I’m recovering well from the surgery. That’s the main thing, the most important thing. It would be nice if I was also full of a warm fuzzy glow because of the kindness and care of the staff at the Heart Hospital. Sadly, that’s not the case.
It’s taken me a long time to write this. I’ve been home for 10 days, it’s a fortnight since the operation, and I’m still wondering whether I should say publicly some of the things that happened, or just let it go. The truth is, most people coming out of hospital put the horrible things that have happened behind them and move on, and I understand why they do. But as a result, the situation doesn’t improve. The UCLH values are “safety, kindness, teamwork and improving” and my reflections on my care are germane to each of those values. Also, I shared my side room with 2 other patients, both of whom were brought near to tears with frustration and fury at the way they were treated. Bear in mind this is the Heart Hospital: you would think that raising the blood pressure of patients would be contra-indicated. So I think I will publish, and see what happens.
None of the stuff that went wrong was complicated. It was all really basic nursing and surgical care, and organisational management. There is frankly, no excuse.
Most of the time, there seemed to be a plan of what should happen to me. It’s just that very few took personal responsibility for delivering the plan. Most staff seemed happy to put the burden of doing things onto anonymous colleagues – “someone will be along in a minute to sort that out” was a constant refrain, which I eventually translated as “yes I know it needs to be done, but it’s not my job to do it.” However I never got the impression that the staff actually talked to each other about what was required: there was just an unspoken hope that someone else would pick up the ball they’d dropped. With the result that much of the time, things were left undone until I kicked up. I should just say that the housekeeping/domestic staff were lovely: friendly, thoughtful, kind and willing to help.
I’m not going to bore everyone with all the little niggles of conflicting advice, poor communications, lack of follow through etc. Godfrey’s blog entry on the admissions process: Personal v. Professional, conveys beautifully the chaos at ward level within the hospital. Instead, I’m just going to comment on several processes which could have had a material impact on my recovery. The fact that they didn’t is because I’m young, fit, knew what should happen and was sometimes capable of pushing the system to make sure it did happen.
Other times, though, I wasn’t capable. I’d just had major surgery, was confused, and weak, and vulnerable. My emotions were all over the place, minor things took on major importance and I couldn’t still the voices in my head that made everything feel like life or death decisions. For most of my stay I had chest drains in which caused a lot of discomfort and meant that even small things like getting in and out of bed, or to and from the bathroom, were a major exercise. I really, really wanted other people to look after me. That’s what I thought the nurses were for. Maybe I’m just old fashioned.
I do want to say that I have no complaints at all with one of the nurses, Esther, who was unfailingly friendly, kind and competent.
Apologies for the length of this entry.
Drain Removal
During the surgery I had 3 drains implanted taking fluid from my chest into some plastic bottles. Initially, the fluid was pumped out, later it just drained by gravity. The drains caused some pain and a great deal of discomfort, affected my ability to breathe fully and severely limited my mobility. Clinically, drains should be removed as soon as possible after the fluid has stopped draining, both to improve the patient’s comfort and mobility, and to prevent infection tracking back along the tube into the body cavity.
On Friday 15th June, 2 days post-surgery, the surgical registrar assessed whether the drains were still required. At least, that’s what it seemed like: she didn’t actually tell me anything, but she stood at the foot of the bed and asked me to cough, and then told the junior medics hovering in a nervous pack nearby that what she was seeing was different to what she expected, given my notes. “Cough” she said to me. “See how the tubes are swinging” she said to them. She told the attendant nurse that the mediastinal drain could come out but that an X-ray was required before a decision could be made on the others. Off they went. Later one of the juniors, so shy he could barely make eye contact, came back and told me I’d be taken downstairs for an X-ray later that morning.
An hour or so later Esther explained the procedure for drain removal to me, practised the breathing exercise two or three times and with a colleague, cleanly and efficiently removed the mediastinal drain. “You’ll have an x-ray later” she confirmed “before we can decide on the others, but at least you can move around now.” And I could, I was able to get back and forth to the loo carrying the remaining 2 bottles, and shuffle around the ward corridors.
As for the X-ray, no-one came. After lunch I asked when the X-ray would take place. “They’ll send someone for you this afternoon” I was told. No-one came.
The next day, there was no medical round, but the shy junior medic appeared and looked vaguely in the general direction of the drains from the foot of my bed. “We’ll get those out today” he said. “Don’t you need an X-ray first?” I asked. “Someone will come for you later this morning” he replied. No-one came.
After lunch, I had a word with Esther. She and I both agreed that as there was no significant fluid draining out any more, the drains could probably go. I said that I thought not getting the X-ray was delaying their removal. About half an hour later, a porter arrived to take me to X-ray, and the drains were removed at about 4.30 Saturday afternoon, 72 hours after surgery. Having a chest drain removed is the weirdest sensation I have ever experienced, but immediately I felt so much better. I could breathe fully, the pain and discomfort had gone and my energy levels picked up instantly. I rang Godfrey who had gone home after visiting, and he could hear in my voice how much better I was. But the most significant thing was, I could get about more freely. Mobilisation is really important after chest surgery, and now at last I was able to mobilise.
I was only in hospital for 4 days, one in ITU and 3 on the ward. The time on the ward was all about wound healing and mobilisation. In that context, the fact that it took from Friday morning to Saturday afternoon to get the X-ray which was a precursor to removing the drains, seems pretty inefficient. As a result, the stab wounds for the drains had less than 24 hours to heal before I was discharged. It seems pretty basic to me, that where there’s a clinical and operational need to get the patient mobile, the requisite investigations should take place promptly.
Nebuliser
Early on the Friday morning, my first morning on the ward, a nurse fitted a nebuliser at the side of my bed, behind my line of vision. “Someone will come along later and show you how to use this” she told me. On Friday, I was not a well person. I was still confused, dozy, unable to concentrate and vast tracts of time would just disappear as I drifted in and out of consciousness. I completely forgot about the nebuliser.
On the Saturday I saw it out of the corner of my eye, and remembered the nurse fitting it. I assumed it wasn’t important, otherwise someone surely would have come back and explained it to me. Because I’m registered asthmatic although I haven’t used an inhaler for maybe 20 years, I thought an over-conscientious nurse had probably provided one for me.
At 7 a.m., the same nurse returned, fitted it and told me what to do. “Keep going for 10 – 15 minutes” she said “and I’ll come back and see how you’re doing.” I never saw her again. After about half an hour I took it off myself. I didn’t cough during or after using it, and no-one ever mentioned it again.
I don’t know whether a nebuliser is essential post-operatively, or not. If it is, it should have been explained to me and I should have been enabled to use it. Otherwise, it should have been discussed as a treatment option. Instead, what I got was a physical piece of kit that I couldn’t use (because I didn’t know how to, and in any case couldn’t physically get to it for the first day and a half until the drains were removed) and a shed-load of fear that I was going to die because I hadn’t used it.
Dressings
Sunday morning: the drains came out the previous afternoon and this was my first chance to have a shower. Exciting! I still had gauze dressings on the upper part of my sternum, and over the drain site. I asked a nurse what to do, and she said to shower first and she’d come back in 10 minutes or so to change the dressings. Off I went to the shower, enjoying my drain-free movements. Still, though, showering is hard work. Everything aches. Bending down is a slow, carefully executed process. Putting on pyjamas takes thought. With a genuine sense of pride, I managed a successful shower and returned to my chair, complete with wet wound dressings.
20 minutes later, the nurse hasn’t returned so I decided to take the initiative and call someone to change the dressings. I could have pressed the buzzer, but I was supposed to be mobilising, so I decided to walk round to the nurses’ station. There were 3 or 4 nurses there doing nothing so far as I can see, but that’s OK, they’ve got to be somewhere between finishing one thing and starting the next. So I explained I’d just showered, and asked whether someone could come and sort out my dressings. “Go back to your room, someone will be there in a minute.” 25 minutes later, no-one had come. Worryingly, the drain wounds had begun to itch.
I think about at least removing the old dressings myself. But then I think, what if something goes wrong? The drains only came out yesterday afternoon, what if removing the dressing means the wounds start to bleed? What if blood clots from deep in the wound are adhering to the dressing and I pull them out as I remove it? What if there are signs of infection? You do hear these scare stories. To be honest, I also think, I’m the patient here. I’m getting better, so I’m getting angry.
I went back to the nurses’ station. Different people there now, but still about 3 or 4 of them, still apparently doing nothing. “Could someone please come and change my dressings?” I asked “I had a shower about 45 minutes ago, the dressings are wet and the wounds are starting to itch.” One of them glanced at my sternal dressing. “You can remove that one yourself” she said, with what felt like contempt. “And the dressing on the drain wounds?” I asked “The drains only came out yesterday, I thought you might at least want to see how they are healing...” “Go back to your room, someone will be there in a minute.”
This time, someone did come, and the dressings were changed, and all was well. But it might not have been. Dry dressings which have got wet with unsterile shower water are a breeding ground for bacteria, and when the wound goes right through into the chest cavity, the complications can be serious. The nurses didn’t know what was under the drain dressing, whether the wound was healing or not, whether there were signs of infection or otherwise. And what is worse, they didn’t seem to care.
Wearing a Bra
When you are a middle-aged top-heavy woman, your boobs naturally fall downwards and outwards, pulling away from the midline. It’s neither comfortable nor dignified, so I wear a bra.
When you have a sternotomy, your breastbone is cut in two along its length. Closure is performed by wiring the two halves together, and the skin is then glued back together again. You really don’t want unfettered boobs in these circumstances.
In fact, the guidance leaflet from UCH "Information for patients following a Sternotomy” says:
For women, do ensure that you wear a well supportive and comfortable bra (i.e. a sports bra). This will prevent your breasts pulling at your sternal wound. You will need to wear this from the day after surgery.
I didn’t get this leaflet until the Friday afternoon, 2 days after surgery, but luckily before I went into hospital I had researched my likely condition post-surgery and ensured I had a range of cotton, front fastening bras with me so that I could be comfortable afterwards.
So I asked in ITU whether I could put my bra on, and they said yes, fine, was it in my washbag? No, it was in my overnight bag, which was in storage and wouldn’t be brought to me until I got onto a proper ward. Shame no-one had pointed this out to me in Admissions, but hey. Never mind.
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| A Pillow for Support |
When I got onto the ward I couldn’t get out of bed: the chest drains were attached to the suction tubes. Never mind, the attentive admitting nurse was very helpful. I asked whether I could put a bra on, and he said “No. I don’t see how you can wear a bra with those drains in.” I only had the vaguest idea where the drains were, I was confused and exhausted and accepted his word. So I spent all that night and the next morning bra-less, trying to support myself with a pillow.
On the Friday, when the suction was stopped and one of the drains removed, I was finally able to get out of bed, find my overnight bag and put on a bra. The drains weren’t in the way, not even close to the bra line. Instantly, propriety and comfort were restored.
The point about the bra, though, isn't just my comfort. It's that heavy breasts pulling against a new wound could conceivably tear that wound open. Hence the guidance says, not that you might want to wear one, but that you will need to wear one from the day after surgery. How come the ward nurse doesn't know this? After all, I was in the Heart Hospital. You’d think the staff would be used to managing women post-sternotomy.
Discharge Process
Late morning on Sunday, a junior medic I’d never seen before came in to the room, looked at my notes, and without examining me, said I could go home. I waited for him to say tomorrow, or in the next day or so, but he meant now. He was being premature actually, as the established protocol after drain-removal includes a radiograph to detect any new fluid or air collection. This hadn't been done.
This was the first time anyone had mentioned discharge. I was stunned. I had been told the stay would be 5-7 days and it had barely been 4 days; the poxy drains had been out for less than 24 hours and so far, I hadn’t even ventured off the ward to see how far I could walk. I didn’t know if I could make it to the hospital shop, let alone get myself across the concourse of Liverpool St Station, through all the crowds. I was handed a piece of paper and told to get myself to X-ray for the final scan.
Instantly the doctor mentioned discharge, the atmosphere in the ward changed. The nurses, not exactly friendly in the first place, became downright cold. It was made clear that from now on I was in the way, I had shifted from patient to bed-blocker.
I rang Godfrey, who was still at home, planning to come and visit that afternoon, and told him I was coming home. He was stunned. “You’re not ready” he said, and I agreed. Still, we all know about pressure on beds, so we accepted the inevitable. I went downstairs and had the X-ray done, and came back.
It was lunchtime, so I ate and was resting in the chair after eating, then a nurse came in, sat on my bed and said, “Are you ready to go?” “I can’t go yet” I said, “I’m waiting for the results of the final X-ray”. “Only we need the bed, we’ve got someone else coming in” she said. And went. So, I packed up my stuff, called Godfrey again, and waited.
About an hour later, my bedside phone rang. It was one of the nurses saying the X-ray showed no effusion, so I could go now. I can’t leave just yet, I said, I can’t carry my own bags and my partner’s not here yet. “Where is he?” “On the tube, on his way” “When will he be here?” “I don’t know, I can’t contact him, he’s probably in a tunnel.” It’s a Sunday service on the trains: it takes as long as it takes. “Only we need the bed” she said.
OK, I said, could someone give me a hand with my bags? “Someone will come soon”, she said. I waited. After about half an hour, no-one had come. I walked round to the nurses’ station, the usual gaggle of 4 or 5 nurses there doing nothing, and I asked, “Could someone please come and help with my bags?” “Someone will be there soon” one of the nurses said without looking at me. I went back to my room.
About half an hour later, no Godfrey, no porter, no nurse, no contact from anyone. I was unhappy, and stressed, and not thinking clearly. Suddenly, I couldn’t stand it anymore. I’d had one too many “someone will be there soon”s. I needed to vacate the room, but couldn’t lift my own overnight bag, I’d just had a sternotomy and wasn’t allowed to carry anything heavier than 6lb. In desperation, I picked up my light hand luggage and began to kick my overnight bag along the corridor towards to the lifts, just in front of the nurses’ station.
When I got to the nurses’ station, one of the 4 or 5 people loitering there turned and looked at me with horror of her face. “You can’t kick your bag down the corridor like that!” she shouted, and grabbed it up off the floor and put it down on the dressing trolley. I saw red. “Don’t put my dirty bag on your clean dressing trolley!” I shouted – I’m not even a qualified nurse, and I know you just don’t contaminate them like that. “It’s all right, we clean it all the time” she replied defensively referring to the trolley. Then the lift came, and she snatched my bag off the trolley and put it in the lift. “There you go” she said. She turned her back, and left me to get into the lift alone. The other nurses all ignored me. At the ground floor, I had no choice but to kick my bag out of the lift and along the corridor to a waiting area.
By the time Godfrey arrived, I was in tears.
It should have been possible to a) prepare me for discharge by mentioning beforehand that as I was healing well I might go home early, b) to allow me to wait until Godfrey came – he was on his way after all, c) to tell me a porter had been requested (if one had) to help me and give an estimate of how long I’d wait, or d) for one of the nurses to say, hang on I’ll give you a hand with that bag. But none of that happened. It was cruel.
Final Thoughts
I’ve gone on for long enough. I haven’t mentioned my difficulties with anti-emetic drugs, or the lack of any post-surgery clinical feedback, or the mysterious physio process whereby you learn breathing exercises by telepathy, or any of the other minor annoyances, because it’s too boring and didn’t affect my condition.
All the things I have mentioned were OK in the end, but might not have ended well. All of them could have been avoided with only the tiniest bit of care or concern. Nothing that went wrong was to do with inadequate training, or lack of equipment, or poor staffing levels, or any of the other excuses you always hear bleated out when there’s a court case. All were about a lack of empathy and understanding of what it is like to be a patient.
I’m still wondering whether to raise these matters formally with the Trust, or whether I’d be happier if I just got on with my life. Maybe I should attend more to the sacred words of Eric Idle…………….
“Some things in life are bad
They can really make you mad
Other things just make you swear and curse.
When you're chewing on life's gristle
Don't grumble, give a whistle
And this'll help things turn out for the best..
And...
Always look on the bright side of life...
Always look on the light side of life...”
They can really make you mad
Other things just make you swear and curse.
When you're chewing on life's gristle
Don't grumble, give a whistle
And this'll help things turn out for the best..
And...
Always look on the bright side of life...
Always look on the light side of life...”
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