutional, public invocations.’