A long time ago, I spent a part of my gap year working as a medical records clerk at Barts hospital in the City of London. In those days, medical records were stored in folders – slim, if you were lucky, bulging if you were not.
Our job, as medical records clerks, was to assemble all the patients’ notes for outpatient clinic lists. This was harder than it sounds: rarely did a clinic gets its full complement of files.
Long unused records had to be called up from storage in Kent (I still cannot hear the word ‘Swanley’ without a little frisson of alarm) but the real problem was with the bulging folders, the ones belonging to patients who had complex needs, who were in and out of the hospital on a weekly basis. These files often didn’t make it back to us in time and had to be tracked down on the wards, or with medical secretaries at other, competing clinics. And then we had to go and wrest them from their grasp.
A few decades on, my gap year job has gone the way of the spinning jenny. From today’s digitally-enhanced vantage point, it’s strange to think that the availability of medical records to world-renowned clinicians so recently relied on the persistence – and the sensible shoes – of a handful of school leavers scurrying from a grubby basement across courtyards and up and down stairs.
Much later, when I came to edit Gransnet, the social networking site for older people, I discovered that many of its users, who were often caring fro elderly parents, were struggling to negotiate a hospital and care system where the notes, actual or virtual, weren’t available. Stories had to be told over and over, bits of them got lost, and care was every bit as disjointed as it would have been if one of my Barts doctors had had no access to the notes of what his colleagues had prescribed the previous week.
Of course, integrated care is about much more than the sharing of information: it’s about structures designed for collaboration and different ways of thinking about patients’ health needs. But information is at the heart of it: none of the rest works if knowledge is not shared. Yet, despite the opportunities for clarity of communication that are presented by digital technology, health and care systems too often continue to be fragmented, disjointed, and clueless about what is going on in other parts of the machine.
In the commercial sphere algorithms monitor our preference on a minute-by-minute basis. Yet health and care workers have no such resources: they often have scant understanding of patients’ likes and dislikes; and, where they do, they have precious little opportunity to share their insights. The system often seems uninterested in the bigger picture – despite the fact that, as 2014 Reith lecturer Atul Gawande has argued, if patients understand the full implications for their particular daily lives of any particular treatments, they often make very different decisions.
Back when I was a medical records clerk, I sometimes wondered how patients fared after they walked out of the front doors, how they communicated some of what was in those fat files to their carers and families. It must have been hopeless. But for many current patients, it’s still not much better. Even as hospitals endeavour to become less fortress-like, to embrace social care and mental health services and even some of the vast hinterland of wellness therapies, there remain all kinds of blockages to the sharing of information. Primary, secondary and tertiary care often struggle to join up, let alone to connect satisfactorily with care from family members or the myriad other services that impact directly on patients’ health.
The reason the revolution has come so slowly, of course, is that patients’ needs, especially as they age, are complex. Why would an overstretched NHS have any desire to contend with an elderly man’s housing problems, even if the damp and the noise and the presence of his stepson might be damaging his mental health and aggravating his angina; even if sorting out his housing might ultimately save significant amounts of money in hospital admissions?
I learned one thing from my brief sting as a medical records clerk: if the patients’ notes weren’t there, the clinic appointment was next to useless. And it remains true: if you don’t have the fullest possible picture of what you’re dealing with – or of what, beyond drugs and operations, might help an individual patient with a particular sense of what makes life worth living – it’s very difficult to deliver the best care.
By Geraldine Bedell