'Patients must indeed be patient. The term 'patient-led' invites disbelief that patients are going to lead the NHS'
Having cancer again is making me increasingly mindful of gulfs between reality and rhetoric in our healthcare system. Thankfully, there are not too many. But one area where there's much more talk than walk is the patient choice and responsibility arena.
I'm all for patient choice and responsibility. It would make doctors' lives easier for one thing. But from an individual patient perspective, the words are meaningless.
In today's NHS, it is difficult to identify any stage of a patient's journey where they can meaningfully exercise personal choice or responsibility.
People sit in outpatient clinics and hospital beds looking alternatively bewildered and bored, clutching admission letters and hoping someone might tell them the basic facts of their treatment or procedure: why exactly they are in hospital in the first place; what that means in the longer term; how long they might be in here for; what to expect when they eventually go home; and who to contact if things go wrong.
And because it's difficult to get answers for these kinds of questions, people rarely ask other questions that they probably should, such as what their treatment options are and how each compares in terms of benefits, harms and hassle.
The dearth of intelligible information is probably why people end up venting their frustration on radio stations, demanding things that cannot be provided and rarely articulating the larger issues at stake.
A recent example from Radio 4 on mandatory single-sex wards - as if it's not difficult enough managing high-dependency beds without further constraints. Or 'modest' NHS robes that untie at the back - which is entirely necessary so tests can be performed.
Had no one told the interviewee you can wear your own clothes once the tests are done? Probably not, come to think of it. The larger issue underpinning both demands is patient dignity, which is a real issue and needs concerted management strategy to address.
Learning to teach
It's not surprising that people don't get all the information they need from health professionals. Doctors and nurses rarely have the time to explain things properly. Few doctors are naturally good at explaining and, sadly, we're not trained to teach.
And even when doctors and nurses explain things carefully, people don't take much of it in because they're too busy putting their shirt back on and worrying about whether the parking meter is running out.
What is even more surprising is that, as yet, there are no professional information systems in place to support people in making such meaningful choices and taking responsibility for managing at least some aspects of their condition at home.
Patient leaflets are rarely up to the task. I've never actually seen anyone reading one. Patient websites are seldom designed to meet the average levels of functional literacy. And virtually none are able to provide practical information.
It is not sufficient to transliterate medical and policy websites, akin to writing computer instructions directly from technicians' manuals. Nor does it help to pepper unscientific information with the odd citation, as if that makes it trustworthy. That's what you do in school essays before you know any better.
Of the millions of pieces of published medical research, only a tiny fraction are reliable enough to base decisions on. Any medical claim, however bogus, can be cited by a study of some kind to make it appear scientific.
Producing high-quality consumer information in any industry requires specialised skills and, just as importantly, continuous updating to ensure it stays relevant, reliable and usable.
But maybe the current state of affairs is not really surprising. The policy of a 'patient-led' NHS denotes a lack of seriousness.
The term 'patient' (rather than, for example, 'customer' or 'consumer') keeps people passive.
Patients must indeed be patient. Similarly, the term 'patient-led' invites disbelief, since no one seriously imagines that patients (or even consumers) are going to actually lead the NHS. Just as no one would suggest that consumers should lead the banking system. Consumer-informed, definitely. Consumer-led? I don't think so.
Previously, I might have argued that this kind of policy is good strategy, since the NHS has enough to worry about without having to take its consumer views into account as well.
But that would be to deny the real problem: without consumer input it is virtually impossible - in any industry - to improve the quality of service.
Consumers are the only ones who can supply 'hard' information about service quality because they are the only ones who experience it.
Obtaining valid feedback for service improvement is a professional and costly activity which virtually all industry sectors have been investing in for many years now. I'm talking about professional customer research that is serious about improving the quality of care, not a morning tea session.
Things are not all bad. Some hospitals recognise patients as consumers and are investing in professional quality improvement. I am delighted to include my own hospital in this. But many still have a long way to go.
That it is still novel to interview NHS consumers about customer service 'in their own voice' is an indication of the poor state we're in.
I very much doubt British Airways or Tesco would be so cavalier in their approach.
Dr Anna Donald is co-founder of healthcare information provider Bazian.