While this article is a reflection of recent experiences of the NHS, it is far from being a rose-tinted, Pollyanna type rant about how much better things were in the good old days…
For instance, in the 60s (at least in Whiston hospital) is was routine and accepted(!) that nurses could and would go round after visiting times and scoop up all the toys and sweets people had brought for their children. The toys invariably went into a shared toy room (or disappeared in their bags for their own children), while the chocolate and sweets were taken to the staffroom to be divided up between said nurses. Stealing from the mouths of babes comes to mind. They also botched the operation, but nothing was ever said, there was no PALS, and the idea of running to phone for the nearest medical negligence lawyer would have been unthinkable.
Fast forward to the 80’s and instead of a straight-forward rhinoplasty (resetting a broken nose) the Indian(?) surgeon took it upon himself to practice his plastic surgery skills and completely reshaped my nose – and not in a good way. Were that done today the surgeon would be struck off and the hospital (Whiston, again) most definitely have been looking at a 6 to 7 figure lawsuit for assault, failure of duty to care, and medical negligence. That (type of) incidence was presumably commonplace and is why hospitals and surgeons now go to great lengths to explain and get consent for (elective) operations – what it involves, the risks, do you understand, etc.
Jump ahead to the 00’s and, well, the fact that I got a long apology from the chief executive shows things remain far from perfect. The apology pretty much screamed "Failure of duty to care? Mea culpa! Please don’t sue us!" Not that I would, I just want them to get their bloody act together, though if it were possible to sue for the unauthorised plastic surgery some 30 years on I wouldn’t hesitate!
All that said, they kept everything in-house and the NHS was one of the best hospital systems in the world. The porters, cleaners, ancillary workers were employed by the hospital, they had their own laundry, food was prepared fresh and served from heated trollies and by, and large, nurses cared*. Wards had communal rooms, often with a TV, cards, a selection of games and jigsaws.
And now, in the present, it’s all hived off to the private sector! Like the stolen sweets from the 60’s, the NHS is being carved up and divided between the buddies of various MPs, peers and Lords. You can’t even point the finger at any-one party because, following the examples of Blair’s naked greed, they are all feeding at the trough – Tory, Labour, Lib-Dems. Not one single party can honestly hold up their hands and say "We’re clean" because the whole bloody lot of them are dirty. The NHS, once the pride of the country has been politicised and, worse, eyed up by greedy politicians who, for a favour, for a ‘consultancy fee’, for a promise of a directorship, or for simple political gain are, day by day, privatising the NHS.
Hospitals are (arguably needlessly) being ripped down and rebuilt under the auspice of Private Finance Initiatives, leaving them in hoc for decades or, like Whiston, going begging for the government for a bail out because the repayments to the PRIVATE SECTOR are bankrupting them. Or the case of some, like the Royal, in Liverpool, left partly completed by the shamed and bankrupted Carrillion group. According the the Guardian, PFi repayments are now costing us £10 billion a year, leaving the tax payer saddled with £300bn in debt – while the contractors are rolling on money. Meanwhile, in parliament, it’s used as a game system, fingers pointing (when it suits). As it happens, it was that wet fish John Major (Conservatives) that first started using PFI, which Labour at the time called a "a back-door form of privatisation". Indeed, because of this controversy, it was rarely used – until Blair and New Labour got in power in 1997 and went to town with it.
And within the hospitals, the (often bland, occasionally inedible) meals are contracted out to the private sector, to the lowest bidder. The ancillary staff – cleaners, porters etc) are replaced with (often) minimum wage contracted workers. From what I’ve seen (and I spend a lot of time in hospital), these are overworked, underpaid and stressed by pushy (none NHS) managers. Even within the NHS, nurses are leaving because they have had enough. Low pay, low moral, over-worked, no pay rise for a decade (like most of the public sector – but not like the MPs who regularly award themselves pay rises of up to 16%).
Communal rooms for patients? Forget that, they were monetised as well, sold off to the private sector. The rooms were re-purposed as extra wards, or waiting rooms, the socially-orientated entertain package (aka card, jigsaws and tv in the corner) were hastily replaced by a screen over every bed, offering – for a price, of course – TV, movies, diabolically and unusably slow internet. The replacement, delivered of course by private contractors, typically charge a whopping and wholly extortionate £10 a day package. Ten quid a day (or part thereof), per patient. Magnify that by 500 for a typical full hospital, by another 365, by the number of hospitals so privatised… I won’t comment on the fact that of the ‘wide range’ (just 70-80) of movies (at Whiston) over half have been shown on TV; then there’s the Hospedia welcome screen, where, month after month going back I don’t know how long, they can’t even be bothered to proof read or spell check basic words like ‘sevice’ (sic).
Let’s go back to nurses again, and my controversial comment that back in the day, *nurses cared. Again, not blinkered, some of the nurses in the past where indeed horrible, while the majority of nurses today are awesome – but there’s a difference. And the difference comes down to money, to profit, to politics. Suffice as to say that some of the ‘nurses’ today most assuredly are NOT what I, or any old-school health worker would consider a ‘real’ nurse!
Herein lies the problem: In the past, nursing training was progressive and ability based. You started as an auxiliary, or SEN, then, if you wanted, SRN, then you could, through hard work and dedication, become specialised (e.g. a midwife), or promoted, such as a ward sister, a matron. What has changed is the nursing degree, and while I am not involved in the medical profession, as I patient, and regular inmate of various hospitals, I see, and hear the difference. People are being promoted to posts they simply are not qualified to have – on the basis of a piece of paper. So, for instance, you have midwifery managers that have never delivered a baby, telling nurses that have brought thousands of people into the world how to do their job, how to be more efficient, how to meet targets – like the infants and the mothers are bars on a tally sheet. Dehumanised.
Similarly, you have a multi-fold problem with nursing which, frankly, an idiot could have foreseen, but not, it seems, parliament (most of whom have private care, paid for by the tax payer in any case!).
For a start, you have the issue of nurses who are looking for a cheap and easy degree. They are not after a post in a caring profession, they absolutely do not want to lower themselves to empty catheters, clean up vomit, let alone wipe the arse of some 20-stone dementia patient! No, what they want is the academic piece of paper, then they are gone. They are, essentially a drain on the NHS. Parasites, essentially. This results in deteriorating patient care and more work and needless stress for ‘real’ nurses. They are, thankfully, in the minority, but it’s naive of the NHS to pretend it’s not a problem.
The other – worse – side of the coin is that of exclusion. There are many people who want to be nurses, who, with the old system could and would have become nurses, but are now excluded because they are not academics!!! (Yes, I know a triple exclamation is bad grammar, I cannot emphasise enough my disgust at this situation). Either though literacy, poor school experience, or a simple lack of self-belief, a great many empathic, caring individuals are being either forced out of the NHS, or barred from entering by the wall of "you need a degree to nurse".
Me, do a degree? I’m not smart enough for that, I just want to look after people.
So instead of being nurses they end up as minimum wage carers – for the private sector. What a loss to the country! Surely, I think, the GMC, the RCN, etc, and the government can, between themselves, find a solution, a midway point, one that does not bar, nor denigrate or undermine those who want to nurse, but not necessarily to be a qualified nurse. For instance, a look on the NHS career planning page and associated pages goes into detail about (minimum) wage, qualifications needed and so forth, but remains fixated on young (cheap) students and not, for instance, an unqualified 30-year-old care assistant that wants to move into nursing, but is not comfortable with studying for exams, especially at degree level.
So, to more recent experiences over the past year.
To start, I have a lot of physical (and mental) health problems, some of which – in combination – are rare to the point of being unique, so I’m not your usual patient. I also tick the box of being ‘exceptionally gifted’ and ‘off the charts’ for intelligence and while I’m not an academic, I have no problem reading and understanding detailed medical reports, or indeed a range of scientific research papers at post-doctoral level. I am, as Yogi would say, smarter than the average bear, so when some NHS grunt (whether a nurse or a consultant doctor) refuses to listen to a thing I say and dismissively announces that I "wouldn’t understand" it gets my back up real fast. Psychologists would understand this as ‘triggers’.
May, 2017, forward
I was having all sorts of problems, my blood pressure is all over the place, I’m having anxiety issues, memory issues, my lower back’s killing and my kidneys ache. So, (already having a long history of kidney failure), I went to my GP – who asserted that I already have a great many health problems and not to worry about it. Repeated consultations were met with the same polite dismissal. In hindsight I should have requested blood tests, but they did at least test for bladder infections, ruling that out.
My system decided it has had enough, my blood pressure went berserk and my body started shutting down. I couldn’t even form a sentence to the emergency services, my eyesight went really blurred, and my fingers and toes were a study in tingling pins and needles. Basically, I was dying. Ambulance job into Whiston with bilateral kidney failure, it turned out (AKI stage 3). Pretty much, they shoved a catheter in (against my objections), changed my bladder relaxant meds (from 5mg oxybutynin, to 15mg darifenicin and 50mg mirabegron) and, having got me stable, sent me home.
While the catheter probably helped I knew from past experience that it wouldn’t actually work because, well it’s complicated, but who listens to me, I’m only the patient. I don’t have a medical degree, I’ve only lived with the condition for ten or more years, what would I know? *mutter*.
On the plus side, my urology consultant – who’s actually a great guy and well respected – apologised on behalf of the NHS for me ‘falling off the radar’ for the past decade, saying it should never have happened, that regular follow-ups (e.g. blood tests, ultrasound scans of my kidneys) should have happened but, basically, I was forgotten by the system, and that he’d take charge.
AKI secondary to obstruction – cause unknown
Hereditary spastic paraparesis (HSP)
chronic kidney disease
More tests in Southport hospital. That was fun. Let’s not do THAT again, ever, thank you.
End December, 2017
Feeling sick as anything, blood pressure is rocketing; I’m a mess, really. Also my latest blood results suggested I was going into renal failure. The emergency GP dismissively said I’d be fine, just double my meds and see my own GP in the new year. The emergency GP was a complete pillock. I should have ignored him and gone straight to A&E!
Saw my GP (a new, young doctor who I am quickly growing to respect), who, seeing my latest blood pressure and blood test results (eGFR 16, etc), started phoning the hospitals in the region to get me a bed, today. Ended up in Whiston, like you do, and by the time I was finally seen by a doctor, some 7 hours after admission, was met with the medical equivalent of this:
"Oh crap, oh crap, don’t panic Sir, nothing to worry about, we’ll move you to ICU if need be. Spud’s on the job, Bob." *grabs phone and started calling for consultants*.
My eGFR was down to 10 and failing, my blood pressure too high and my potassium was at 6.4 and rising and, by now, while I feel OK relatively, I’m too far down the road to risk surgery, the anaesthetists just wouldn’t risk it – and here’s me, on the point of needing dialysis.
Anyway, filled me full of drugs, fluids, antibiotics etc, and found me a bed, got me stable, followed by a nephrostomy, inserted a stent, cancelled the doubling of my amlodipine (back down to 5mg), and took me of the mirabegron because the pharmacists warned my kidneys were to far damaged for that drug (cut off point was an eGFR of 16)
My consultant requested I stop shouting at the nurses and his understudies (I prefer to think it was a lively debate) over my blood results. I really have issues with people thinking they are smarter than me, and lying to my face. If I ask for today’s blood results I want today’s blood results. I do not want to be asked, ‘Why?’, I do not need to be told that I ‘wouldn’t understand them’ (because actually I do, thank you. Do not make assumptions about me!), I do not need to wait until you can ‘get a consultant to explain them to me’ and I get really REALLY hacked off when the junior doctor fobbing me off is telling my she can’t access the system – when I can clearly see she is holding a printout of my blood results, with my name and hospital number on it, and just doesn’t want to hand it over. The freedom of information act and PALS back me up here, if I ask for my records you have to give them to me, within reason. One of the consultants argued that "we take the long term view" to which I replied, "That’s cute, I’ve only been in a few days – I’ve been monitoring my own blood results for over ten years, because no-one else has bothered looking at them." (As mentioned above, I have a history and issues with negligence at that hospital!) Impressed him anyway and he got the ward sister to get my printouts, if only to keep me quiet. 😀
Acute on chronic kidney failure
(Hereditary) spastic paraparesis
chronic kidney disease
Started having real problems with breathlessness and high, spiking blood pressure on the least exertion. Not a good thing! My incumbent GP shrugged it off and told me to double my amlodipine – while failing to comment on the fact my kidney functions, already bad, were falling again, slightly. See, this is why I have trust issues, it’s not really paranoia when you know they are keeping things from you! So, I took myself off to A&E, again.
They may well be experts in their field, be able to reel off scores of medicines, can label all the organs and bones in a patients body, BUT, unless dementia or (temporary) forms of confusion are involved, the patient is a world expert in themselves. Many know their entire medical history, all the drugs they take, where aches and whether this ache is normal for them. So when some smarmy git whose first sentence, after perhaps glancing at your notes, is "so, what brought you here?" – following by dismissing your answers (and incidentally being wrong ‘cos actually doctor and consultants are not all-knowing) it rather grates.
And this too, as much as anything, it the problem with the NHS today. There is the constant feeling and impression that you are not there to be treated, rather you are a statistic. While the ideal is you go into hospital, they cure you, you go home, the reality, often, is bureaucracy, and politics. Has he been seen in x hours, was the operation within x months, was the stay shortly than x days. And my favourite, from a doctor: "It is not hospital policy" (to keep patients in a day longer than necessary, even if we have neither cured nor diagnosed the condition). More damningly, the nurses had been told – emphatically – that I would be going home that day – even though I was awaiting a CT-scan for a potentially life-threatening condition (query pulmonary embolism (PE)) and, seemingly, the consultant had already decided – without evidence – the results. Hint: expert intuition, while often correct, is not scientifically sound; you are sending the patient home because you think it will be alright.
The really stupid thing is when I went in – with manically high blood pressure and breathing difficulties – I point blank told them it wasn’t a PE, that I’d had one before and this was something different, to which the answer was, right, so we’ll keep you in and test exclusively for PE and besides, there’s all sorts of PE and we’re the experts. Again, I don’t care if you think you are the expert, I don’t care how many books you’ve read, or how many hundreds of patients you’ve treated, I know my body, and I know what an embolism is and what it feels like. Yes, you can indeed have blood clots and never know, until the moment they kill you, but the point is when they do make themselves known, you know about it!
So, after ignoring every single thing I told them, twice needing to wheel out an ECG machine because my at rest heartbeat was well into the tachycardia range, and adding 1mg doxazosin (alpha blocker, for high bp), and a course of trimethoprim, 200mg (antibiotic)* to my daily meds list, they ordered(!) me to go home because there was ‘nothing wrong with me’. The number of times I emphasised that I did not have the PE they were looking for, and that you will never see or monitor the problems – caused by even slight exertion, such as making a drink or going to the bath room – because you pointedly will only examine me if I am at rest, prone, on a bloody bed. It is institutionalised blindness and breathtakingly arrogant. The doctor summarily booting me out (as per ‘hospital policy’) did at least add that if I was worried, and if my systolic did goes over 200 again that I should go to A&E.
*(For enterococcus. Bladder infections are common if you have a catheter).
The day after being discharged I got an outpatients appointment for a heart scan (for the problem I apparently don’t have). The annoying thing is one of the first doctors I saw on admission believed I needed a heart scan and requested it for the next day. Someone – and I’m thinking here the pretentious respiratory consultant – overruled the request, purely on the basis I’d had a blood test and my heart looked alright on that! It may well be alright, I most certainly hope that proves to be the case, but he was not a cardiologist, and even if he consulted one, you cannot diagnose something like that based on a single blood test from a patient lying in bed for the best part of a week!
Oh yes, I almost forgot, I was due to have much needed surgery (on my kidneys and plumbing) on the Monday, arranged months in advance. Involving dyes and cameras, and scans, and scraping bits off for biopsy and so forth – but they had to cancel because my heart rate and blood pressure was ‘dangerously high’ and they couldn’t risk it. But by all means, get out, Mr Ackerley, there’s nothing wrong with you, hospital policy and all that.
So, basically, get discharged (with no diagnosis), tick all the boxes for ‘treated’, thus pleasing the bureaucratic overlords, then walk back in and start the dance again!
Treated as pulmonary embolism
UTI (Urinary tract infection)
spastic paraplegia (another name for HSP)
previous PE 2011
Right sided nephrostomy and bilateral stent insertion 2017*
*Wrong! It was a single stent (but perhaps should have been bilateral), and it was in 2018 – (i.e. only a few weeks ago).
It also removes all reference to existing kidney failure, further stating there was no evidence of acute kidney injury – despite the fact I had a planned operation for this cancelled while I was in, and despite the hard, unassailable fact that a few lines down it flags a creatinine level of 295 and advises "note elevated creatinine ?AKI ?CKD, suggest repeat" The following page notes an eGFR of 20, this is stage 4 kidney failure, and, like the creatinine result, indicates clearly that my kidney functions have deteriorated slightly since last month.
A few days later – despite doubling and effectively trebling my blood pressure medications – I am still having chest pains (read cardiac), trouble breathing, and spiking blood pressure, with my at rest pulse now passing the 128 mark. So I take myself off to the walk-in center (having lost nearly all confidence in my current GP clinic) – and they aren’t too happy. Firstly, they can’t do anything for me, secondly I am so bad I should never having taken the bus to town, and most definitely will not be allowed to take the bus to A&E in case I have a heart attack en route, plus I have to wait for the ambulance, finally I am well into the realms of, and I quote, "malignant hypertension and tachycardia"
Some 7 hours later, mostly twiddling my thumbs on trolleys and wheelchairs, I am granted an audience with a doctor – who goes out of her way to tick me off from the moment she opens her mouth. Not just the words used, it was the tone, the attitude, the presumptions and worst, the rolling the eyes! Zero professionalism! SSDD Whiston!
Me: ‘Malignant hypertension and tachycardia’ (both of which are serious and can be life-threatening).
Doctor: (Eyes literally rolling – you could almost see her thinking, ‘God I hate Google, these patients enter one search and think they are experts’),
‘Really? Where did you get those terms from?’
Me: The doctors at the walk-in center. I do have a history of high blood pressure, because of kidney failure, and have a blood pressure monitor at home, but the diagnosis was theirs.
Doctor: ‘I see’ (almost with an audible groan). ‘And do you know the state of your kidneys?’
Me: ‘Crap! They are knackered’
Doctor: How do you mean? Precisely? Do you know your latest results? Your creatinine? Your eGFR? (Definitely probing!)
Me: Last one before today was eGFR 20, creatinine 335. You have the printouts in front of you, surely you’ve look at them.
Doctor: ‘I just wanted to see if you knew them’ (God. he’s one of those patients, they are worse than the damned Googlers).
Basically, it seemed to bother her immensely that I knew – and understood – the state of my blood, my BP, and could recite them. Anyway, she says, your blood pressure is fine now*, you can go home.
Did you not listen to a single word I said about ‘on exertion’? Really? You have me sat for 7 hours before you take my blood pressure – and even then you conveniently ignore the ‘at rest’ heartbeat racing at 126 beats per minute shown on the monitor in front of you.
So, she goes off to talk to a consultant or two, who recommend I start a course of bisoprolol, 2.5mg, immediately (beta blocker, for BP, specifically to reduce pulse/heartbeat). then says, go home Mr Ackerley, there is nothing wrong with you!
Her final solution, bizarrely, was to ‘stop measuring your blood pressure’ – which is a direct opposite to NHS recommendations. I check my BP daily, and record it. If I feel there’s a medical concerned I’ll record it more frequently. This – apparently – is obsessive behaviour and *I* am the clearly the problem.
Actually I do have a form of OCD, but that’s besides the pint, hmm. Would I have died if I hadn’t kept aware of my blood results, and my blood pressure in October and again in January? Yes. It’s not even a wishy-washy ‘chance of’, it’s a stone cold certainty that without immediate attention I would have gone into complete renal failure and been dead within a matter of days. Typically, I read, without kidneys (or dialysis) you have a week to live. Perhaps the doctor in question is reading this, rolling her eyes (again) and saying, ‘I hate those know-it-all types, with no training, unlike me’ (as she flips her hair, dramatically). It seems in this politically correct, government-targets-driven NHS, patients that look after themselves – because the system fails them over and over and over again – are part of the problem. Go figure. Being a doctor would be so much easier if it wasn’t for us pesky patients!
Here’s the thing
I know I have a lot of health problems. A caused B caused C caused D, E and (query F). I’m used to being ill, it’s like an old coat, so when, proverbially, one of the sleeves drops off, I know something is wrong. So, in the past week, following ‘something new’ wrong with me, they have doubled my calcium channel blockers (for high BP), then put me on alpha blockers (for high BP), and a course of antibiotics, ordered a heart scan, then put me on a beta blocker (for high BP, specifically to reduce fast pulse / heartbeat).
And every doctor and consultant I’ve seen this month (bar one) has either been arrogant and dismissive, or looked down as they said ‘nothing wrong’. If something looks like shit, and smells like shit, then I’m going out on a limb and say this crap needs sorting!
My current BP is a lot closer to normal today (since effectively quadrupling my meds), but – on exertion – I still have the breathlessness, tightness in the chest, and stabby pains in the heart, but what do I know, I’m just some annoying hypercondriac! I mean, lots of very clever doctors and consultants have – pointedly – told me there’s nothing wrong with me. Well, they have diagnosed hypertension, the acute and chronic kidney failure, the motor neurone related disease, the neuropathic/neurogenic bladder, but they don’t matter. In fact, my ‘at rest’ systolic has been as high as 272 (something poo-poo’d away by doctors, but seen by my wife, with some alarm). [Noting that at least my urology consultant is keeping tabs on me.]
Anyway, it’s not like Whiston has ever had to apologise to me in the past for a long list of failings and mistakes (oh wait…).
Not like consultants at Whiston have ever had to apologise for killing a patient (No, just second, a Google for "whiston hospital medical negligence" lists some 26,000 results (including adverts)).
Results such as deaths caused by sending people home with known life-threatening conditions (have to keep the Bed Manager happy, after all, hospital policy!)
… or deaths by misdiagnosing medications
… or been investigated for actual corporate manslaughter
… or (and the list goes on, and on, and on).
Respect, and trust has to be earned, it’s a slow process to gain, but once sacrificed… and they (at least Whiston hospital) sacrificed that nearly fifty years ago when nurses stole my silver Matchbox toy car (which I retrieved from the communal toy box), and my box of Bassets which, along with the chocolates they stole from the other children on the ward, they used to eat in their breaks. I might forgive, but I never forget.