Wednesday, 1 October 2014

So How Am I?

A bit like a Mum who doesn't want to tell her kids Xmas has been cancelled until Santa actually confirms it himself I've been putting this post off.

Most of you know I've been in hospital for 4 weeks so far and though I've gone into great detail about the patient care and various other aspects of NHS life, I've stayed intentionally quiet about what's going on with me.

I'm afraid the news isn't good. In fact news doesn't get much worse for a bowel disease patient. My sulky bowel has finally given up the ghost almost entirely. The metre or so left has gathered in a clumpy mess, never to be prised apart. If they tried, I would almost certainly perforate in several places, leading to sepsis and even death. The surgeon just wouldn't be able to guarantee he'd spot all the leaks. Bits that should squeeze have gone to sleep and bits that should sleep try to squeeze. Some bits are all narrow and impenetrable, others all distended with the pressure of blockages.

If I wasn't experiencing symptoms, they may have just left it to it's clumpy recalcitrance, but as I'm pretty much in permanent writhe mode, and have qualified to represent GB in the vomit Olympics, it's just going to have to go. Next Tuesday.

Normally, they'd cut the chunk out and join up the ends, but, well, I've run out of ends. There won't be anything much left to join TO. What's left of my colon isn't in bad shape which is something, but the slightly more crucial ileum will be no more.

So, that means a permanent stoma and being fed into my vein for the rest of my life. My medics seem to think there is an outside chance that enough ileum will be left to reverse the stoma at some point, but my surgeon was less optimistic, and let's face it, he's the guy with the scalpel. My medics also hope that the IV feed (TPN or Total Parenteral Nutrition - we might as well all start getting used to the term) may not have to be permanent or at least, I may get away with a few hours at night or even every other night.

I can imagine it's hard to believe that I've met this news fairly calmly. I have this feeling most of you reading this will be much more upset for me than I am for myself. But to be honest, the pain had become so constant and intolerable and the vomiting so grueling, I'd probably offer an arm too if they told me it might make it stop. It's not like I haven't lived with the knowledge for years that a stoma would be on the cards at some point, and I've known for a long time that the next chunk to go would probably tip me into "not viable," that cold term I'd tried for so many years not to ask about.

So don't cry for me lovely reader, the truth is I'll soon be freer.

This might give me a chance to get rid of all the pain - with a bit of luck and a following wind, maybe even for a long time. It should stop the vomiting and I certainly should be able to put on weight at long last with the IV nutrition - that might mean I even get a chance to get stronger.

A chance to climb trees again with my boys, play frisbee in the park, climb to holiday adventures on sunny mediterranean hilltops.

And if all of that doesn't cheer you up, if I've managed to make Ian Duncan-Smith's life this miserable at death's door, just imagine what I can do with a new lease of life.

Don't Worry Your Pretty Little Head

OK, this really has to stop.

I've written countless articles about the failure of doctors to listen to their patients. Whether that failure comes from judgement (they're "just" an addict, they're "just" depressed, they're "just" malingering) or from arrogance (I know best, what would they know, I have the medical degree) I honestly believe it is the single most dangerous factor in our healthcare system.

But the frequency of it astonishes me. I mean, it would be understandable if the odd doctor, leaning on his extensive medical training, concluded that he really did know more than the patient, but for it to be seemingly a matter of course is totally unacceptable. It's so common, I'm not actually sure many doctors ever simply accept what their patients are telling them at face value.

Where did this assumption spring from? What led such a vast number of doctors to conclude that, on the whole, patients are hypochondriacs, malingerers, stupid or deluded? It seems totally unfathomable. Are we really all so frustrating and misguided? Does experience really lead so many to conclude that listening to what their patients are telling them will only waste their time? And when so very many times under the current model this DOES lead to errors - errors that could have been avoided by listening - what on earth is stopping them from learning the lesson?

This in-patient stay, I've got to know quite a few patients. I've been here 4 weeks and I love listening to people's stories, so inevitably, I've heard quite a few by now. I was so concerned by how many people were telling me they knew what was wrong with them all along, but their doctor or surgeon thought they knew better, that I started actually asking people if they believed being ignored had worsened their situations or even brought them here.

Almost unanimously, every single one said it had happened to them.

The girl who had been vomiting constantly for 9 MONTHS since her bariatric surgery, totally convinced that something had gone wrong with her surgery, but assured that couldn't be the case. Her doctors and surgeons assured her she had simply developed a psychiatric aversion to food due to her terror of regaining weight. They were so convinced, they had only checked her stomach but had done no other investigations whatsoever on other parts of her bowel. When they finally humoured her and had a look inside, her stomach was so twisted, they described it as a "corkscrew". She had two narrowings in her oesophagus, which also "showed signs of erosion" The new Dr she fled to said he was "surprised she'd been left in that state for so long."

The woman who assured them for months her recent surgery had gone wrong only to be told for 5 MONTHS that it was simply the healing process. When they finally opened her up, they had left 12 metal clips inside her. A simple x-ray would have confirmed it, but again, her Drs were so convinced they knew best, even that wasn't ordered.

The young girl with Crohn's who told them her stoma needed resiting due to fistulas. They ignored her and did a different operation, only for her to be back here now needing - you guessed it - her stoma resiting due to fistulas. 2 operations where she only needed one, 30 or so bed nights more than necessary.

The friend in my bay who repeatedly told Drs her endometriosis was bad but couldn't even get a promised appointment. Now, her bladder, kidney and bowels are seriously damaged, leaving her with no fewer than THREE various stomas. She will have no fewer than THREE avoidable operations since because not one, but various doctors didn't listen.

I'll go on : The old lady complaining that her "back hurt" told for 3 weeks it was just a symptom of her infection. Until they found the serious spine fracture she'd been tolerating so stoically for so long.

The woman with a cyst, complaining of severe pain, told over and over it was fine for more than a year. I'm unclear of the exact details with this lady as her story of being disbelieved is so complicated, appearing to go back over 20 years, that even I struggle to follow it. The latest saga saw her told "cysts aren't that painful" for over a year, despite the pain etched on every inch of her face. Until they found it was nearly 10cms, causing damage to her kidney and wrapped around her bowel. If she hadn't fought so very hard, she'd have lost the kidney completely. She's exhausted.

And of course me, told for the last 2 years I couldn't possibly have blockages in my bowel because my "MRI was clear." Me telling them over and over that MRIs had never been very reliable with me, them refusing to simply confirm it from my old notes. They could have settled the difference of opinion with one phone call to my old consultant. The good old fashioned "conversation" method. Now it seems that part of my bowel is in such a mess it needs to be removed completely.


Not only is this failure to listen clearly extremely dangerous, but it costs the NHS vast sums of money. Patients get sicker than they should and are left to get to the point where remedial action is more serious, more costly and more intrusive. Patients spend much longer in a hospital bed than they would have if the problem had been identified and treated from the start.

This waste of bed nights is so farcical you'd never believe it. I had been here 23 DAYS before I got the nutrition I told them I needed from the start and in that time I'd had nothing more than 2 investigations that I could have had as an out patient. But admission is the only way to guarantee I'd get them before I die of old age. As for getting urgent surgery as an out-patient, that's right up there in rarity with sparkly unicorns and toothsome hens.

The only other reason I'm here is for adequate pain relief, which I could also do myself at home, but because doctors don't believe high level, acute opiate use can ever be anything but deviance, it must be overseen 24 hourly by professionals. The only way to guarantee that the pain is controlled once it reaches a certain point, is to stay in hospital. The exhausting misery of not-being-believed as you run the gauntlet of large repeat opiate prescriptions is just too traumatic. There are just so many stages of people not to believe you. Receptionists, pharmacists, Drs, locums, out of hours doctors....I promise you, several thousand chronically ill people are reading this and screaming "THIS!! SO THIS!!"

A GP who refuses to listen to the mother who repeatedly insists her child "just isn't himself" may have to see that same patient over and over and over again, wasting countless appointments until the child either reaches some kind of crisis point or is finally correctly diagnosed. After all that, so often, just one appointment would have done. If the delay means the child will then need ongoing treatment that may have been avoided, yet more or the doctor's time and the taxpayer's money is wasted.

Not only is it costly and dangerous, but it isn't even logical. Concluding so often that parent's have the  strikingly rare Munchausen-by-Proxy just isn't at all likely. Concluding that a patient who has barely crossed his doorstep in a decade is just a hypochondriac is counter-intuitive. Concluding that a patient with a pre-existing, long diagnosed condition can never be suffering from anything else makes no sense.

Even if all you care about in life is money, then this enormous, incomprehensible waste must at least be enough to convince you this can't go on.

My many, many, years of healthcare experience - not just here but in other European countries - has led me to believe that the UK uniquely, has an extremely bizarre approach to patient care. Other countries trust you to keep your own notes, send patient's for immediate investigations when they complain credibly of new symptoms and treat conditions as swiftly and as accurately as they can. Why don't we? Why is there still this paternalistic barrier to care here? This assumption that doctor always knows best and patients will always set out to mislead or "worry themselves over nothing"? It just makes no sense. Why do so many of our healthcare professionals seem to act as gatekeepers to care, rather than gateways?

If I were Prime Minister, I would order an immediate trial, effective immediately. I would insist that for one month, every doctor, surgeon and consultant in the country took their patients at face value. I'm almost certain the results would be astonishing and the reduction in burdens on the NHS would be significant.

Perhaps most importantly of all, we would avoid untold mental distress and even damage if we stopped treating patients as people who must be patronised, fobbed off and ignored.

Monday, 29 September 2014

Hospital Logic Part 3 : Obs

1. Wake up your patients very early to take their blood pressure, their temperature and to measure their heart rate. This should never be later than 6am

2. Do not take any notice of previous readings. Pretend this is the first morning you've woken them, not the 27th (In my case. God that's depressing, I wish I hadn't actually counted.)

3. When already low blood pressure reads a smidgen lower - due to the patient's extremely recent sleepy status - panic. Remember it is your duty to report this as though it is an unusual event. Even though it's the 27th time it's happened. And clearly caused by the fact that until 23 seconds ago, the patient was happily dreaming.

4. Repeat blood pressure reading every 15 minutes, every morning, until blood pressure rises. A smidgen, obviously.

5. Only once you are sure there is no chance at all of the patient going back to sleep should you look at previous readings and conclude. "Her blood pressure IS usually very low." As the patient has been assuring you for the last 45 fraught minutes.

6. Remember, if the patient should become in any way frustrated or cross about this and is unable to hide this irritation due to their extremely recent sleepy status, point out that it is for their "own good." In most cases, this will make the patient compliant, however, if they remain upset, you MUST make sure you mark "patient aggressive" in their notes.

7. Repeat daily.

NB : Should patients with low blood pressure suddenly show "normal" readings, you must NEVER take into account that for that particular patient, this means they are around 50% higher than usual. Even when patient is actually having a stroke, NEVER listen to them, simply reassure them their obs are "fine."

Friday, 26 September 2014

Things That Are Disposable

How often do we hear of waste within the NHS? Barely a week goes by where some distant politician doesn't remind us how very inefficient our health service is. In fact, it isn't and the latest international survey found that it was actually the 2nd most efficient health service in the developed world. We spend just 9.2% of our GDP on healthcare, whilst the average in other countries is 11-12% (WHO)

But I don't think I've EVER heard anyone ask a patient about waste. Can you ever remember seeing a panel debate on Sky, BBC, ITV or C4 news discussing healthcare that included an actual patient? Someone who uses the system and sees a different perspective? God forbid we should ask the people who actually have to use the system, what would they know?

Well, actually we know a lot. We see the medicines opened for just one dose, then thrown away. We see the extortionately expensive £1,000 bags of liquid feed thrown away because no-one thought to put them in the fridge, rendering them useless.

Recently, I watched a Netflix documentary about a brilliant brain surgeon who went to give a lecture in Kiev back in the 80s. He was so appalled at the lack of specialism and facilities, that every year since, he has returned to Kiev and carried out as many of the most complicated cases of brain surgery he can fit in.

He crams his suitcases with equipment and devices that just aren't available to ordinary people in Kiev, equipment that we would use once and throw away. He risks the wrath of the Russian authorities with every case he takes on. One mistake and he felt there was little doubt he'd go to jail. The doctor he works with in Kiev has already been suspended twice for helping him.

But there was a moment, when the doctor from Kiev showed the drill he used to get through skulls. It was an ordinary Bosch hardware drill and he explained that the drill bit was one the UK doctor had bought over TEN years ago and he'd been using it ever since. The UK doctor estimated that just on those drill bits alone, each one used once and then discarded, his hospital spent £40,000. That's one instrument of very many used by one surgeons every day, up and down the country.

A few days ago, I finally had the line fitted into my vein that they would feed me through. It is done in theatres under strict sterile conditions. The Dr inserting it mentioned that the scissors he was using were "one-use". They appeared to be very sturdy, stainless steel scissors, very similar to the ones you can buy for home haircutting. Even in the stores, these are expensive, around £12-£20. Anything bought through the NHS - perversely for an organisation with such huge procurement power - seems to cost 3 times more than the high street equivalent.

So why do we do this? Surely things like scissors and drill bits and scalpels can be effectively sterilised to use again? Sure, we don't want surgeons using blunt scissors or drill bits but one-use???

We do it, because at some point, a very serious condition has been found to be transferred by re-using anything used in a sterile environment. The results may have been statistically imperceptible, perhaps just 2 or 3 cases in a million, but because of that, every last implement must be disposable. So, for instance, we might make sure that every single surgical pack used is thrown away after use, just because 2 people were infected with CJD ("mad cow's disease") at the peak of the public interest over it. Even if we can be totally sure that whatever bacteria or virus causing a certain condition is killed under sterile cleaning, the chance that somehow just one scalpel or pair of scissors misses the bleach-bath means that we waste another few billion per year.

Ethically, this might be a difficult question, but as a nation, are we prepared to accept risks many, many times smaller than, say, being hit by lightening twice or winning the lottery, to save many billions of our tax money from literally, being thrown away? And if that minuscule risk means that we take much, much smaller risks with lives in other areas by providing a better funded service to every member of the public rather than legislating for the exception rather than the rule, might the public choose to accept it?

Perhaps this isn't something the NHS or it's staff should decide. Perhaps we should have a public debate and allow everyone to have a say?

NHS managers are making difficult decisions every day as they try to cut vast sums from their budgets without affecting patient care. Perhaps very expensive cancer drugs that can only extend life rather than save it become unavailable, or patients are discharged to soon. If this measure could save many billions of pounds every year, should we not at least consider it?

Wednesday, 24 September 2014

Hospital Logic Part 2 : Smoking

1. Ban smoking from all buildings. Because it's bad for you.

2. Ban smoking outside the hospital or anywhere in the grounds. Because it's bad for you.

3. Assue they will give up smoking during one of the most stressful times of their life.

4. Ensure already weak patients with dubious immunity have to walk as far as possible, leave the safety of the security staff and are exposed to all weathers and germ-ridden public. Because clearly, that is much better for them.

Tuesday, 23 September 2014

A Well Run Hospital

From my recent posts and tweets, it's clear some of you are beginning to think I'm staying in a hospital from a Carry-On film without the wit.

However, there are a thousand different clues that tell you whether a hospital is well run or not and I truly do think this one IS well run. For all the faults and mistakes, I'm still convinced they are due to under-funding and under-staffing, not incompetence.

A patient-centered hospital listens to the little things and improves them. Each time you are admitted you notice details that used to frustrate you have been dealt with. I used to wait endlessly for the ward door to be unlocked when I went downstairs for a cigarette. Sometimes I honestly began to worry that I'd have to sleep outside in the corridor. This stay, it is always answered within 6 rings of the entry phone.

There are 2 large TV screens in the foyer. One announces "You told us..... (insert complaint) The other explains what they did to put the problem right.

Last stay, I used to feel quite intimidated if I had to take a lift with a male night worker on my own. Now, unless it's just coincidence, they step out if there's no-one else around.

I used to find some of the guys on the security desk a bit rude. Again, if I wanted to go out for a cigarette at night, I would have to press a button for them to release the door. Sometimes they just wouldn't bother and I'd wait outside indefinitely, although I could clearly see them sitting at the desk. One of them had a little power trip and wouldn't let me go out of the back door to the relative privacy of the taxi rank, but insisted I brave the onslaught of the very main road at the front of the hospital, always busy with passing drunks around about midnight. That has all stopped too. They no longer question me on who I am or where I'm going, which seems reasonable, as I always imagined with frustration that the pyjamas, wild hair and drip stands kind of gave my patient identity away.

Pain relief is an absolute priority here, unlike my old hospital. No matter how busy they are, I rarely wait for more than 15 minutes and it takes nearly that long to find another trained member of staff, find the keys to the controlled drug cupboard and draw it up.

If all goes wrong, the ward sisters (on the whole, apart from my unfortunate experience) are there to be patient advocates and I've often heard them tearing into pharmacy or an unfortunately hapless doctor on our behalf.

I suppose the point of writing this post is to say that if things are so bad for me here at a renowned teaching hospital with a very healthy focus on patient care and improvement, things will almost certainly be worse in most local hospitals around the country. In my experience, this kind of focus on patient care is quite rare. I have refused point blank to go to my local hospital for many, many, years now and have made 2 or 3 hour journeys vomiting all the way, just to avoid putting myself at their mercy.

I think it's too easy to blame poor management or lazy staff. If the staff don't appear lazy, they can't be. If the hospital seems well managed, it probably is.

But the NHS has been ordered to save £20 billion over the course of this parliament. Most people don't stop to think about how much money that actually is. It's 20 THOUSAND MILLION POUNDS!! There are only so many biscuits you can cut back on on the tea round. The NHS has never been adequately financed in the 25 years I've been an in-patient. The only time I've been on a fully staffed ward was in 2007 after 10 years of extra Blair money. It runs to the absolute bone. 20 thousand million pounds will affect care and outcomes, there's no way at all anyone can argue that it won't.

Monday, 22 September 2014

Hospital Logic Part 1

I think I'll make this a series. If you pointed every logic-fail out to the nurses, you'd be talking forever.

So to kick off, Patient Rest Time :

1) Enforce a patient rest time between 1pm and 3pm. Switch off all the lights and close all of the blinds there and then. Even if everyone in the bay asks for them to be left open, do not allow this. Use whatever means necessary to assert your authority.

2) Once you're sure it's completely dark, deliver lunch.

3) Make sure that staff do not modify their behavior in any way and that all 20-30 are having to shout at once to hear one another in the corridor. In fact, this is also a good time to hash over last night's tequila related incidents.

4) Schedule all blood tests, physio sessions and dietitians between 1pm and 3pm

5) Remove lunch uneaten from those who actually managed to sleep through the cacophony.