Monday 18 November 2013

How national is the health service?

Over the last seventeen months, my cancer treatment has taken me to five different hospitals in the National Health Service (NHS), and I've been quite surprised by some of the things that vary from one hospital to the next, hence, in a change to my usual posts, I thought that it might be interesting to share some of my observations, as I'd imagine that the health service is not quite as national as most of you would expect.

It was probably about a year ago when I first noticed that there are variations between hospitals, as all of my prior treatment, right from the initial diagnosis in February 2009, had pretty much exclusively been at my local hospital in Cottingham; It was really only my PET-CT scans and hickman line insertions that had taken place at a different (also local) hospital in Hull, and that was purely down to those services not being available at the hospital in Cottingham. In other words, it was really only when I first visited a hospital in Leeds, and a month later started the process of switching my primary care to a hospital in Sheffield, that the variations between hospitals began to come to light.

The first difference that I noticed was that each of the hospitals had their own manual process for managing their clinics, i.e. keeping track of the patients etc, and that some were better than others when it came to things like informing the patients about their position in the queue. Given that I work in software development, it's likely of no great surprise that my thoughts turned to how these clinics could potentially benefit from some kind of computerised system, and I actually even created a quick demo of the kind of thing that I had in mind; I provided it to my local hospital in Cottingham as part of some feedback/suggestions that I sent them relating to my care over the years.

Note: There are a couple of screenshots of the demo below (click to view them full size), just in case you're curious what it looked like; The actual demo simulated the activity of a clinic, albeit sped-up, to give a better feel for how it would look/work. The idea was that what you can see in the screenshots would be on display in the waiting areas, so that everyone could see an overview of the clinic (screenshot on left) and patients could be alerted when a doctor was ready to see them (screenshot on right):

Clinic Overview
Patient Alert

Making better use of modern technology has actually become somewhat of a recurring theme in the feedback/suggestions that I've provided to the hospitals responsible for my care, as it seems there are quite a number of processes/systems in hospitals that involve the use of paper and whiteboards etc, when a computerised approach would offer benefits such as easy archiving and backing-up, not to mention the potential to access that information from any device connected to the hospital's network.

The access to information, both electronic or otherwise, is another area that highlights the variations between hospitals, and how processes/systems are often more local than national, as it seems that, instead of centralised computer systems, numerous adhoc/individual solutions are quite common place; Hence, communication between hospitals in shared care situations can quickly become complicated, leading to things slipping through the cracks, and the quality of patient care rapidly deteriorating. You may recollect that the hospital in Sheffield were sometimes reluctant to share my care with my local hospital in Cottingham, due to concerns around miscommunication, and that a radiologist in Sheffield was unable to review one of my CT scans properly, due to not having access to the prior CT and PET-CT scans I'd had at other hospitals.

Taking a more centralised approach, thereby making the most of the health service's national status, would seem to be a beneficial change in other areas too, as even the purchasing of equipment and medication would appear to be managed more locally than nationally, based on discussions that I've had with some of the staff, and what I've seen used in the different hospitals. For example, even things like the connectors that are attached to my hickman line vary from one hospital to the next, when you'd likely expect the same ones to be used nationally, if only to secure a good deal on the price; I'm not sure whether there are any significant differences between them, but I put together the following image to show the four types (around the edge) that I've seen, as well as to show the cap (in the centre) that the hospital in Sheffield recently trialled; The latter aimed to reduce the number of infections introduced via central lines.

Central Line Connectors

It's not just the brands/models of equipment that differs though, as occasionally what type is used does too. For example, with the exception of at my local hospital, my blood pressure has nearly always been measured using an automated machine, instead of manually with a stethoscope; My local hospital, after trialling the automated machines, came to the conclusion that the manual approach was better, as it was more accurate and gave the nurses control over how much pressure was applied to patients' arms, thereby enabling them to avoid bruising patients prone to such issues. Also, whilst my local hospital has always given me platelet transfusions without the use of an IV pump, apparently to avoid the platelets being crushed in the process, whenever I've had platelet transfusions in Sheffield an IV pump has always been used. In both instances, you'd likely expect a best practice to be agreed/used nationally.

Sometimes even the medication/treatment given varies between hospitals too. For example, the conditioning regimen that I would have been given for my Allogeneic Stem Cell Transplant (Allo-SCT) would have been different had I gone to the hospital in Leeds, instead of Sheffield. Whether one is any better than the other, in that particular instance at least, is probably not really known, due to insufficient evidence, but nevertheless you might expect to be treated the same throughout the NHS.

Note: Anthony Nolan, a charity that runs one of the UK's bone marrow registers, are currently trying to raise awareness of how post Allo-SCT care varies around the country, as can be seen in their associated news article and web page; One such variation being only some make use of ECP to treat GVHD. Incidentally, should you take a look at the report, the patient story on page thirty-four will likely sound familiar.

Putting aside the more clinical differences, it soon became apparent that the facilities being offered vary too. For example, TV, phone and/or Internet services aren't always available, and whilst in some places they are provided for free, in others the prices are extortionate. Also, whilst it's perhaps understandable that the price of parking ranges from free upwards, it seems odd that the factors that influence that, such as the type of treatment you are having, whether you have a disabled badge, and where you park, varies between hospitals. For both, you'd likely hope it was the same nationally.

Finally, there are a couple of other differences that stood-out too. The first, which in some ways probably surprised me the most, is that even the uniforms are different between hospitals. For example, in Sheffield the uniform worn by a qualified male nurse looks very similar to that worn at my local hospital by a student nurse - As you might imagine, that caused me some confusion initially, when nurses seemed to be doing jobs for which they weren't qualified. The second, which has at least on occasion provided a source of amusement, is that the catering differs too. For example, not only do the daily menus vary, but some hospitals out-source the catering whilst others do it themselves. If you are wondering what exactly is amusing about the catering, hopefully a couple of my recent orders will help to clear all of that up:

  • At my local hospital, when the breakfast trolley came around, I asked for Branflakes, only to find out that they had recently been removed from the menu. When I asked why, it turned-out that the reason was that patients often thought that Branflakes were the healthy option, when in reality they are sugar-coated. However, I could still order Frosties. I actually ordered some Cornflakes though, and proceeded to bury them in a tonne of sugar!

  • At the hospital in Sheffield, I recently ordered "Strawberry Jelly Rip" for my dessert, as that was the first time that I'd seen that on the menu, and I was curious what exactly would turn up. As you will no doubt appreciate from the photo below, there's a reason why it's not offered in chocolate flavour!

    Strawberry Jelly Rip

Friday 1 November 2013

The joys of being immuno-suppressed!

As you may have guessed from my previous post, things didn't exactly go smoothly between my third and fourth ECP treatments. In fact, it was actually the night before starting my third ECP treatment when I first noticed that I might have picked-up some kind of infection, as when I woke-up in the early hours of the morning I had a run-of-the-mill sore throat. I assumed that it would gradually fade away as the day went on, as sore throats tend to do, but, even though it did seem to ease a little at first, by the next morning it had definitely got worse - I had appointments at the usual Rotherham and Sheffield hospitals that morning though, hence I knew that I could get it sorted.

When is a sore throat not just a sore throat?

As luck would have it, in Rotherham, the second day of the ECP treatment tends to be when one of the doctors checks on your progress, hence it wasn't long after I arrived there that I had the opportunity to mention my sore throat. I had hoped that the doctor might offer me some pain relief, as my throat was quite sore, but I failed to explain just how much so, and I looked fine, so the doctor likely assumed that it was only minor, which is understandable really, and consequently never prescribed me anything.

As the morning went on, my throat continued to get worse, and I began to feel worse too, hence I asked one of the nurses if I could get something to soothe my throat. The nurse asked for a doctor to come and check me over, so that some pain relief could be prescribed, but after the doctor had asked me a few questions, and looked at my throat, someone more senior needed to be consulted to check whether I should really be given some antibiotics, due to my immune system being weak/suppressed.

It was probably a couple of hours later, just after the ECP treatment finished, when I was given a prescription for some antibiotics and cough medicine. One of the nurses was going to do some blood cultures and throat swabs too, but when I mentioned that I was on my way to the Sheffield hospital next, where they would be doing some blood tests, the plan changed to just doing everything at the Sheffield hospital instead, as that would minimise the number of nurses that needed to access my hickman line.

On my way to the Sheffield hospital, I picked-up my prescription, and had some of the cough medicine, in the hope that it would help to soothe my throat - It never made any difference though, and it wasn't much fun to swallow. I never took any of the oral antibiotics, because I expected to be admitted to the Sheffield hospital, where I'd be given IV antibiotics, as my symptoms had progressed from just a sore throat to also include: a high temperature (38.6°C), a high heart rate (140bpm), low blood pressure (80 over 50), and shivering. In other words, I looked and felt like death warmed up!

Shortly after arriving in Sheffield, one of the doctors came to see me, and sure enough I was admitted and started on Augmentin (antibiotic) and Paracetamol (analgesic and antipyretic), both via IV. The Augmentin was switched to Tazocin after a few doses though, because my recent history with C. Diff meant that Augmentin wasn't really advisable. Also, I was later prescribed Difflam (mouthwash) and Oxetacaine (local anaesthetic and antacid) to help with my sore throat, as it was still quite sore.

Note: If I was reading this, I'd likely be thinking: It was only a sore throat, why are you making all that fuss about it? Well, I've had sore throats in the past, some worse than others, but this was truly in a league of its own. I guess it goes to show that when people say something is painful, e.g. a sore throat, you never really know what they mean. I was asked, on a scale of one to ten, where ten is the worst pain imaginable, what would I rate it, and I said maybe six or seven - It is hard to say/decide though!

Passing the time in a shared room!

It was probably a couple of days before I mostly felt fine again, at which point I was more interested in a cure for boredom than anything else. My phone was pretty much my main source of entertainment really, as I used it to: listen to music, try to beat my high scores on solitaire and sudoku, and occasionally, after wandering down the corridor to the edge of the ward, where I could just pick-up a weak signal, check my email etc. Fortunately, I was in a room with four beds, hence talking to the other patients (if they were in the mood) and the staff (as they popped in and out) helped to pass the time too. That actually reminds me of a few stories that amused me:

  • One patient, who spent most of his time reading Jack & Jill by James Patterson, had by sheer coincidence positioned his bedside lamp such that, as I looked out of the window from my bed, the reflection that I could see in the window made it look like he was wearing his lamp as a hat! (That often made me smile, as it was very much against his character.)

  • Another patient, who designed lighting for a living, was using FaceTime (Apple's video chat app) to talk to his family one evening, but the webcam in his iPad was obviously struggling to capture a decent picture, hence he decided to put his bedside lamp on to see whether that helped, but in a perfect case of irony he couldn't work out how to turn it on! (To be fair, the bedside lamp did have three separate switches that all needed to be in the on position for the light to come on, hence it was poorly designed really; You had to guess which switch the last person used to turn it off.)

  • One night, all four of the beds were occupied, but only one patient was managing to get any sleep, as his snoring was that loud it was almost beyond belief. I'm pretty sure that the reason an empty medicine pot fell off my bedside table (for no apparent reason) that night was actually down to the vibrations from that guy snoring! I actually layed there thinking about that very idea, and was reminded of the well-known scene in Jurassic Park where you could see the ripples in a glass of water as the T-rex was gradually getting closer. In fact, if, by some miracle of modern science, we could bring back the biggest T-rex you could possibly ever imagine, even its loudest ROAR would have been easily out-classed by this guy snoring!

As those stories likely demonstrate, I clearly wasn't living the high life, but I must admit that the view from the room was most impressive. The first two photos below show the day and night view of one particular area of Sheffield, as seen when looking out of one of the windows, and they do give an idea of what it was like, but don't quite do it justice. The last photo below shows my attempt at capturing a kind of wide angle night view, as seen when looking out of the six adjacent windows, but unfortunately it fails to even compare to seeing it yourself! (Click on the photos to view them full size.)

Sheffield - Day View
Sheffield - Night View

Sheffield - Wide Angle - Night View

Making my escape!

Once you start feeling better, it doesn't take long before you're thinking, can I go home now? Unfortunately, I've often found that I have to stay for the full course of antibiotics, which tends to be about five to seven days. There's also the issue of waiting for the blood culture and throat swab results to come back, which tends to take a couple of days for the preliminary results, and potentially a few days longer for the final results.

Note: The idea is that the test results help the doctors decide whether to prescribe a different antibiotic, i.e. one that is known to be more effective for fighting whatever infection was found. However, I've always felt fine by the time that the results come back, so they've always seemed a bit academic, even if my antibiotic was changed.

One thing that I did find out quite quickly though was that I was neutropenic, which meant that I needed G-CSF injections (in the stomach) to boost my immune system. It only took a few days on those before my neutrophil count went from being well below the norm to being well above it, hence that was sorted quickly/easily enough. However, I was finding myself feeling a bit out-of-breath on light activity, hence one of the doctors requested that I had a CT scan of my chest, just to see whether it shed any light on the issue. At the same time, another chimerism blood test was requested too. (The doctor was also interested in seeing the results for my latest lung function test.)

As it turned-out, everything seemed to wrap-up on the 15th of October (day +257), as I finished the course of antibiotics, the final results for my blood cultures and throat swabs were back, a blood sample had been taken to test my chimerism, and I had the CT scan of my chest. The blood cultures and throat swabs had failed to find anything, and a quick look over the CT scan showed that my chest was infection free; The chimerism blood test results wouldn't be available for a couple of weeks, hence they would be reviewed at a later date. That meant with a bit of nagging, I managed to see one of the doctors, who asked me whether I'd like to go home. Needless to say, I quickly packed my belongings, before someone found a reason for me to stay!

It was all going so well...

A few days later, I woke-up to find both of my big toes were swollen and throbbing, one much more so than the other, and my temperature was high (39.1°C), hence after a few phone calls I soon found myself being admitted to my local hospital with what was probably another infection. It seemed likely that my ingrowing toenails, which had been gradually getting better, had provided an easy entry point for some infection or other, and my immune system being weak/suppressed was allowing it to cause problems.

By the time that I'd stumbled my way into hospital, with my bare feet half-slipped into my trainers in a somewhat unsuccessful attempt to avoid making them hurt more, my symptoms were pretty much the same as a week or so ago, only the pain was in my big toes instead of my throat this time, and not quite so bad (more like a five or six).

Before being started on antibiotics and pain relief etc, I went through the all too familiar routine of: having blood cultures/tests done; getting my blood pressure, temperature, heart rate and oxygen saturation checked; and describing my symptoms (as well as my recent medical history) to a doctor. Once that was out of the way, I just had to wait for a room to be ready in one of the wards in the hematology and oncology centre.

Once I was settled in my room, I needed to make the few metre walk from my bed to the ensuite, as the fluids that I was being given to hydrate me were already wanting to make their way out. I only just made it to the toilet (and sat down) before starting to feel really light-headed, and on my way back I pretty much collapsed on to my bed, as my vision was starting to go. Fortunately, when on fluids, hospitals like to monitor how much is going in and out, to make sure that the two don't get too far out of balance, hence that meant one of the nurses later brought me a measuring jug, which I kept near my bed initially to save me from almost passing-out each time I had to go!

Note: For some reason, my local hospital seemed to be somewhat more cautious about what room I stayed in, as they wanted me to be in a negative pressure room by myself; The idea behind a negative pressure room being that when you open the door, the air rushes in, thereby preventing anything contagious from getting out. It seemed like a sensible idea in principle, but given how often my door was left open, I couldn't help but wonder whether it really just sucked any nearby infections into my room!

Back to killing time!

I responded quickly to the antibiotics and pain relief etc, as within a few hours I felt much better, but it was four days later before I was eventually discharged with a seven day course of oral antibiotics (Flucloxacillin). That once again meant that my phone was my main source of entertainment for a while - I'll soon be a sudoku grandmaster. I struggled to get any kind of signal in that room though, and I wasn't supposed to leave it, hence that meant no Internet access, until my laptop was brought-in; There is a very restricted wired Internet connection, which is really intended for staff, but it lets you access a few websites! (I essentially used it to check my email and that was it.)

Note: The blood cultures failed to find any infection, but one of the doctors explained that with patients such as myself, i.e. those with weak/suppressed immune systems, it's not all that surprising really, as it doesn't take much to cause a problem, hence whatever infection was present can be insufficient to be detected. The blood tests did show that I was neutropenic again though, hence I ended-up back on the G-CSF injections (in the stomach) until my neutrophil count had fully recovered.

My local hospital did provide another source of entertainment though, even if it wasn't exactly intentional, as I used the whiteboard in my room to draw a couple of cartoon characters, and that killed a bit of time one evening. It actually ended-up killing more time than I first imagined though, as that resulted in one of the nurses bringing me some paper, and almost instructing me to draw some more! The most popular seemed to be a drawing of Tweety Pie, which you can see in the photo below:

Tweety Pie

The waiting is over!

I was actually discharged on the 22nd of October (day +264), just in time to start my fourth ECP treatment the next day, with the plan of following things up with the team in Sheffield on the 29th of October (day +271) when having my monthly check-up and dose of Pentamidine. Fortunately, that all went to plan, and other than the doctor recommending that I made an appointment with my local health centre to get the ingrowing toenails checked-out, which is now arranged for the 5th of November (day +278), a couple of comments about my recent CT scan and lung function test looking fine was pretty much all that was said. My pulse still being a bit high (about 100bpm at rest), and it likely being related to me finding myself a bit out-of-breath on light activity, was mentioned too, but the hope is that will sort itself out, given a bit more time.