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>
I am afraid the big factor has been the 2012 Health and Social Care Act for which Andrew Lansley got into bed with various US consultants to come up with the blueprint for turning the NHS into a number of Accountable Care Organisations, now called Integrated Care Boards (or ‘partnerships’).
The result has been increased rationing, increased waiting lists, centralisation of acute services from accessible community/district hospitals to huge city hospitals.
The resulting stress and pressure has caused many to leave the NHS and left others teetering on the edge as they try to cope with 12 hour shifts and are blamed for the NHS being not fit for the future.
This has been a Neoliberal disaster as these selfish politicians preside over a ln NHS that in 2010 was accepted as the most cost effective health service in the world.
But the population has been groomed into blaming the NHS for its new inefficiency. Its budgets have been starved in real terms by around 1.5% per year, cumulatively.
The recent maternity investigation by Baroness Amos is a good example of how horrific the cost is to those who pay their dues and deserve the decent NHS we had, which the vested interests are determined to dismantle, and doing so with the encouragement of those who have not understood what the master plan is.
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
Having recently been subject to pain on three occasions that was compared to a kidney stone – the most excruciating pain I have ever experienced (and I have been through my share!) – I have the deepest sympathy not only for the pain but also for the absolute dread of its return. In my case it was due to heart failure, although having no prior knowledge of the symptoms which include swollen ankles and this back pain (in women but not men) I did not realise how serious it was. After several emergency admittances I was advised that I needed an urgent ablation for my atrial fibrillation which I have had for many years without any problems but the waiting list was at least 12 months! Unable to face the wait I rang the consultant’s secretary to ask when I was likely to be seen for my urgent procedure. She said she would look at the list. A few days later the hospital rang me and I was offered an appointment in a four month’s time. Then the consultant’s secretary rang me a week later and asked if I could attend a pre-op appointment a fortnight hence with admission a fortnight after that! I realised that by making personal contact I had broken through “the system” and was appalled that others who passively wait on the one hand, or get angry on the other, end up with much worse experience. My partner diagnosed the NHS system of patients as impersonal data processing years ago and being the sort of person who rightly gets very angry, he has had the much worse experience.
I wish you well and will follow your analysis and discussion of possible solutions.
Thank you.
That is a really interesting connection to make. People in the NHS very obviously do care, but it becomes much easier to care when they realise they are dealing with a person, not a statistic or data entry.
And good luck!
You have my sympathy and I hope you get treatment soon.
Our experience in Australia has been mixed, but very similar. In a real emergency, a burst appendix in a remote part of WA, everything worked perfectly for my wife including a nighttime ride with the Royal Flying Doctor to Perth and surgery within a few hours. All free at the point of delivery.
However, after a phone call in October 2022 from her pain specialist warning that her latest MRI scan showed a real risk of permanent paralysis from the spinal degradation she had been suffering for several years. He classed her as an URGENT case. At that time the waiting time for a first neurosurgery appointment in Tasmania for an urgent case was 863 days, the longest of any waiting list in Australia!
We don’t have private insurance but fortunately were able to wave my retirement savings money around and found a surgeon willing to see her in 3 weeks (ironically not the one working for the same firm as the pain specialist who flatly refused to see an uninsured patient) and she had fusion surgery within 3 months. Not quite free at the point of delivery but $50,000 well spent based on the outcome.
We decided to stay on the waiting list because this was not going to be the end of her problems and she has finally received a Medicare (Aussie NHS) appointment for the end of August, after waiting 3 years and 10 months.
Jacqueline had a year as a flying doctor before I met her.
This is yet another salutary tale that should warn people in the UK to stop accepting the ‘there is no money’ excuse for the run down of the NHS.
It didn’t get its reputation for being the best health service in the world for nothing!
My lesson learned in dealing with the NHS over the past five or six years is that it pays to be proactive in a way that we never had to in the past.
If you are referred to a consultant by your GP or physiotherapist, phone the consultant within days to check that you are in fact on their waiting list (not on the wrong list, or not listed at all). If you have a hospital outpatient appointment, phone the day before to be sure it hasn’t been postponed and the letter in the post (which will arrive two days after your abortive 20 mile round trip.)
We are not used to “bothering” the doctors and hospitals and other experts. We have been trained to be obedient passive patients, and that doctor knows best. But now we are customers and consumers, and the NHS is broken into profit centres, so it seems we have to change our attitudes and take more control over the service we are being sold.
It pays to know the system and be the squeaky wheel that gets the grease. The downside of neoliberal capitalism.
There is academic research that shows that this approach works.
Richard.
You have described so well my picture of the health system (not service). I have multiple chronic conditions but they are siloed with the result that I seem to have disappeared and become simply a receptacle of multiple medications.
I echo Hannah’s experience of getting somewhere if you contact a consultant’s secretary.
Thank you and good luck.
I am afraid this reduced say in things is not limited to the NHS. Here in Scotland it is no longer possible to get into any police station to report a crime or make contact fro any other reason. If you do eventually get somebody to come to the door they will insist that you ring the non-emergency police number. This apparently is rarely answered. Personally speaking, I hung on for ten minutes and then gave up. My former police inspector stepson suggested to me that this falsely reduces the reported national crimes statistics. Well, well well!
That sounds highly likely to me. Our local police station appears to have locked doors most of the time.
I agree with Steve Trevethan that NHS Scotland is pretty good. I moved here more than 30 years ago and have in the last 20 years developed a blood condition which sometimes renders me very anaemic. Over the years I have been admitted to hospital several times, including twice last winter, usually for a week or more. The treatment I have received has been excellent and the care friendly and personal. Having a chronic condition means I have regular check-ups, always with the same consultant and have had time to ask many questions, which are carefully answered, though Haematology is such a complex subject that my understanding of it is still quite shallow.
Appointments with my GP practice are usually available in a couple of days, sometimes the same day, though I miss the days when I always saw the same doctor and had a personal relationship – these days I have to explain myself to a new person each time.
However, the staff at Nine Wells Dundee are very helpful and I have found that phoning Ward 34 when I suspect my Haemaglobin is low will, bypass the GP system and result in a call to come in immediately and give a blood sample. I have learnt to take an overnight bag, as I am then likely to be given a bed, after waiting for the results of the test.
I can only speak of my own experience and patients with other conditions may have less glowing reports of NHS Scotland.
It’s not the people, it’s the system.
I don’t know if you’ve already come across this organisation: https://beyondcommandandcontrol.com/ but for me, their concept of ‘failure demand’ explained an awful lot about my other half’s experience over the last year.
In a nutshell: the failure to address the initial need immediately (because ‘there is no money’ to invest in surgeons or theatres), results in 12 months of unnecessary A&E visits, planned clinic visits, medical supplies etc. etc. Which together probably cost more than solving the well-understood problem with routine treatment. Not to mention the unnecessary stress placed on patients and staff as a result.
But if the system did that, where would all the opportunities for extraction come from?
This is the real source of ‘waste’ in public services. Private provision of ‘failure demand’.
Much to agree with
You can see why the US system of medical care is the most expensive in the world. Their system (which is being adopted here under the guise of ‘improvements’ through the Health and Social Care Act 2012) is focused on doing anything but treat the problem easily and quickly – unless you are well privately insured.
That is what they are running the NHS down for. Already many people have been dipping into their retirement savings to have hip replacements done privately to avoid lengthy queues and worsening mobility.
The same is happening with cataracts and many other problems. Though with cataracts, the Integrated Care Boards are under instruction to pay for as many private procedures as are ‘chosen’. This is leaving the highly-regarded Oxford Eye Hospital – the only specialist hospital with the only eye A&E for miles around – without enough funding (money goes with the ‘choice’ of provider) and without operating practice for students.
You can see what’s going to happen!! And it’s all planned with the help of ‘consultants’.
This is an interesting (long) read on how it was all cooked up. https://www.opendemocracy.net/en/former-health-secretary-andrew-lansley-s-diaries-finally-released-in-nearly-full/
So sorry about your kidney stone – and the curious NHS definition of the word “urgent”. It’s difficult to cope with the uncertainty, isn’t it? I do sympathise. My first cervical spinal op was described as “urgent”. I waited 9 months and got very irritable with the consultant’s secretary. Rinse and repeat for both hips, one knee, and both shoulders. Tbf, I did get emergency surgery for 2 more cervical spinal ops and 2 lumbar spinal ops.
I now take the initiative. I talk to the consultant as though I was meeting him at a supper party. As an equal, not as a God. For cock ups at my ex-GP’s surgery, I started low, but was forced to go nuclear. In the end, I jumped straight to the nuclear option, as I was so pissed off with them.
The surgery itself has had mixed results. One hip dislocated 7 times, and I’ve just had a much bigger op to revise the thing. Wrote to the surgeon beforehand explaining that it wasn’t just my hip he was “treating” – everything he did to the hip impacted the rest of my frame. Asked for proper rehab to give me the best chance of surviving my remaining joint replacement (left knee) and told him that otherwise I’d just end up as a permanent drain on the NHS. Seemed to work – rehab bed nearer home. Good results so far.
As long as the NHS is forced to meet “targets”, meeting the targets will become the aim, rather than patient care.
Further to my comment. Chasing all my various appointments and meeting brick walls or circular arguments is bloody exhausting. And bloody time consuming. And tear-jerkingly frustrating.
I do not think that should be my responsibility. So called “choice” assumes you can sit on your comfy sofa and look at hospital reviews to decide which you’d prefer. It’s bollox. Firstly, you’re ill. You don’t want the hassle – you just want to be told where to go when. I’m not a customer, I’m a sick patient. Secondly, you end up running around in YOUR time, using YOUR phone bill, to leave messages that aren’t answered – assuming there’s a bloody answerphone. Thirdly, it is incredibly stressful to take on the responsibility and pressure of being your own care coordinator. What happens if you miss something? Is that YOUR failure? Or a letter arrives too late and you go back to the bottom of the waiting list? Or – worst of all – you become terminally ill because YOU didn’t spot something? It’s appalling stress to add to the stresses of being unwell. Or in severe pain.
Hobson’s choice.
Choice is neoliberal bullshit.
“Further to my comment. Chasing all my various appointments and meeting brick walls or circular arguments is bloody exhausting. And bloody time-consuming. And tear-jerkingly frustrating.”
Much to agree with.
Hannah – have you been spying on our family? You describe our experience as unpaid “care-co-ordinators” so accurately.
In addition to the advice about consultants’ secretaries, I would add, the patient needs to anticipate the need for tests, scans, X-rays, blood, urine and other tests, BEFORE you see the consultant, then get those done, then at the appointment, tell the consultant to look for the results on the “system” so that your precious appointment time with them, can result in an informed discussion, rather than merely the promise of tests and a confusing one-way follow-up letter. (Years of bitter experience…)
Without Jacqueline, I would have no idea what was going on in some of my recent interactions.
The moral is to take someone with you.
It helps if they will ask questions until reasonable answers are given when you are feeling less than 100%.