It didn’t start well. The show was hung, and the private view was going well, but I was starting to feel increasingly unwell. One of the visitors said my painting made her heart sing, but I was inarticulate, barely able to hold a conversation, not an intelligent one anyway. I held onto the wall at one stage to stay on my feet, and was persuaded to sit in a corner. Later that night my partner loaded me into the car and drove me to the emergency room in Eastbourne. We chose the car because ambulances directed to Seaford come from Lewes, a different health authority, and have instruction to take ‘casualties’ to Brighton. Of course, my records on the computer system at Eastbourne cannot be access by the system Brighton uses. Not a ‘National’ Health System, is it?
I was admitted to the Urology ward – the nephrostomy catheter had come out; my kidney was no longer draining. I was admitted and put on pain killers until my scheduled operation to remove the faulty kidney and ureter on the 20th. No question of bringing the operation forward, for two days I should just wait. Spent it observing the ward and writing little notes about my experience.
Urology wards are all about kidneys, bladder and prostrate. Patients were often Type 2 diabetic, it seemed to me nearly 50%, who often bought sweet treats from the Friends trolley as it made its daily rounds. Such foolish behaviour, and sweet snacking often came because they had not been told of the importance of diet, but why were they tempted in this way? It was a death trolley, carrying nothing suitable for diabetics, but products to drive them further into the disease. Many already had minor amputations because of diabetes, others were emergency admission because of the impact of the disease.
My problem dated back to years of kidney stones, but brought to a head by damage done by numerous insertions of a camera via the bladder and ureter to check the kidney. Scar tissue blocked the ureter and eventually the kidney died. I am grateful however as on one of these inspections early stage bladder cancer was spotted and then cured. New problems arose from my experiences in the wards however, mental rather than physical, and more difficult to deal with for being totally unexpected.
The whole ward was filled with a miasma of farts. The side effects of so many painkillers are constipation, and patients are encouraged to fart to relieve internal pressure. Some of the staff set an example for us. Our partially deaf patient/companion farted loudest – presumably because otherwise he couldn’t hear his own. He watched telly and occasionally the earphones became disconnected – he didn’t hear it but the rest of us got multi-decibel exposure to whatever he was listening to. Amazes me it didn’t register as a problem with staff who just walk by until eventually frantic waves brought a nurse in to push home the connection and silence the sound.
Not his fault but another example of how more thought needs to be given to design of the kit – after all connections from a camera to a laptop can be locked to stop them pulling out, so hospital sound system should be solvable in the same way. At least his sound track temporarily drowned out the farts.
The poor bloke in the next bed suffered after his operation. He had the same operation I had scheduled for the following morning. He needed frequent nursing overnight, but just 24 hours later was discharged. It gave me hope. The painful night of my neighbour was an unwelcome precursor of what might await me after my operation, which one of student nurses would be observing. I told her not to go sticking her finger in anything. How can we load fees onto these students? Nurses will enter the profession with debts of £30,000. Given the shortage of home trained staff this seems remarkably and stupidly counterproductive.
It was that part of the day when people wait their discharge papers. Dressings were checked out by nurses. Then checked out by doctors. Then checked out by nurses again. Then all wait for the consultant to sign off on their repatriation to their loved ones. Of course, for the consultants it’s perhaps just another piece of paper over their desk. Or maybe another notch on the gun handle in their gunfight with disease. But to each patient the piece of paper is more than peace in their time, it is a passport to going back to their old lives, fit again and free to continue – but of course secretly knowing it isn’t, that it is a temporary stay in the slide towards death.
Four of the occupied beds had patients called ‘Pete’. Just Nigel was different, and he was deaf so mostly answered to a poke. Oh, and me, a Patrick. The ward is not a social community. Peter was selfish with the selfish unawareness of others that Alzheimer’s can bring. He thought he could sing, knew only about two songs and not all of them, but spontaneously, at any hour of the night or day, burst into song regardless of the others.
Nigel was disappointed he won’t be going home. Nigel was spared the singing as he is largely deaf. He rang home and spoke to what must be another largely deaf person from the decibel level, making a sound that would be welcome amongst football supporters. “Hello” he shouted. “Hello” answered Peter from the opposite end of the ward. “I’m not coming home today – yes, not today, no, no, tomorrow maybe but not today”. “The pearly gates are open for you” screamed Peter cruelly. Later we hear Nigel wail “I’ll never see you again” despairing of leaving the ward as he waited interminably for Social Services to organise home support. His wife of sixty years refused to leave the house to visit him.
Peter is going home, and we were all pleased – not for him but because we would be spared night-time renditions of ‘Tipperary’ and his tuneless warbling interspersed with attempted flirting with the ward nurses. They were patient with him, but avoided him if they could. His unanswered night bell would lead to his calling out ‘come in, come in’ as if it was his doorbell, waking all the other patients. Peter is 90+. I hope he had a loving family to take him in, for anyone else the fee wouldn’t be large enough.
Peter the Third? He stuck his nose in the Telegraph, turned off his hearing aid and tried to pretend the rest of us weren’t here. I wondered perhaps, did he just stop paying his private medical insurance? Any way he was sure he was going home almost immediately. Without engaging in anyone in conversation apart from complimenting the upper echelons of ward administration…
I had 8 days of this diverting comedy. Oh, then another Pete is half out of the bed and struggled like an inverted turtle, better press the call button to get him help. No-one answers…
Nil by mouth on the day of the operation. Just as well as the breakfast trolley has lost a wheel and arrives late, and without any bananas. A new patient filled the bed in the corner, and his lady kindly offered a surplus banana. She arrived at 8 a.m. after a poor experience in casualty and was now going to stay with her partner to ensure he is looked after. She ends up staying 12 hours a day, day after day.
She complained of consultants who were not up to speed proposing treatments that had already being carried out. She had a crisis in Casualty on Sunday, caused by ignorance and not listening, and an alarm button being pressed with no response. This is one angry lady who has no trust in NHS systems, and again it is not the staff but management and the consultants who she thinks are more interested in what they can earn elsewhere than in reading patient notes properly.
Apocryphal tale heard on the ward: A consultant is chased by HMRC after he fails to pay any national insurance on his earnings. His accountant says it comes due after earning £20,000 and asks does he exceed that limit? After some thought the Consultant says “Not every day…”
Eventually my new banana friend has goes on his day trip to Brighton, investigating why his cancer has cost him the use of his legs and receiving radio therapy. Like me he had his bag of piss attached to his leg. His lady went with him, saying to the ambulance crew she won’t take up much room. As his treatment pathway manager, she was not letting him out of her sight, and will be back with him until 8 or 9 tonight making sure things are done right. As they pass on return I ask if the get ambulance miles – you know like airmiles, with upgrades… It raises a smile.
I was woken the next day by the registrar. No memory, or at least only a vague memory, of coming around after the operation, which lasted well over 4 hours. “Are you alright” he asks anxiously, as I had apparently complained of chest pains in recovery. Probably due to the tight strap they had wrapped around me during the operation. He says the removal of kidney and ureter had been a success but unfortunately an artery was removed “in error”. However, I would be alright because, after all, I wasn’t in intensive care, was I? The student observer later told me how the whole operating theatre had an ‘oops’ moment and froze when they realised the mistake.
I was woken later by news that some bed shuffling was going to take place to make room for additional patients. The wards were crammed and beds line up in the corridor like a wagon train waiting its scouts before setting off across the prairie. One patient was wheeled in cursing and complaining bitterly at being moved, aggressive towards the staff, but settles down evidently embarrassed by his outbursts. Some of the painkillers we are fed produce mood swings you wouldn’t believe…
Second day and I become a little more mobile. My urine is being measured to check the performance of my remaining kidney, and I am scanned with ultrasound to check my bladder is emptying. Panic from the nurses as they can’t find the bladder with the scanner. It was almost invisible as it had shrunk down to almost nothing being completely empty, and making it difficult for them to see. A moment of humour…
Like many I went to the toilet to piss in a jug and nurses took it away to test and measure the contents. One jug full remained in the toilet on the back of the sink for two days, and later the rinsed and empty jug lay on the floor in one corner, whilst I saw behind the refuse bin a small heap of paper towels that lay like tumbleweed waiting for the prairie wind to blow them away.
On the ward humour was in short supply, as when the guy in the corner backed his consultant up with sharp questions. Eventually they drew curtains around them and my heart was cleft in two by the cries of his partner as they received bad news. Her sobs went on for two hours. Eventually two senior staff came and helped her out of the ward, where white faced nurses tended us in silence, and tears trickled down cheeks as emotions overflowed.
My side was swollen but I am assured that fluid will drain and so after a couple of days I was sent home. My partner wheels me to reception in a wheelchair and I breathed fresh air again. Freedom didn’t last though as two days later I am admitted in great pain, again my partner taking me in her car to avoid an ambulance journey to the wrong hospital in Brighton. The swelling was an abscess forming under my wound, and the pain became unmanageable. Speedily readmitted I was put on a drip of strong antibiotics, which quickly start to take effect, along with very strong painkillers.
Across the ward another patient, older than I, was also readmitted with a post-operative infection, his daughter bringing him in. She went home when he is resting, on oxygen which helped ease him into a restful sleep. She returned mid-morning to find he has deteriorated. She pleads with him to fight to no avail while doctors and nurses scurried around organising for him to be taken down to intensive care as his bodily systems slowly seemed to be shutting down. She followed the bed, another tearful distraught relative. Someone put your arm around her please, she needs comfort too.
It is now three weeks since my operation. I am healing well, becoming more active, and starting to work on drawings for the next painting. My partner shows iron will in forcing me to follow advice and take it easy, ignoring my sulks at being forced into inactivity. She is right, and I am reducing painkillers and becoming more comfortable, despite still being somewhat asymmetric around my middle. I lost weight and am now the thinnest I’ve been since I started at art college 50 years ago. It is a long step to getting fully well, and writing this is part of the healing process.
Our NHS is in trouble, overstretched in every area. Patients and their families must take responsibility for their own care pathways as no one in the NHS seems to be in charge, there is no patient ‘project management’ in place. Some things would seem simple to fix – for example why does a town like Seaford have no ambulance station but must rely on ambulances from the smaller town of Lewes over ten miles away. And why do those ambulance crews apparently have instructions to take folk to a different health authority to their own? Why can’t the computer systems talk to each other? Systems have been introduced in construction to ensure everyone shares computer information on a project (BIM) so why can’t this be done in the NHS?
I am focussed on getting well again, and on getting back in the studio. I am determined to get back to full fitness. But then we never intend to get ill do we? The NHS is a great national institution, reputedly the world’s second largest employer (after the Chinese army). It is incompetently managed, by an overpaid jobsworth crew. The computer system in the hospital I was in (Eastbourne General) kept crashing. If 300 bed hotels can maintain enough bandwidth for guests and operations at a cost of 1p per room per day, this is not rocket science to resolve for a hopsital surely?
Nobody in the civil service gets fired for poor decision making. Maybe this is the root of the problem and it is time it was changed.
We deserve better.