Earlier this year, I wrote, out of a mixture of bewilderment and frustration, about my experience as a novice in-patient at what is widely regarded as one of London’s premier teaching hospitals. I had been admitted with a badly broken ankle, and the result was three stays of just a few days each over the course of a month: the first (from A&E) for an operation that didn’t happen; the second, ten days later, for an operation that did happen, and the third two weeks later after the wound became infected.
As a reader, you might be tempted to dismiss the lot of us as an entitled elite who have been insulated from reality for too long
The central point of my piece was the nigh-total information vacuum that surrounded me and the impossibility of finding out pretty much anything about either my care or my condition. Even trying to persuade a nurse (or assistant) to divulge whether the regular blood pressure, oxygen and temperature tests were OK was like wringing blood from a stone.
It was hard to divine who, if anyone, was actually in charge either of the ward or of me – no doctor’s name featured on the board above my bed (or anyone else’s, in fact, including mine). I had to ask what drugs I was being given, and why – and twice they were wrong.
The information limbo extended to nurses and other ward staff, who rarely seemed to share information, with the wall between nurses and doctors particularly impenetrable. Instructions were routinely passed along only by computer, with attendant delays – including for admissions and discharges.
But enough of my (repeated) whingeing. It turns out that my experience was by no means unique. Complaints about poor, or non-existent, communication feature time and again in a cluster of recent accounts published by approximate contemporaries of mine in the journalistic world, who see it, as I do, as a major source of frustration, inefficiency, and, yes, mistakes.
Here is the BBC’s former technology correspondent, Rory Cellan-Jones, in an article headed, ‘My NHS hell waiting for surgery and information’. Cellan-Jones says that a particular source of anxiety, as he awaited his summons to an operation was ‘the difficulty of contacting anyone at the hospital. Without a name you are lost in switchboard hell, passed from one extension to another as you try to identify the correct department.’
That is, if the phone is ever answered. In my experience, as in that of Edward Lucas, formerly of the Economist, now a columnist for the Times and a Lib Dem parliamentary candidate, you can spend days on hold listening to muzak – then they cut you off promptly at 5 p.m. Lucas was writing about trying to improve life for his 92-year old Aunt Sarah in her last days. No shrinking violet in real life, Lucas admits to being ‘on the verge of helpless tears’ trying to navigate a system which included a 40-page form to apply for ‘end of life support’, and where ‘the hospital that had discharged her, the overworked GP practice, the rule-bound tribes of watchers, wipers and feeders – all failed to work together.’
He hands, as I would, a bouquet to the district nurses – but they are the neglected relics of an older system, and ‘accessing’ their service can be another nightmare. Elsewhere, as he notes, ‘kindness and common sense evaporated’ in the ‘maze of acronyms, buck-passing, jargon, jobsworthery and muddle’.
Cellan-Jones meanwhile was back in hospital and hoping for his operation. ‘I kept asking when a decision would be made… but got no answers. Hope began to fade, and then around 10.15 a doctor arrived and seemed surprised that I had ever expected to be heading to theatre…’ And then, ‘After 36 hours occupying a valuable bed to no purpose, I was released… to go home for the night – although the paperwork for my release took four hours.’ Then, ‘due to a mishap with passing on my contact details, it took all day Friday to hear about the next step.’
While he compliments the staff, what struck him, he said, ‘is that the NHS remains a cumbersome beast that struggles to talk to its patients or to itself… communication between medical staff within and between hospitals also appears hopelessly inadequate, with the gulf between doctors and nurses particularly acute’, and computers at times more a hindrance than a help.
An especially tragic case is that of Martha Mills, the 13-year-old daughter of Guardian journalist, Merope Mills, who died from undiagnosed sepsis, after suffering an injury to her pancreas in a cycling accident. Mills launched a successful campaign for patients and/or their carers to have the right to a second opinion. Interviewed by the BBC Today programme, in addition to appearances non many other outlets, Mills related the sequence of dismissive responses that preceded the death of her daughter and the regret she felt about not contesting the lack of medical concern more robustly. We must wait to see how keen doctors are to implement what is to be known as ‘Martha’s Rule’ – but I wouldn’t hold my breath.
So where do all these complaints – from the trivial (phone waits) to the catastrophic (the avoidable death of a child) – lead us? As a reader, you might be tempted to dismiss the lot of us as an entitled elite who have been insulated from reality for too long and are now hitting the age where we brush up against the medical world more often. What do you mean, you’ve never been in hospital before? Stop thinking you deserve better than the NHS can provide. It’s doing its best; if you think it’s so bad, go private.
And maybe we are just that, an entitled elite viewing the NHS from our own niche perspective – with the added problem that, because information and communication are our thing, we find it especially hard to get to grips with situations where those basics are missing. But please note also how much our accounts have in common – across different NHS hospitals and services — and note, too that, as journalists, we are used to asking questions and are mostly not in awe of experts.
So why was it so difficult even for me to get answers to such basic questions as: what is my injury precisely; when is my operation happening; what are these pills you are giving me’ what did my blood tests show; and, please, when can I go home? Isn’t this what most patients and their families want, and need, to know? The point is that if even we – professional questioners who were conscious and aware during most of our stays – found ourselves in this information black hole, how bad is it for those who do not have a public platform to vent their frustrations?
To which someone in the NHS will doubtless respond that any remedy would require more people and more money. Oh no it wouldn’t. It would cost nothing at all for the many different bits of the NHS to start talking to each other – but especially to those in its care. Cellan-Jones says he emerged from hospital ‘convinced that more money and more staff won’t solve its problems without some fundamental changes in the way it communicates’. So say all of us.
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