Safety, Kindness, Teamwork & Improving

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 about 10 pm Saturday, the nurse doing the evening drugs round asked if I’d like to use the nebuliser. “I’m not sure I need it: my ‘asthma’ is asymptomatic” I replied. She explained that it had nothing to do with asthma, and instead was an essential aid to recovery. Blood clots can form in your lungs and the nebuliser helps you cough up bloody phlegm, reducing the chances of post-surgery infection. Oh. I wish I’d known. Now I was scared that I’d created a post-surgical mega-problem. However, coughing post sternotomy is extremely painful and in any case I needed to sleep, so we agreed I’d use the nebuliser in the morning.

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.

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...”

Record Keeping

(a post by Godfrey)

University College Hospitals have an impressive digital imaging system that keeps images of patient documentation, X-Rays, CT and PET scans etc.

However, the idea of the "paperless office" is very far from everday reality. Nurses in particular seem to spend ages reading and writing things on paper.

One or two nurses and an Anaesthetist had sat reading Carol's paper casenote file at the desk while we were waiting for something to happen in the Surgical Admissions Unit (Personal v Professional ). Half way through through the interminable morning Carol decided to break the monotony of the empty room  by thumbing through her notes on the desk. They were clearly marked with her name and patient number. She turned to the PET scan report to find with incredulity, that it revealed that she had advanced adenocarcinoma of the lung which had invaded the tissue of the diaphragm. The report also revealed that she was a heavy smoker.
Mmm shome mishtake surely -Ed?

The report in fact related to a Carole H***** of Hertfordshire. Misfiling of notes relating to patients with similar names is one of the obvious mistakes which is why DoB, addresses and hospital number are there in the records to prevent it happening. However, just below that was another report relating to a male, a Dennis Q****. No where was a report of Carol Harding's PET scan conducted a month ago.

We were shocked. Several people had looked at these notes, and apart from the CT Biopsy results, the PET scan was probably the next most relevant diagnostic. Yet no-one had noticed, including the Anaesthetic Registrar. Suddenly it became clear why she had asked Carol about her smoking during the pre-op anaesthetic assessment.

As we were discussing this, the nurse came back into the room after a long absence and saw us with the casenotes on the bed. "I'm sorry, you are not allowed to read your notes", she said, with an outstretched hand signalling Carol was to hand them over. "I think I have every right to". "No you need the doctor's permission". As Carol had read them anyway, she handed them over.

It is of course part of the Data Protection Act, and the NHS Constitution that patients have the right to access their notes. One of the reasons for this is to correct inaccurate data in their records.
The NHS 2011 Care Record Guarantee states:
It is good practice for people in the NHS who provide your care to:
• discuss and agree with you what they are going to record about you;
• give you a copy of letters they are writing about you; and
• show you what they have recorded about you, if you ask.

The Surgical Locum came to read the same notes, and before the Consent Forms were signed Carol informed him of the error. Unlike all the other clinical staff that had looked at them, he had noticed, and removed the misfiled records. He agreed to have a word with someone.

Within half an hour, a "Ward Manager" appeared and seemed to start off with the line that Carol shouldn't have been reading them. In the end she made an apology and shuffled off. Next, the Thoracic Clinical Nurse Specialist appeared, all smiles, and apologised for the mistake. Her P.R. role in smoothing over complaining patients was noted elsewhere. Finally, a business-like woman in a smart trouser suit appeared announcing herself as the "Matron", who wished to assure Carol that no clinical decisions were taken on the basis of mis-filed diagnostic reports in the casenotes, as the computerised records were the first port of call. Yeah right, so how does that explain that the anaesthetic registrar was proceding on the basis that Carol was a heavy smoker? Would she be prepping her for a lung removal or diaphragmatic resection?

All three apologies were clearly damage limitation exercises. It was interesting that the potential of a medico-legal complaint got these characters to magically appear, but they were no where in sight when the Surgical Admissions Unit clearly needed some managerial intervention.

What has happened to Attention to Detail? What sort of calibre of staff is it that misfiles not just one report, but two? What sort of clinical discernment is present in nursing staff and a Registrar that don't notice such glaring errors?

---

As an addendum, take a look at this Nursing Referral Form. It was filled in by a nurse on discharge in order to get the sutures removed at our local GP Surgery.

  Look at the operation she has put down. Carol had a median sternotomy - cutting vertically through the middle of the breastbone to gain access. A sternectomy is the complete surgical REMOVAL of the breastbone. It is a major extremely unpleasant procedure. The difference between an -otomy and an -ectomy is first year nursing student  basics. And the operation was not a biopsy. A biopsy retrieves a tissue-sample. It was excision or removal of thymoma. Again, if there is lack of attention to detail here, then one might reasonably question, does this lack of clinical precision extend to other areas of nursing record-keeping? Will someone make a mistake where it really matters?

Recovering

I've been back home for a week now, and am slowly recovering.

I think I was probably discharged too early. I've been in a bit of a daze since I got back, prone to bursting into tears at nothing at all and feeling not at all sure what was going on. I've been completely obsessing about the care I had in hospital one minute (of which more on another occasion) and then the next, just unable to think about it at all.

The King's Head

A fortnight before the operation, we met a man outside the pub opposite The Heart Hospital who'd had open heart surgery there. He was saying that he felt really odd after the surgery - his heart had actually, physically been touched by a stranger, and not in a good way, and it felt so wrong. He had been saved by the surgery, but also violated by it. I don't feel that way, but I do feel  that the experience was extraordinary and should change me forever. The fact that such an event can happen - on the physical plane, that my chest can be opened so wide that the muscles along my spine ache, and then closed again and I will probably be fine afterwards; and on the meta-physical, that my apparent healthy active life was actually a lie because  all the time I was harbouring a silent killer - these are big things to deal with.

My reactions so far are puny. I don't think I've really taken in the reality of the situation. I've been getting tearful for no reason, feeling an existential sense of loss, but haven't yet taken in the fragility of life and the importance of being true to my core self and the people I care about. I'm still focused on trivial, practical things.

I'm doing breathing exercises, to get back the full use of that pesky right lung which has been squashed for so long and we are trying to get me moving, to build up my stamina. The first time we went for a walk, I got about 70 yards before I had to turn back. Yesterday, we went over 500 yards and although I was breathless when we got back, I recovered quite quickly. So that's good.

We were worried for a couple of  days about the incision scar, it seemed unusually hot, red, itchy and raised, but didn't seem to get any worse and I didn't have a temperature, and now that's getting better too. The scar goes the whole length of my sternum, and there are 3 new belly button holes beneath my rib cage, where the drains came out. Look away now if you're of a nervous disposition:

5 days post surgery

On a practical level, it's very odd, what I can do and can't. (I wish I'd paid more attention to anatomy lessons at AT school, but I used to doze off all the time. More than once, I was still asleep in the corner when everyone else started going home.) Anyway, anything using my chest muscles is, of course, compromised. I can push, but I can't pull. Carrying mugs is easier than carrying plates. Simple things like washing my hands or opening a jar or getting off the sofa hurts just a bit.

On the other hand, I really thought a week after discharge I'd still be lying on the chaise longue with Godfrey feeding me peeled grapes. Instead, I'm pottering around the house and garden, and so long as I'm careful, I'm doing OK.

Back Home!

I'm home! Back in sunny Brentwood!

The operation has been done and the thymoma extracted, and after 24 hours in ITU and 3 days on the ward I was discharged back into Godfrey's care yesterday (Sunday). It was a bit of a surprise all around, quite honestly, but I'd far rather be here than there, and I seem to be OK.

We think the operation was successful, and although there's things to say about the hospital stay, I'll save that for another day.

Many thanks to all for kind and thoughtful e-mails, cards, letters and comments.

Day 2 on the 4th Floor

Progress since yesterday:

• Sitting out of bed some of the time
• Taking some food and keeping it down today thanks to anti-emetics
• Catheter out 
• Oxygen tubes removed
• Able to walk small steps to en-suite toilet
• The central chest drain has been taken out
• Blood and pleural effusion still draining from other two
• Another X-ray today to check effusion and r. lung re-inflation

Carol with Chest Drains

Each patient has there own "mini-bar" fridge by each bedside. There also a bedside TV with touch screen for access to TV, BBC iPlayer, movie channels, and the Internet. You can tell this used to be a Private Hospital!
The mini-bar is now overflowing with appetising morsels of fruit salad, smoothies, grapes and orange and pomegranate juice. I decided to leave out the Gordon's for now.
That's all.
Carry on.


Godfrey

Cardiothoracic Intensive Care Unit

Carol's operation took place late on 13th June and seems to have gone OK, with the tumour removed. After 24 hours in ITU, she was transferred to the 4th Floor cardiothoracic ward in the Heart Hospital.

Post op exhaustion

She has been in quite a lot of pain at times, at the site of the sternotomy incision, but also the "stab" wounds where the drain tubes for the left and right pleura and mediastinum enter the thoracic cavity. They may come out tomorrow so that should help .

She is utterly exhausted, with quite limited breathing at the moment. She said that just "being" was all she could manage. It was an "all-consuming" effort. She dozed off several times during the time I was there today (Thursday 14th June), but then a lot of people do that when I talk to them.

Godfrey.

P.S. Little "Ridley",  as we call him,  has been sent off to Histopathology to see if they can tell more about what kind of miracle of nature he is.

Personal v. Professional

Personal v. Professional

( Thoughts from Godfrey... )

Although it’s 15 years or more since Carol & I were NHS managers, the managerial perspective becomes an old habitual pattern of thinking after 20 years. They say that police officers after a similar period, will always have their “copper’s radar” on, always on the lookout for a dodgy geezer. And so it is with Carol & I. At the same time as going through a very personal and anxious time before major surgery, we nevertheless couldn’t help looking at the quality, efficiency and effectiveness of the various systems and processes that were in place. There is huge room for improvement.

Let me take you through the events as they unfolded.

The Surgical Admissions Unit is a room with 3 beds in it at the end of the corridor on the 3^rd floor of the Heart Hospital. The letter Carol had received said arrive at 7.00am, and that you can only drink water up to 6.00am. 

Staring Out of the Window ...waiting

 

6.50am Emerging from the lift we asked a passing nurse about where to go for admission. She pointed down the corridor saying the “SAU” was the door at the end on the right.

6.55 The room was deserted. There were 3 beds one of which had dirty linen lying on it. We waited.

7.00 Carol went to the patient loo. It was a mess, paper towels thrown everywhere.

We waited.

7.30 A few nurses walked up and down the corridor but no one came in to see who we were and what we were doing. We waited.

8.00 More activity. A nurse came in and shuffled through casenotes, wandered in and out without even acknowledging our existence. Later a man came and sat at the desktop computer, similarly ignoring us. Nurse returned and sat beside him. They spoke in hushed tones, but we did overhear him describe himself as “a floater”.

Still ignored

8.20 A nurse came in asked if Carol was “Carol Hardings” [sic] and gave her a gown to put on, saying take off all underwear and put it on. She then left, never to be seen again. The bed curtains were left completely open. Not wishing to expose herself to the un-introduced male “floater”, or the various people you could see in the kitchen windows and the nearby roof garden outside, Carol struggled to draw the sticky curtains.

8.25 As I returned from the loo, Carol was trying to draw back the curtains which refused to go around the bend. Meanwhile the nurse had silently stood up from the workstation and walked straight past the patient struggling in vain with the curtains. Nothing to to do with her.

8.35 A different nurse came in to take blood samples and put an ID bracelet on. When asked, no-one knew when Carol would be taken to theatre. Various other people wandered in and out chatting.

8.45 An anaesthetic registrar came in to read Carol’s notes, spending a considerable time chatting about her personal stuff to the colleague perusing the computer. Carol remarked quietly, “It seems rude to eavesdrop on a private conversation, do you think we should leave the room for a bit?”

8.55 The anaesthetist went through the patient history with Carol. Symptoms, when scans were done, including asking how long Carol had been a heavy smoker. “I’ve never smoked”. “Oh, I though I’d read in the notes that you were a smoker” was the response. Strange, we thought. (but more of that later).

9.10. Yet another nurse we hadn’t seen before asked about Carol’s “prephyorrty”

What? So she repeated the question. Oh “PROPERTY” Clearly not a level 7 IELTS then. Then she asked if Carol’s red leather handbag was her “Wiizhe-berg”. No, it’s a handbag. The nurse seemed satisfied with this answer and left. We never saw her again either.

Then there was a long period of waiting including a new more mature person saying to me her name and that she would be booking me through the system. "I hope not, I'm the patient's partner". Another member of staff I never saw again. Then a sister(?) from Floor 4 apologising that the person who was supposed to be there hadn’t turned up, and would Carol like a pillow? (”No I want to know what’s happening. Are they going to operate on me or not?”)

She went off somewhere, and returned to say Carol was on the list for 12.00. An urgent case had been brought in previous night to go first in theatre.

Carol’s response was "Then why have I been sitting here like a lemon all morning waiting around half naked, and why, if hydration is so important pre-op, didn’t someone tell me at 8.00AM that my slot had been cancelled so I could have some water?" (A gap of 2 hours before anaesthetic is required:http://www.rcn.org.uk/__data/assets/pdf_file/0009/78678/002800.pdf )

10.30 Thirst intensified. Nurse from 4^th floor suggest I/V fluids.

The Clinical Nurse Specialist comes in. Carol complains of raging thirst, and says that a I/V line to rehydrate her has been mentioned. The CNS says says "No, we don't do that here - it's not our policy to give pre-op I/V fluids. Try dipping your fingers in cold water and rubbing your gums". She disappears.

Yet another nurse turns up to fit cannula for I/V fluid. Carol says:"Your CNS says it not the policy to give I/V" Nurse goes away to ask. Comes back and inserts a cannula into Carol's wrist..

11.30 Still no saline drip set up, while the 4th floor nurse sits there writing. "How’s that virtual I/V working for you then Carol?" , I say, in a voice meant to be overheard, It’s already been a long frustrating day. If the op is at 12.00 it doesn’t leave much time for rehydration. The nurse carries on writing.

12.10. Nurse stands up, let’s organise that I/V fluid then she says. And does so.

More waiting including an interesting debate on casenote management, record-keeping, subject access rights under the Data Protection Act and the NHS Constitution. More on that debacle in a later blog post....Record Keeping

1.30 Two east European nursing auxiliaries came in to strip and remake the used bed and talked loudly to each other in a language we didn’t understand, Occasionally, one of them looked at me with a serious expression. I was reminded of the Harry Enfield sketch where haughty Polish shopgirls in a newsagent say things about him in their native tongue that he is unable to understand.

Abandoned SAU Desk

2.00 What the hell is happening? Wasn't it supposed to be a12 o'clock op? Everyone has disappeared. We wait. Find the nurse call button as Carol attached to I/V. Back from lunch, the Nurse rings theatre. Apparently the department organising the correct blood type transfusion didn’t get the blood samples early enough. “That’s a lie. They were sent up at 8.30 this morning”. So the surgeon is doing a lung op while they sort it out. More waiting.

2.30 At this point I’m seriously wondering whether the operation will be cancelled. How long before another theatre slot can be found. We had to wait a fortnight for this. Our adrenaline and cortisol levels are red-lining. The tumour is growing, maybe invading….

2.39 Without warning, the theatre porter turns up with a trolley and Carol is wheeled off to Theatre.

It’s been a long and stressful day already. Carol is in tears. Good job neither of us has a “dicky ticker”.

That was the subjective experience from a patient and their next-of-kin's perspective.

From an NHS managerial perspective, the way these interactions unfolded demonstrate deficient processes which fail on grounds of quality, efficiency, and clinical effectiveness.

1. Out of an elapsed time of 7.5 hours (07.00hrs - 14.30hrs), the actual patient- staff contact time was about 45 minutes. And yet much of that contact time consisted in innumerable and mostly fruitless interactions with at least 12 different individuals spread over the entire morning. There was absolutely no need for a fraught moblie patient to be isolated in an empty unlit room dressed only in a skimpy nightgown the entire morning and lunchtime.

a) It is not efficient, to have so many different members of nursing staff walking to the room at the end of the corridor to engage with a patient in order to simply disappear.

b) It is not effective, given that so many of the interactions seemed to require identifying the name of the patient, but resulted in no further intervention.

c) It is of sub-optimal quality in terms of nursing care. The whole principle of the "named-nurse" initiative, is to provide a single familiar point of contact that is reassuring to the patient, avoids overlap of duties, and reduces unnecessary duplication and repetition in communications.

2. There was a lack of managerial oversight. If a member of staff fails to turn up for work, then a designated replacement, fully conversant with the required pre-op clerking and assessment procedures should take their place. It was clear that the variety of staff involved were uncoordinated. No manager was seen on the SAU taking charge to cover for staff absence. As each staff member appeared at various and apparently random times, they had to ask the patient what had happened prior to that, what had been done or not done. There was no "plan" that anyone was working to. Managers should formulate a clear procedure which all relevant staff are familar with and trained to enact. They should not have to "wing-it" just because the person who normally attends SAU is absent.

3. Communication was abysmal. Airport management have recently learnt the hard way, that what makes delayed passengers angry, is not so much the fact that their flight is delayed, but the fact that they are kept waiting without being given any information as to what is happening. It was a question that Carol frequently made to various staff "What is happening?". No-one knew, or at least we assume they didn't, because as often as not, they'd walk out of the room without answering. Clearly, theatre knew when the planned operations were to take place, and they knew when there had been a delay due to a cross-matching foul-up. Why is there not a procedure in place whereby the surgical admissions unit has immediate access to the same information? 

The absence of communication has a clinical component too. Patients who feel heard and informed, form the impression that all is going smoothly. In a cardiothoracic centre, allaying the anxieties of patient's facing major surgery is likely to be of benefit clinically, as well as a matter of human respect and courtesy.

 

4. Staff attitude.

Being asked to strip in front of an open window on a level with residential windows and roof gardens without drawing the curtain is hardly consistent with maintaining the patient's dignity and privacy.

Being asked to do the same in front of a man looking at a PC monitor on the desk directly opposite is also wrong. He had not identified himself, he was not in any nursing uniform, white coat or theatre scrubs.

A nurse ignoring a patient struggling with patient equipment (bed curtains) should seek to assist, not walk aimlessly and casually past as if the patient was invisible.

Walking away, or turning your back, on a patient who has just asked "What's happening, I thought my operation was due to start 3 hours ago..." is unacceptable. The appropriate answer, is "Give me a minute and I'll find out for you".

5. Confused Clinical Protocols.

The previous week, the Clinical Nurse Specialist had emphasized in a phone-call, the importance of being well hydrated before the operation, up to the cut-off point of 6.00 am. (ie 2 hours prior to earliest likely anaesthetic). If staff had known, or bothered to find out that the operation had been rescheduled for 12.00 and again, 14.45, Carol could have safely sipped water up to 2 hours prior to the scheduled time. Yet throughout, it seemed that staff were sticking slavishly to the 6.00am "rule" on oral water, without any understanding that thiis could be altered depending on the later time of the operation. Requiring a patient to start surgery when  insufficiently hydrated is contrary to good nursing practice.

And yet the same Clinical Nurse Specialist, who emphasized the need for pre-op hydration on the phone, was adamant that no more clear fluids could be taken orally and it was not their policy to set up I/V fluids for pre-op hydration. It would appear that if this was an official policy, other less senior nurses were happy to ignore it, which in these (wholly avoidable) circumstances was the clinically correct thing to do.

 

SUMMARY

On the 13th June 2012, the Surgical Admissions Unit was largely unstaffed, and the presenting patient was treated casually, in a chaotic and unplanned way, involving a succession of nursing staff who clearly were reacting in the moment, but not taking any overall responsibility for the swift and thorough preparation of the patient for surgery. Management systems to co-ordinate pre-operative processes were apparently non-existent, as were senior nursing/clerical management themselves.

I noted that the Heart Hospital online feedback from "Gregory A. Dec 2011" seems to have formed a similar opinion about the pre-admission process. He complained about the "Communication between staff (nurses, admin)/doctors...The chaotic, uncaring administration.

I was left in a bed without food, water or any information for more than 17 hours waiting for an operation that was postponed."

The hospital staff worked well together…hardly at all

I was treated with dignity and respect by the hospital staff…not at all

I was involved with decisions about my care…never

On 24 February 2011 the administrators responded to his feedback on his experiences at the Heart Hospital: "I'm very sorry that we did not meet your expectations on this occasion. We always strive to offer excellent care to our patients and your experience clearly falls far short of that."

Clearly, that's just automated P.R. guff. Four months later and another patient's experience draws the same conclusion. These shortcomings can be remedied. Elective surgical admissions can be organised with a much more patient-centric and patient-friendly procedure, as they are in other hospitals up and down the country. 

 

In my experience of under-performing hospitals,and under-performing hospital departments, it is very rare that failure can be attributed to the ordinary individual staff-members. It is a failure of management that causes complaints like this. Indeed even poor staff attitudes can be attributed to poor management where morale is low, guidance is absent, and where managers fail to take remedial steps when warned of a problem.

Pre-Surgery Nerves

There is nothing intrinsically scary about major surgery. I know that. Perioperative deaths are relatively rare these days. Risk factors include age, high blood pressure, high heart rate, co-morbidities, access to critical care immediately post surgery, and the skills and training levels of the surgeon and anaesthetist. None of these is a concern for me.

Also I am very well aware of the consequences of non-intervention which are, not to put too fine a point on it, ultimately fatal.

Yet I'm scared.

Physician Struggling with Death For Life.
Photogravure by Ivo Saliger NLM.

We thought I was being admitted today for an overnight stay pre-surgery, but it turns out it's tomorrow: we're to get there at 7 a.m. (leave home around 5 - I didn't even know there was a 5 a.m.) and then I'll shower, have the pre-med and away we go.

Godfrey has the worst of it, coming all that way with me at dawn, then back home for some kip (how likely is that to happen?) then back to see me in the afternoon, when I'll be drooling and covered in drips and drains in CCU. Lucky man.

But this is the NHS, we have to ring this afternoon to check if there's been a last minute cancellation because of some poor sod in a much worse state than I am. If that's the case, I'll let everyone know.

Sicknote

I called my GP, Dr Natarajan, a couple of days ago, to get a sicknote sorted out. It briefly crossed my mind do this some weeks before, but then something happened and the thought went completely out of my head: which it says everything you need to know about my state of mind at the moment.

At the end of May, near payday, Lyn from work rang and asked what I was doing about getting signed off. I went blank: when she heard the confusion and panic in my voice, she suggested I take a couple of weeks paid holiday for the time being while I sort myself out. Thoughtful, kind and organised. Bless her.

I work for an accountant in Shenfield. Part of what we do at work is sort out the paperwork of people who, really, have got the nonce to organise themselves - they are running a business, after all - but they get distracted, can't get themselves to concentrate for long enough to anaylse their financial records, forget about the deadlines, or can't face the dreaded official forms, so they pay us to do all of that for them.

I realise I've switched sides: stopped being the sorter-outer, become the sortee.


Once I recognised I had to contact my GP, I began to panic about that. After all, I look fit and well - I am fit and well, bar the geting exhaused walking up stairs/not sleeping/getting tearful over minor setbacks/unable to think about anything concrete for more than 5 minutes, and so on. I read all the stuff in the papers about sick notes being replaced by fit-for-work notes, and about disability scroungers, and think, am I actually able to work after all? Will the GP give me a hard time, call me a lazy layabout, tell me I need to pull myself together and knuckle down? Will he say he can't sign me off now but demand that I see him immediately when I get out of hospital, make me sit in his waiting room feeling like death and risking infection so he can see for himself just how ill I am?

I finally called the surgery on 6th June after the Jubilee waterfest weekend to be offered an appointment on the 15th June. I'll be in hospital by then. OK, said the receptionist, how about the 12th? That's admission day. No. We agreed that he would phone me on the 7th.

Pacing around all day, waiting for the call, afraid to spend too long in the shower, listening for the phone, checking the line, ringing the surgery to check he really was going to call, I'm getting obsessive about this and I know it but I can't do anything about it. Finally just after 5 he called.

He was lovely. He'd had some of the correspondence from the hospital doctors, so had a rough idea what was going on, but more importantly, he understood how it felt to be given the original hideous diagnosis, then another which wasn't much better. He recognised that I had gone into a tailspin, and seemed to think that was OK in the circumstances. He even said that although he did want to see me postoperatively, "you've had enough doctors appointments going on recently, let's not book anything else. Come and see me when things have calmed down a little, after the surgery is over." And he's signed me off until near the end of July: by which time I'll be recovering from the operation and we'll know about any postoperative chemo/radiotherapy. I hope.