It has taken me a while to get around to writing this. To start with, I liked many of the nurses and Health Care Assistants (HCAs) on the ward, they were understaffed and trying to manage 16 barely mobile post-op orthopaedic patients. I liked my surgeon and his team. They did a good job on my back and the sciatica has all gone (though I was warned that it could come back if the L4/L5 disc gets worse again). But the ward team fucked up badly at the start and I was put through avoidable extra pain because of it. So, to begin the story:
In early-mid June 2012 I was admitted to hospital for spinal surgery (microdiscectomy at L4/L5 & bone fusion at L5/S1) to try to solve my long-term severe bilateral sciatica from two ruptured discs. I also suffer from Fibromyalgia (along with other health problems) and am on a regular medication regimen that I & my GP have worked out over the years. It works for me and stops me lying in bed, sobbing in pain, for most of each day.
The first indication of a problem was when I arrived and they had the wrong name for me on the whiteboard – I have two “middle” names, they had picked the second of my middle names and my surname. Then they discovered that the various folders for me also all had different names. Each of three folders (all necessary, apparently) had a different “first” name selected from my full name. It is a good thing that though my surname is not unusual, none of my given names have been common for the last few generations.
The next issue did not become apparent until later but started at this point… My husband had created and printed out 4 (four) copies of a timetable for my medication needs (I take something every two hours from 7am until 11pm – missing a single dose will cause my pain levels to increase, missing more feels like an exponential increase in pain & fatigue levels). I also had a carrier bag with a week’s worth of medication in it (a two-week supply fills about 1/3 of a large airline cabin bag). I handed these to the HCA who was checking me in and was pretty much ignored while I was trying to explain about the timetables and my medication.
I went into theatre at around 9am & had a 5-6 hour operation during which I was positioned on my front, with thighs raised on pillows so that they and my shoulders took my entire weight (to keep my abdomen from putting upward pressure on my spine). In recovery, I spoke to someone and said I needed my regular medication (and told them what I was due to have then) so that I could manage the pain properly. I was given a single capsule of one of the three medications that I was due at that time of the day and told I could have the rest when I went back to the ward where my medications were.
But I got no further medication when I got to the ward. Despite repeatedly asking for it and telling them they had my timetable the response was continually parroted “you were only written up for one X and you’ve had that. You can’t have any more until the doctor says you can! ” Added to “we only dispense every 4 hours” and “a doctor will see you tomorrow to determine your needs”. Oh, and they had no knowledge of my timetables. I cried and moaned constantly with pain and was told to “calm down”. I begged for painkillers. I was refused. At this point I was not only in pain from the surgery site, but the Fibromyalgia had gone into full-on flare-up mode with the added bonus of a migraine AND my thighs, which had been “dead” & numb from the pressure of my weight on them for so long, started to get seriously painful pins and needles (sounds trivial, but it felt like my skin was both being flayed and burned off from the inside, that particular pain continued for over a month). By this time it was around 2am, I think, and I could no longer handle the pain in any way, shape or form so started screaming uncontrollably. I was pretty incoherent by this point. The nursing assistant’s “calm down”s started to be appended with “the anaesthetist is coming”.
Shortly afterwards a doctor (the anaesthetist) was brought to me to have a “chat” – she gave me morphine. As the morphine knocked the pain down a notch or two I was able to point out that my GP had already “written me up” for the essential medications to manage my conditions, that being what a prescription was for, but that I could not possibly manage them if the hospital was so idiotic as to ignore that. I also pointed out that MY regimen was 2 hourly, not 4, and the hospital insisting on 4 would mean that I would be in severe pain for the latter two hours of each period. At this point they “found” the timetables we had provided (one was even in the locked cupboard by my bed with my medication). I showed her the app on my phone that tracks my medication, sets off an alarm and reminds me what to take at the appropriate times. I explained again that I have been managing my condition this way for a few years now. She thought about it and asked if I would be able to cope better if I had “control” of my medications. Oh, hells, YES! Finally a note was written for the nurses that “the patient will manage her own medications & notify a nurse what she is to take & when. ” I was also put on a self-administering morphine pump (badly inserted catheter meant a moderate level of pain started to build in that arm if I didn’t keep my forearm raised vertically & eventually the fluid was leaking into flesh & causing swelling so it was removed after 2-3 days) & regularly offered oramorph during the night when I could not sleep (night-time being a period when I do not schedule medications for myself as I expect to be lying down and doing nothing to increase pain levels) – I had to stop using oramorph after a couple of days as it was clear they were triggering migraines. My husband bought in my refillable icepack & Imigran as the hospital had nothing suitable.
I have to say that once I was given control over my medications again, things improved rapidly. But taking note of a pre-existing illness, especially FMS that has such a huge effect on how your body handles additional trauma and pain, should be a vital part of post-op nursing care. Refusing to provide a patient with their prescribed medication because they didn’t bother to check it or to pass the timetable to someone with the authority to re-approve its use within the sovereign grounds of the hospital is simply inexcusable. If a patient has to start screaming with pain to get it taken seriously they have failed in their jobs.
I have been suffering severe & chronic depression that has worsened since the surgery & the physical recovery is still ongoing. I should probably have registered a formal complaint at the time but I was just glad to get out (and then spent several weeks with even more limited mobility than usual and lots of pain that sort of knock such ideas out of your head). My surgeon and his team were, for the most part, excellent – I can’t fault them for something that the nursing staff should have been dealing with.