Lost in the System

I have been looking at the King’s Fund report Lost in the System. It is distressingly familiar, both for people attempting to use the NHS, and those attempting to provide a service through it.

In Being With and Saying Goodbye I describe two kinds of treatment, each of which require attention and diligence in clinical services: 1) Treatment on the lines which is the prescribed treatment, developed by and taught to clinicians, and 2) Treatment between the lines which is how we address our patients in writing, when we talk to them, and how appointment systems, waiting lists, and referral between departments, for example, work. Each is important.

Increasingly, the scandal is not about treatment on the lines. Prescribed treatments may be available or not, and there may be wrangling and disappointment. Very occasionally there is a genuine clinical error or malfeasance. But, more and more, the complaints and dissatisfaction are about the treatment between the lines.

They are, of course linked. They are linked by funding, but also avoidance. The government, the NHS, and public have failed, chronically, to manage the inevitable crisis around the massive advancement of what it is possible for medical treatment to provide, and what our taxes can afford for us to provide to ourselves, freely and fairly at the point of delivery. In an attempt to avoid this thorny dilemma, attention is wrongly focussed on the patient-facing aspects of service delivery, whilst funding and optimism are directed towards institutional structures and procedures.

There is a fantasy that everything can be provided more cheaply a) by better management (money diverted towards burgeoning bureaucracy, management consultants, and such-like) and b) technology. This latter is particularly frustrating because we all know in our hearts that what we all want is to be cared for by our fellow humans.

I could probably get my head around dying earlier than I might if some flash treatment were provided but, when I do die, as die I shall, I don’t want to be in pain, indignity, solitude, or surrounded by family and friends who feel disempowered and neglected.

And when I wait too long for an investigation or treatment, I don’t want this time to be spent being lied to, lost, or smugly informed by so-called software. I want it to be explained to me honestly by a human who knows the score and can genuinely empathise and commiserate. I want companionship in my discomfort. The most expensive auditing firms, and the most slickly developed apps, cannot provide this.

It is all known. We all know this. I wrote about it ten years ago, but of course I wasn’t the first. We have all seen it coming, and too many heads are in the sand. Isabel Menzies Lyth told us about it in the ’50s. She pointed out how institutions, which cannot hold hands, commiserate, or empathise, but which try to suggest that they do, are nevertheless terrified, and increasingly pull back from these emotionally taxing aspects of caring, putting impersonal mechanisms in place to supposedly fill the gap.

We are up for it – this emotional work. I speak for clinicians because I was one, but also for all the other humans who greet you, speak to you, handle your data with respect, and buckle down to work to provide you with what you most of all need. Not remote, head-in-the-clouds, fantasy-land stuff.

But here is the most tragic part of it. We have been working so long under the shadow of the lie, and with inadequate resources, that we are demoralised. The clinicians can only do what they can do, and one thing they need is adequate administrative support – not just the paperwork – the people. The admin and support staff are in the same situation. To be in a position where you want to do what is required of you, and you could do but for the inflated expectations and depleted resources, is moral injury. To be doing your best and then have to field anger and complaints that you know are justified, is grossly demoralising. Think about the word: De-moral-ise. We are having our morals, and well as our morale, undermined, polluted, and stripped away. We become less able to muster the internal – never mind the external – resources to do the job.

Read the King’s Fund report and then re-read this. Let’s pull ourselves together. In this country we are still all in it together; the clinicians and politicians are also patients, or future patients, of the NHS. Let’s expose the lie, face the dilemma, and make it better.

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