My recent hopes that my kidney stone had gone away have turned out to be misplaced. My latest tests show that I do, in fact, still have a stone, and it is in a position where action will, in some way or other, be required. What I do not know is what will happen as yet, even though the NHS assures me that I am on the waiting list for an urgent appointment to decide what should be done, after which I will be put on an urgent waiting list for urgent action.
The thing about all this, which I am sure that others know all too well, but which I am now experiencing on a personal basis for the first time, rather than as an observer, is that urgent does, in the case of the NHS, have a very different meaning to that which it has in any other context. It implies a need for speed and conveys a sense of stress, neither of which is reflected in the actions taken.
What I am also discovering is that the NHS is excellent at sending information without explanation, whilst providing no opportunity to ask the most basic questions to secure understanding. It is a good job that I am married to a retired GP, or some of the gobbledegook that I have been sent of late would have required a GP visit to secure interpretation.
I suppose it could be said that I should have known all this, and in principle I did, not least precisely because I have had relatives who have had intimate relationships with the NHS where I have provided support. The difference on this occasion is that I am the subject of the supposed care, which is apparently urgently required, for which no timescale is being provided, whilst the risk that I might return to a situation where I suffer intense pain and require urgent attention, as I did in late June, is actually stated to be a real possibility.
The consequence of that is that I feel utterly depersonalised by what is happening. I am no longer a person, but have become an object, subject to a process. In that transition, I have lost my autonomy and had my agency removed.
The experience that I had over a month ago was, to put it nicely, exceedingly painful, and I have been left with the open-ended possibility that it might recur, with the risk that damage to a kidney might arise as a consequence, which feels less than desirable. That now creates an aura of uncertainty around my plans and expectations, with the possibility that I might have to become an emergency admission again, and all for the sake, at this moment, of a telephone call described as urgently required but apparently not possible.
It would be all too possible in this circumstance to blame the NHS and state care, but I am not persuaded that that is appropriate. I think the depersonalisation of what is described as care, but which should properly be described as process, is deliberate and is a consequence of the medical-industrial complex.
Within that complex, the creation of which was a deliberate choice that originated in the USA with the Flexner Report, written at the behest of the Rockefeller Foundation before the First World War, the person is deliberately removed from their autonomy within the medical process and becomes a cog in the medical machine, whose existence is intended to create people fit to work within the capitalist industrial complex, but not to consider their wellbeing during their engagement in this process, whether during their illness or afterwards.
The approach the Flexner Report prescribed, which did require the removal of agency from patients within the system, who ceased to be considered autonomous individuals with human needs, and instead became inputs into a production process requiring that remedies be applied, is the foundation of modern medicine, and, in turn, of the treatment that I am receiving from the NHS at present. I am not blaming any individual, and I am certainly not holding any of them responsible. The failing is systemic, but it appears almost complete. It is not that the NHS, or those within it, are failing; the failure lies in the medical system and in how it is organised, irrespective of whether profit is a factor.
The problem is that medicine is taught as if doctors, and everyone else in the medical hierarchy, treat symptoms and not people, and the consequence is that the whole person is ignored, and siloed specialities are emphasised. In my case, that means the only apparent issue of concern is the state of my passageways between my kidney and the outside world, and the risk of blockage within them, rather than whether I might have any relationship to the issue involved.
The consequence is that I do now appear as a statistic, or at least on one urgent waiting list, and maybe more than that, when a simple conversation could resolve a great many issues, because I could, for example, decide that it was in my best interest to take no action at present and wait and see what happens. I could take that decision, and accept the risk that pain might provide the indicator that this turned out to be an inappropriate course of action, but in the meantime I will be on the waiting list. Granting me the right to make that decision would also restore my autonomy. But that possibility is not reflected in any of the correspondence I have received, or in the discussions I have had. Everything is about what might be done to me, but not what I might want.
As I have noted, the result is that I feel my autonomy has been removed. Thomas, in the meantime, felt exactly the same when being treated for the broken metatarsals in his foot, which have now thankfully healed. His foot was treated as an object that existed almost independently of him, and discussion on treatment became about something that felt like a third party, independent of both the doctors and him, which was then the subject of the medical process undertaken. None of that felt any more logical, or reassuring, than the process I am engaged in.
My point, then, is a very simple one. If we create a world in which people are denied their autonomy, and so their right to be engaged in processes that impact them, what outcomes do we really expect?
Move this one stage away from medicine, and look at why so many young people are disengaged with the economy. Is that any surprise when they are discussed by politicians, and so many involved in the education and early employment processes, as if they are units of production, and not real people with aspirations, desires, fears and sentiments all of their very own? I am sure that they feel as alienated and subjugated to a process of which they have little control as I do with regard to my kidney stone. Is it any surprise, then, that their treatment might increase the problems of finding them employment, rather than aiding them?
If we are to have a politics of care, that word needs to have meaning. Above all else, it means we have to respect the individual, whoever they are, wherever they are, and however they view themselves. And to achieve that, we have to level the playing field when it comes to power.
My loss of autonomy enhances the power of those in the medical system. That is inevitable. I am now subject to their control, and I think that is exactly what the system was designed to achieve, and succeeded in doing. The idea that there might be cooperation and even co-creation in the healing process seems alien in this system, and yet it should not be. That we have something very wrong is apparent as a result. There is much to rethink here.
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One obvious comment about a lot of this is that it doesnt seem to make any reference to the patients other responsibilities or their employment.
That means both the need to get them back to ‘work’ in its broadest sense and hw and when treatment fits in with the patients broader responsibilities.
Having moved to Scotland with some chronic medical questions/problems, the significantly greater personal communication and warmth when being in contact with medical and administrative staff there is most noticable.
Whilst agreeing that there appears to be/is a submerged government/elite policy of “mechanising” relationships with regular citizens and their children, might regional attitudes also be relevant?
Might such “mechanising” relationships in medicine also be present in education and law creation and application?
Might the consequences/purposes include?
1) Lessening the confidence of the regular person so that they are more passive and less questioning
2) Lessening status ditto
3) Administrative convenience/comfort
4) The enjoyment of real or imagined power by some administrators
Health professionals are trapped in silos, which function in order to demonstrate progress towards, or achievement of a “target”, set by a politician, who has been advised by a SPAD, who is under the influence of a lobbyist, who has been paid by a donor.
Unfortunately, none of those targets involve your flourishing or wellbeing.
Any health professional pursuing your wellbeing or, by the daily miracle of life in the NHS, actually achieving it, does so against enormous odds.
There are still a lot of these amazing people, our GP is one, but we are deliberately eliminating them as quickly as we can.
Lesson learned after much personal and family involvement with the NHS, a veterinary career and a brother who was a surgeon.
I hoe you sense the collective groan of sympathy and concern from all of us.
I have to say that this mirrors my own recent experience with the NHS. It was like a human production line, the end result of which I got a digital letter telling me that a prescription would be sent by post (so far not received). From then on it would be administered by the local surgery with my having a further appointment three months later.
No chance for me to ask any questions — I have many. No contact number to directly discuss the digital letter contents (all the numbers provided were the emergency/hospital/dept numbers). The system treats you as a unit, a number, it is all so impersonal. Efficient, but impersonal.
And to be clear, I do not blame the NHS. I blame those responsible for creating this situation. The politicians and a political system that doesn’t care.
Very sorry to hear about your stone and the whole miserable situation. I must look at that old report…
I’m sorry to hear that the stone is still there and that you’re kind of left in limbo over what happens next with the resulting feeling of depersonalisation.
My experience recently was very different. It was a Saturday when I went over on my ankle and heard a cracking sound. I was in great pain, could only hobble but could drive without difficulty. So I drove myself to the Minor Injuries Clinic at my local hospital. There I was treated with kindness, x-rayed quickly, reassured that they were unable to see anything serious but that the x-ray would be sent to a more specialised department where it would be more closely examined after the weekend and they would get back to me with their findings. I was duly phoned on the Monday morning with the news that there was indeed a cracked metatarsal and that I would need to return to Minor Injuries and collect a boot. Which is what I did. Throughout, I was treated as a person and not as an impersonal casualty. I was reassured that I could return at any time if the injury did not seem to be getting better. My foot has now healed completely. For all that care and attention I am very grateful.
i wish everyone could receive that same level of care.
Accepted. And my initial care was good. So was Thomas’s. It is what happened since that is the issue.
Going through the exact same thing with my husband.
The quality of care from individual practitioners he is receiving is excellent. However, the “system” is so discombobulated that one feels like a bus stop where different medical practitioners get off the bus to look at your “whatever”, make notes in your medical chart, get on the bus to travel to next patient then while they are on the bus they email you the notes they placed on your medical chart.
I agree with that and I have felt the similar issues with the ongoing NHS treatment of a condition I have.
I think what we see/experience sometimes is a result of monitoring and reporting systems in the NHS.
These concentrate not on elements of end to end flow, but on securing crude data at key points – treatment – rather than the whole journey – including follow up. As these may well be the most expensive parts of the service as well, the bias is on recording cost, budget spends, not patient experience or satisfaction.
One of my family had to seek treatment in early July. The condition means she is unable to see well, thought she can still read. They sent some tests away and offered an appointment in the second half of September. This week we had phone call. A cancellation meant she could be seen the following day.
The day after seeing the consultant we had three letters in three envelopes. One cancelling the Sept. appointment. One offering the one we went to. Another describing the consultants findings. I can appreciate the last could be different. But family members also report similar things.
The NHS staff we saw were all very helpful, caring and competent. It just seems so inefficient
Hope you get treated soon, Richard.
Thanks.
I can handle the inefficiency. It’s the systemic failings that are annoying.
I literally feel your pain and frustration, Richard. As you know I suffered from two episodes of sciatica – one on the right then one, considerably worse, on the left. This left me with severe mobility problems and, after been seen phoned and texted by 4 different GPs I was referred for physiotherapy, for which I was advised there would be a 26 week wait!!! So I went privately with a 3 day wait, and physio advised an MRI scan because he suspected a compressed spinal disc. Unwilling to bear the cost of it (actually not that expensive) I tried the GP again armed with the physio’s report and amazingly I got an appointment with a musculoskeletal (MSK) specialist next week. That will be at a private hospital, but funded by the NHS. It remains to be seen, but I probably should just come to terms with being old and decrepit.
Brendan Cox, husband of the murdered MP Jo Cox has an article in The Guardian newspaper today pointing to a “national conversation” which people can participate in online to discuss what kind of country / future we should “build together”. A place to get comments made about busting the economy as a household analogy and also the politics of care?
Really hope you can get treated soon Richard. So frustrating for you. I think regular and polite badgering the system would help – to remind the secretaries/nurses/doctors you are ‘urgent’. I think they sometimes do slip people in – after cancellations etc<p>
The customer/contractor model has been insidiously introduced into the NHS over many years. It seems part of Thatcher’s legacy – trying to bring quasi ‘markets’ into public services.<p>
Some years ago, we did suggests replacing the ‘serial diagnosis’ model ,where patients spent a year or more seeing specialists one after another with waits of several months for each, resulting in late cancer diagnosis which was often fatal.<p>
A patient-centred regional hub with multiple specialists could sort out the diagnosis over a couple of days. This would save money and save lives. I think there are experimental moves in this direction<p>
NHS was top of the OECD healthcare satisfaction table in 2010 – it has plummeted since – largely because lack of investment in technology , skills and people.<p>
I really do hope you get treated soon Richard. A little light badgering may give you some sense of agency and control – despite the system. Good luck.<p>
Richard, having suffered from a kidney stone myself, I hope my experience will help you deal with it. I developed a severe pain in my left side and managed to get an urgent appointmant with my GP. A urine test showed the presence of blood and I was referred to a pre-op ward at Exeter RD&E that evening. I was given codeine-based painkillers and connected to a drip to flush my kidneys. I needed to urinate into a container for analysis almost every 20 minutes for a whole day.
A scan still showed the presence of a stone but it was now painless and I was sent home and it passed naturally and painlessly the next day.
The surgeon advised me to keep drinking plenty of fluids and avoid foods rich in Oxalates. I was given a pack of Codeine-based painkillers but it has never been needed. The NHS service here was excellent, also in dealing with basal cell carcinoma.
My problem is that it has not moved much in 6 weeks and could still threaten my kidney
I’ll have to see what happens.
Sorry to hear about the obstinate stone, Richard. Let’s hope it can be resolved quickly and without too much pain or inconvenience.
On your general point: a few months ago my mum was whisked into A&E after a fall. She has Alzheimer’s and memory loss and was frightened and confused. Nurses kept coming and going, doing this and that test. Individually they were all excellent, but they were all entirely task focused. There seemed to be nobody who “owned” the case to whom I could turn to ask for advice, guidance, a summary. It was eerily like being in a gentle but unthinking machine.
On a quite different matter, I have recently been trying to resolve a problem with my own tax and NI contributions. It is impossible to find anyone to have a proper conversation with. I have managed to speak to someone on the phone but they couldn’t answer any of my questions. They just took down details and promised to get back to me. And then nothing. Nearly all government agencies appear to be like this.
We are all being held at arms length. Our our real-world human experience is systematically ignored, and responses are limited to collection of tick boxes.
Arm’s length is the key phrase