Has the NHS become the No Health Service

Or has medicine generally lost its way?

Over the last two weeks I have had several people ask me about the health issues I was experiencing during 2022-2024. My experiences of the National Health Service (NHS) is an exemplar case that shows how, for a number of reasons, the UK health system has entirely lost its way. In two separate sections I will first describe the two health issues and my general experiences. I will return to discussion of how the NHS is failing you, me and everyone in the third section at the end.

I had been considering writing a post like this for a while, but my other work kept getting in the way. I can’t use that excuse this morning, so here goes…

Biliary Colic, Cholecystitis, Cholangitis or Something Else?

During 2019 I had my first experience of the excruciating pain that can be an upset gall bladder. Those of you who know what I am talking about might liken it to the pain John Hurt’s character would have felt had a real alien neonate been trying to burst out of his chest.

Biliary colic, cholecystitis and cholangitis are actually three similar yet completely different causes for pain that eminates from the gall bladder: (1) Biliary colic results from the obstruction of the passage of digestive fluids from the gallbladder via a bile duct, usually by a gall stone (cholelithiasis); (2) cholecystitis is inflammation of the gall bladder wall which itself is usually caused by obstruction of the bile ducts by a gall stone; and (3) cholangitis is inflammation of the bile ducts themselves. The first, biliary colic, is usually the more acute presentation that causes excruciating pain in the middle area of your back and the area below your right lung and rib cage in the front, and the latter two are often the longer term or more prolonged but no less insidious pain causers. For my own part, I was having bouts of what appeared to be all three. The acute phase would begin and I would end up curled in a ball on the floor on my left side, sometimes in so much pain that I would pass out. After 2-3 hours the acute phase would end and I would go through 12-24 hours of aching in my back that was often accompanied by either a strong headache or a full blown, lock me in a dark room, migraine.

This happened at least twice in 2019, another couple of times in 2020, and in 2021 I had two bouts that were so bad that I was also visited by pretty severe jaundice. My liver decided being a liver wasn’t fun any more and my whole body turned a wonderful shade of dark yellow. Not once, but twice. And about three months apart. I was working on a maternity health modelling project at the time and a wonderful older obstetrician and gynaecologist with a significant history in abdominal and hepatobiliary medicine who decided on viewing my sunburst ochre pallor, and on hearing that I had spent more than 15 hours waiting doubled over in pain in an A&E that was staffed by tattooed unkempt Band 2 and 3 staff who could do little more than take observations (pulse, temperature and respirations) behind a door in an otherwise open hallway and had NOT been seen by a nurse or doctor, that three days of intravenous antibiotics was necessary - because it looked like an infection might have set into either the bile ducts or my pancreas. That done, he also said I needed to find a local GP who could order an ultrasound of the offending bile-producing organ.

Trying to get into a GP in the area where I was living at the time was a nightmare. Many either were not taking new NHS patients at the time or worse, were not taking on new patients at all. Several were also of the fixed mind that unless you had by that point had at least two covid-19 mRNA injections, or sometimes three, they were not willing to see you in their clinic at all. So much for the ‘voluntary’ and non-mandatory covid-19 injections. This, at least, was where I got lucky. Two of the wonderful people in my research collaborative knew a GP in the next town over who, as luck would have it, was not pushing covid-19 jabs and was a second generation doctor whose interest was patients, not propaganda. She, and one of her parents who I would come to meet later, were the old school doctor type that listened and tried to find out the cause of your health issue rather than simply treating the symptoms of the complaint - like so many young doctors today who simply want to get through their alloted list of patients in 7 or 15 minute increments so that they can get on with their TikTok lives.

This is where it got interesting. The ultrasound showed no real swelling of the gallbladder wall, no issues with the bile ducts, and only minor age-related “sludge” in the gallbladder itself. Other than the excruciating pain I had endured, the images of my skin looking decidedly first-term Trump-ian and blood tests that showed my liver, like Elvis, had vacated the building, you would never have known there was a problem. In any event and just in case, the GP referred me to the hepatobiliary consultant clinic at the hospital. As for the hospital and our wonderful NHS? They said the waiting list was over two years. If anything needed to be done, it wasn’t going to happen fast or it was only going to happen as and when something became unbearable and/or ruptured.

In the meantime, I had been reading a lot of old medical literature and clinical research papers looking at the issue I was having and the various treatment pathways. Anything published in the last 7-10 years simply told the surgeon: “remove the gallbladder, go play your next round of golf, job done.” However, there was a lot of historic clinial trials and research into a natural bile salt called Ursodeoxycholic Acid (UDCA). Japanese doctors had discovered UCDA in the 60’s or early 70’s from, as the first part of the name - urso - suggests, bears. There had been many clinical trials of UDCA involving several thousand patients. I reviewed the 25 most complete and relevant of these trials (see spreadsheet image below) and my analysis found that when administered for 18-24 months:

• around 30% of UDCA recipients at a dose of 500-750mg per day saw complete dissolution of their gall stone and biliary colic issue and had no further pain or symptoms. These patients may need regular brief periods on UDCA in the future if they started to show relapse, but this was not the focus of most of the clinical trials.

• around 40% saw partial (50%-80%) dissolution with maybe only one additional biliary colic bout during the 18-24 months after commencing UDCA treatment.

• the remaining 30% appeared to have little or no change in their symptoms.

The decidedly minor side effects of taking UDCA across all of the reviewed studies were limited to:

• occassional loose bowel movements or diarrhoea in around 6-8% of recipients.

• severe diarrhoea leading to ceasing UDCA in around 1% of recipients (most of whom ended up in the it didn’t work 30%).

• occassional mild or moderate increase in serum aminotranspherase in around 3% of UDCA recipients.

What was interesting was that of the 30% for whom it was found UDCA had little to no effect, several of the studies had used this classification to hide an odd ‘gotcha’. In those studies the patient, usually during the first 3-6 months, had a single bout of biliary colic and as a result were immediately given a cholecystectomy (surgical removal of the gallbladder). This made it difficult to know whether UDCA had actually failed for them or whether they just hadn’t been on it long enough and the surgeon had knee-jerked too early.

Overall, taking UDCA for a prolonged period (12-24 months) was beneficial for most people and for a good percentage, meant they could avoid a general anasthesia and surgical removal of the gallbladder. The current cost of UDCA in the UK for an 18-24 month period was less than £200 compared to a £3,000-5,000 operation. So why is it that recent studies have found at least 60% of hepatobiliary specialists don’t know about UDCA?

Here’s where the murky footsteps of big pharma greed make an appearance. At some point in the last 15 or so years UDCA came out of patent and became a relatively cheap medicine with several even cheaper generics hitting the market. As with all medicines that come out of patent, it was no longer bringing in any significant profit for the original manufacturer. It seems that from around 2007-2008 the original manufacturer started paying funding suggesting that surgeons publish papers that, completely antithetical to the previous 30+ years of studies, incredibly claimed UDCA did nothing to alleviate symptoms and was a worthless medicine. Don’t bother, say some of the studies. Just go straight to surgical removal. If that one pharma company wasn’t going to make profit from selling UDCA, they were going to make certain nobody else was either. UDCA seemingly got relegated to the annals of history.

The kindly GP I had been recommended to by my research colleagues - nay, close friends - was willing to listen to me regarding UDCA and actually gave me prescriptions for it for the entire time I was awaiting any sort of response from the hospital consultant’s clinic. I took UDCA for a little over 18 months. I had one very minor bout of biliary colic about 4 months into the treatment but, that one bout came during a period when I was also trying different things that I had taken out of my diet to see which, if any, when reintroduced, might be aiding in my gallbladder unhappiness. You see… I was interested in the cause because the cause will often lead to the cure. I am no pharma company’s patient for life.

But we’ll come back to that later.

Posterior Subcapsular Cataract, Meibomian Gland Dysfunction, or Computer Imaging Artefact?

At around the same time as the 2021 bouts of biliary colic I started to have issues with my eyesight. Some days, and often for stretches of 3-7 days, I would awake to find my vision was quite blurry. I didn’t wear glasses and aside from the occassional age-related ‘floaters’, had not had any real issues with my eyesight for many decades. I had even had multiple eye tests as part of the health checks for pilots and student pilots over the last two decades, exceeding the requirements every time.

My observations of this vision disturbance were that I would only be able to focus, with some significant effort, on things that were within a very small range of about 2 feet - between 3 feet and 5 feet in front of my face. Anything too close and anything beyond 5 feet was so blurry that at times even signs with very large letters were becoming impossible to distinguish. Several days later I would get up and everything would be back to normal. I would have normal vision for a couple of days before the whole cycle of scary bluriness would start over.

After the third or fourth cycle of this I went to the ophthalmology specialist clinic at the local hospital and because it was acute, was seen the same day. Oh… and when I say ‘day’, I mean I was there all day as one of the first people through the door when the clinic opened at 9:30am until when they were closing the doors at 5:30pm. Most of the day was spent sitting in a chair in the reception area waiting to be seen, and it was only when, at about 3pm, the person who had driven me there went to ask the receptionist whether I would be seen that day that the receptionist realised she had forgotten to even put me in the queue in the first place! From then on I was rushed through a series of “scan this”, “image that”, “let me insert these drops”, “scan something else”, “pressure test this”, and onto a final test at 5:30pm that, because the nurse had gone home who was trained to use the new machine that went ping (a Monty Python reference for those of you who are under 40), they found they could not do. The young first-year opthalmology student consultant’s diagnosis? Go home. It’s probably migraine related blurred vision and will go away in a day or two.

According to her I was having migraines 3-7 days out of every 10-12 days and that was nothing to investigate? Yes… nothing to see here, move along. Next patient please!

It didn’t go away. It kept coming back. In trying to work it out for myself because, as with the biliary colic thing, I assumed the only person interested in truly fixing it was me, I started to make notes on what I did, ate and how I slept in the days leading up to each blurred vision event. Two things stood out. First, that on the night of the last day of clear vision I would sleep a lot heavier than most other nights and not awake during the night at all. Second, that on the days I had blurry vision my eyes were incredibly dry and itchy and I was having to use moisturising drops and saline drops constantly. On the days when my vision was clear there would be no dry eyes or itching. This led me in a roundabout way to investigate Meibomian Gland Dysfunction (MGD).

There are two types of lubrication that your adnexa (the area around your eyes) create, and both are equally important. The one most people are familiar with is tears. Tears are that clear salty saline-like solution that keep your eye ‘moist’ that you create from lacrimal (tear) glands. The second type is an oil called meibum (may-bum… yes, I know exactly how funny that sounds to the 8 year old in all of us). Meibum is created in the tiny meibomian glands that live in the lower lid of your eye. MGD can happen when the glands get blocked, when the quality of the oil they secrete drops, when you are having allergic reactions or when there are issues with some hormones in your body. There even used to be a documentary that was available on YouTube where they showed the oily film over the lens of the eye in a particular type of imaging scan but I cannot locate it at the moment.

In any event, there is one other cause for MGD that many of our young ophthalmology students seemingly don’t even learn about any more. The usual suspect websites (WebMD and Johns Hopkins) don’t even mention it nowadays. That is, when your eyelids don’t completely shut during sleep and the lens of one or both eyes becomes dry overnight. This issue should be the easiest to diagnose and is certainly the easiest to treat…

Except when doctors are no longer trained to diagnose it and there is no financial incentive returned from the relatively inexpensive ‘cure’.

After another two cycles of this blurry vision syndrome I went back to the ophthalmology clinic at the hospital and was put through all the same tests again… except that this time the nurse who was trained on the new cataract imaging machine was in.

When I was finally ushered in to see a different, second year, student ophthalmology consultant she focused on one image from the new cataract imaging machine that she claimed showed I had a posterior subcapsular cataract (PSC). PSC are a type of cataract that develops on the back of the lens of the eye, and are known for developing from nothing to blindness quite rapidly. By her diagnosis I was going to be unable to drive in 6-10 months and pretty much blind in 2 years, at which point the kindly NHS would put me on another multi-year waiting list for a cataract replacement surgery.

Helpfully however, she suggested that I could jump the loss of my driving license, 2 year wait for blindness, and the prolonged waiting list for cataract surgery, if I saw a private ophthalmology consultant like the one she was training under, and paid £3,500-4,000 for cataract surgery right now. I couldn’t afford to go blind and lose my job but, on an academic’s salary, I couldn’t afford the huge up-front cash fee for the surgery. Kind friends even offered to front the huge sum of money for the surgery. At this point I was quite worried for my future.

Is the NHS broken and No Longer Fit For Use?

In both cases it became quite clear that the only person interested in actually finding (a) the root cause, and (b) the cure, was me.

My gallbladder and biliary colic situation came down to something really stupid that, had anyone taken a full history and assessment, would have jumped right out at them. One item had changed in my diet at the time that, along with a little middle aged dad bod-ness, was a red flag. I had taken to replacing much of my daily caffiene ingestion with lemon and ginger tea. And no, not the lemon and ginger tea that Twinings put in a silly paper bag that you dip in hot water. Proper lemon and ginger tea made by boiling grated ginger and lemons in a pot to make a syrup that we would freeze as ice cubes and place in steaming water.

Ginger, you see, is a known irritant for gallbladders!!!

Ginger increases the flow of digestive bile and, if you are already developing gall stones or have a bile duct inflammatory issue, will quite literally push you over the edge.

Especially if you are drinking 5-6 cups a day each with 6 ice cubes of natural ginger and lemon extract syrup in them.

I was, for want of a better term, unintentionally poisoning myself. Most days would be okay but if I ate something greasy for breakfast (mmmm bacon on Saturdays nom nom nom) or something with rapeseed/canola oil pastry on it for lunch (mmmm mince pie from the bakery at work) then my galllbladder would do back flips and I would end up on the floor, writhing in agony. Damn. That was stupid.

I removed the ginger and lemon tea from my diet for 4 months and then, in order to prove the case, had one day where I again had 6 cups over the course of the day. That evening was the one day while I was taking the UCDA that I had the minor biliary colic incident. QED: Problem solved. I now still enjoy the peppery goodness of ginger and lemon tea - just at a more moderate 1 cup in any given 24 hour period. I have since had another ultrasound of my gallbladder and bile ducts which found nothing remarkable. In other words, no more gall bladder pain.

You may at this point be wondering what happened to the hepatobiliary surgical consultant referral? This is where the NHS truly showed how broken it is. When the referral was first made the only response the kindly GP and I got was to tell us the waiting list was two or more years and to sit back, relax, and enjoy the ride. On Thursday the 7th March 2024 (this year) I received a letter from the consultant’s clinic at the hospital that was (a) dated on the 14th February 2024; and (b) said that if I did not respond within 14 days to say I still needed the appointment, I would be dropped from the waiting list. At this point, and given that by the time the letter had wandered through the hospital’s systems, been printed, popped in an envelope and passed through the postal service 22 days had passed, I assumed I had been dropped from the list. Being as I had treated myself with UDCA and had used the intervening 18 months to work out the cause of the issue I didn’t really need the appointment any more, so I went about my life. In June 2024 I received a cryptic phone call from an elderly woman who said she was from the hospital consultant’s clinic, saying that I had finally floated to the top and qualified for a telephone consultation. I told her about the letter I received and that I had assumed I was, as it had said, dropped from the waiting list. Oh yes, she said. But so many people got dropped from the list that the consultant’s students had nothing to do, so it was decided that we would run a telephone clinic to check in on all the people who got dropped. I told her I had cured my problem myself and as such, they could give my slot to the next person. Thanked her and again, went about my life. Except that wasn’t the end of it. In August 2024 I received a new letter from the hospital saying I had been scheduled for surgery and needed to come into the consultant’s clinic in 7 days time. I called and again reitterated that I no longer needed the appointment. Thank you very much and have a nice day. Then, around two weeks later I received another letter saying I had been scheduled for a particular named consultant’s surgical list for cholecystectomy. I was to arrive at the hospital on a particular day at 8:30am having fasted for at least 12 hours beforehand. I gave up at this point and stopped bothering to respond. Being concise and polite simply wasn’t working.

Returning to the blurred vision and PSC, what I had found most curious both as a photographer and as a health researcher was that in order to make this diagnosis, she had selected one of about 12 images the machine had taken, and zoomed in not 10x. Not 100x. And not even 1,000x. The indicator at the bottom of the screen showed me she had zoomed in 10,000x to a point where the area that she said showed the beginnings of the cataract was only four single pixels, each about two inches square at this point, of reduced clarity. Anyone familiar with how camera lenses works knows that many lenses, even expensive Carl Zeiss lenses for clinical use, can produce lens artefact or aberration. Further, a miniscule fleck of dust on a lens can result in exactly the type of reduced clarity over a few pixels that she was telling me was a rapidly developing and critically blinding cataract that needed immediate attention.

Treatment for MGD involved first AVOIDING all the Hycosan and other eye drops and ANY ointment that contains Vitamin A and preservatives that the NHS recommends because you end up needing to use them almost constantly. All the drops do is change the lubrication signals around the eye and your glands become so used to the presence of the anti-inflammatory and anti-histamine like ingredients that they fail to do anything to fix the situation on their own. Also, the preservative-containing lubricant ointments can actually harm your eye if used for prolonged periods. Further, the only ointments available now on the NHS are ones containing Vitamin A (Vit-A-Pos etc). Calling retinol a vitamin was a sick and greedy joke wrought upon us around the time of WWI, and prolonged use of Vitamin A creams thins your skin. I have seen academic papers with images of little old ladies whose eyelids are near transparent from prolonged use of Vitamin A containing eye lubricants.

In the end I started to use simple sterile saline solution during the day and to import Lacri-lube (because it was pretty much impossible to get in the UK - the NHS were buying up all the supply for ICU patients to prevent EXACTLY the same issue I was having!). I also use a clear medical tape at night, just like they do for ICU patients, to tape my eyelids closed. This ensures that during the night my lids don’t come open and I don’t end up with a dry stripe across the lens of my eye. The small bottles of sterile saline cost £1 at any local pharmacy. The Lacri-lube costs £3.50-5.00 per tube and lasts about two weeks. And a nice nurse grabs me a role of the clear plastic Transpore from supplies every other week. Total cost: approximately £15 per month or under £200 per year versus a £3,500-5,000 surgical operation that would not have actually solved the real cause of the problem and would likely have still resulted in both the £15 per month AND the need for glasses.

My blurry vision issue has ceased. I again could pass a pilot/student pilot’s license eye test and the world, at least as far as my vision, continues largely unabated.

But I am sure that the NHS both counts me as a “diagnosis” for each condition… And given I haven’t had either surgery they probably also count me as a “cured” and “satisfied customer”. I was cured by my own hand (with some assistance by a kindly old-fashioned GP). And as far as the tertiary (hospital) component of the NHS is concerned, would be happy if I never had to interact with their inefficient and incredibly stupid new breed of young doctors ever again.

A curious prologue

Several people have emailed me graphs in recent weeks showing that, since this new cataract imaging machine has been put into use across NHS hospitals in the last 24 months or so, cataract diagnoses have increased up to 400-fold at some hospitals, and up to 1,000-fold across the NHS. While some on social media blame this on the Covid-19 vaccinations, I have my own very different suspicions…

Curious, isn’t it, when you consider that cataract diagnosis received increased funding, a cool flashy new imaging machine, and the clinical guidelines were changed, and this all happened in 2021-22. Is it possible that many of these, like mine, could all be mis-diagnosis by inexperienced clinicians who don’t understand how to use the machine to perform the diagnostic test or what they should be looking for in the resulting images?