In this article, John Davis continues to discuss his recent near death experiences and critiques his experience of being discharged from a Scottish hospital.
The previous article explained the limitations of some of the staff in the Scottish hospital that I had been returned to from the USA. It would be easy to blame my frustrations concerning the Scottish hospital on my impairments – but I am sure that I am not exaggerating my experience and this article draws from various reports to show how bad Tory austerity has made things for staff and patents who work in or use the NHS.
I had left for the USA on the 28th of March 2019 – that date now seems a lifetime ago. That person that left Scotland on that day and arrived in San Francisco feeling a little under the weather, before falling seriously ill travelling to Phoenix, did not have a clue about what was afflicting him and the catastrophic chain of events that were about to change his life. That person, sadly (and gladly, in terms of the new perspective I now have on life) no longer exists.
I was frustrated by the loss of my previous self – but I am certain that my frustration with the Scottish Hospital related to the fact that my professional alarms were set off by the amount of poor practice I experienced, rather than the difficulties I experienced coming to terms with what I was going through. But, you can judge for yourself, here, whether the way I was treated, for example at discharged, was acceptable.
My frustrations continued until after five or so days, at around 10.00 a.m. on the 7th of May, a new consultant appeared, examined me and told me I was OK to leave. I asked him about plans for follow up, rehab and discharge but, just like the first consultant, he sloped off without giving me anymore information.
The previous surgeon had said that I would be seen by a plastics specialist before discharge – this assessment never materialised (it would be 6 months before I saw a plastic surgeon and then it turned out I needed to see a urology specialist for advice on what areas of tissue had been removed, what rehab was required and what my long term impairments would be).
On the 7th of May, no advice was offered on post discharge care, nor was information provided on all the swabs that had been taken off me and sent away to the labs to see if I still had any infections.
I had received so much support from the nurses, physios and OTs in the USA, it was hard to understand how I could be chuckled out of the Scottish Hospital without any further explanation, not even a sheet on how to build myself up with exercises.
As I write this, I have just seen people with symptoms of the Corona Virus complaining that they have not had any results or heard anything more than a week after their tests were carried out. This is pretty basic stuff. Patient’s should have a right to know what happened to their blood, swabs, DNA or any other bodily matter that they have provided to the NHS. Experts with in disability studies, such as Tom Shakespeare have, for years, questions the ethics of testing regimes e.g. around DNA test ownership. Many years ago, I was lucky enough to work with Tom, who critiqued medical professionals who showed a disregard for the rights of patients .
In basic terms, there is an arrogance in the procedural way that some health testing processes work. Medics and health service managers, sometimes, fail to take the public with them when they set up diagnostic processes and this results in a loss of trust with the public. A loss of trust also occurs when public service staff develop new health approaches as a side line to their job and these new drugs, procedures and equipment from this moonlighting is then sold back to the public sector at exploitative rates. In essence, we have paid for their training, there time to develop their new product and they are exploiting the security of their full time NHS posts to make money out of the private sector (see report here on moonlighting).
In terms of the ethics of dealing with the bodily matter of patients, in children’s hospitals we have seen glaring examples of a brake down in trust, when medical professionals have not behaved ethically with the remains of loved ones (see for example the Alder Hey scandle). It is important that medical professionals and health service managers that plan testing process understand that when they take away a piece of you for testing, no matter how small, that is a profoundly personal act and you have a right, and need, to know what happened to that test. There is no excuse for losing tests, failing to process testes and for failing to report results.
In Alder Hey autopsies were not properly carried out by Dick van Velzen over a 7 year period and parents never learnt how their loved ones had died. The mismanagement of testing related to the Corona Virus suggests that the Tory Health minister has learned nothing from the Alder Hey scandal, nor the Hillsborough scandal (where relatives fought for decades for the facts on their loved ones deaths to be accurately recorded).
Throughout the Corona Virus crisis, inadequate testing has meant that many relatives remain unsure as to what caused their loved one’s deaths. Serial miss reporting of figures, an inability to produce accurate tests, a lack of speedy development of testing centres, a centralised approach to centres, a failure to test early enough, a reliance on private sector postal returns, and a failure to properly track the infections does not fill us with hope that the UK government is on top of this and that an end to the virus is near at hand.
In fact, this is one of the most basic things that a health service is supposed to be able to do. When the English health minister blames a failure to produce test reports on the very private postal service they created, you know you are 3.0 down going into injury time and wondering why the manager has not made any substitutions. We are back to the Thatcher era where ministers and prime-ministerial aids hang on for grim death (no pun or offence intended) to their jobs in the face of public outcry.
The test, track, and trace process should have been local, in house, involved primary care and not been placed at the mercy of a privatised mail supplier. We should have all, by now, been provided with an accurate anti-body tests so we could work out if we had the virus (e.g. when we got that dodgy flue between December and February). It is unacceptable that we are now in June and being asked to go back to work and play Russian roulette with our health, without knowing if we have had the virus. Reports suggest that a Swiss firm, Roche, has developed a 100% curate antibody blood test that is in use in the USA. But of course, the UK government ordered 3.5 million tests from another source – that do not work (typical). So we are currently waiting to see if the yet another vague promise from the English health minister is going to come to fruition. Very frustrating and, I am afraid, par for the course for the incompetent UK government.
It is a demonstration of the extent to which local funding has been cut that many of the local solutions to Corona Virus test, tracking and tracing that should have been possible – simply could not be auctioned quick enough nor efficiently enough – when they were most needed. The privatisation, reduction and obliteration of so many of our local services has to be addressed as we go forward.
The male, hierarchical centralised, Etonian posh boy approach to the virus has patently failed. With the UK having the highest death rates in the western world (outside of the USA which is an even more unequal, divisive and disorganised shitshow than us). As mentioned in an earlier article, if gives me no pleasure to report that Scotland has a lot less deaths proportionately than England.
The lack of support for key workers, who have sacrificed their lives at the alter of this incompetent Tory government, has been atrocious as has the English health secretaries complete inability to explain what solutions are required for the fact that so many more black and minority ethnic workers have died compared to white workers. Without a proper explanation, we do not know where to start to rectify this patent injustice.
Where to start on m,y rehab was a big issue and had it not been for the staff in the USA, I would not have known where to start on my rehab. My major fear was that I would undo the work of the plastic surgeon by, in a very rugby player type way, over doing it. On returning to Scotland, I had found out that I was only going to receive 2 months sick leave from my work because I had only just moved jobs and had lost my right to maximum sick leave.
I found that situation a bit unfair because, leading up to my hospitalisation, I had worked in the Scottish University system for 21 years of my career, 18 years in succession. But, my rights to six months sick leave full time and six months part-time did not transfer with me when I moved from one Scottish University to another.
My head of School was extremely supportive and found a way to ensure I had at least till the end of July before I started back to work. But, I knew I had to get myself into some kind of rehab programme if I was going to make that 12 week deadline. Hence, I am extremely sympathetic to the people during the Corona Virus who have not had the support they require from the government, such as young adults, the self-employed, those in the creative industries and/or those on zero hours contracts (see report here)
There were several problems getting me out of the Scottish hospital that related to lack of training, cuts and staff issues. The first was no transport. That would take 3 to 4 days to book, said the nasty nurse – almost gleefully. My wife said to the nasty nurse, ‘How do you expect me to get him home’. She said, ‘Huv you got a car?. My wife replied, ‘yes but he can’t sit.’ Her response was, ‘give it a try’. I knew I had to get out of the place before I got re-infected, so our only option was to try the boot of the car with the rear passenger seats flattened down. My wife was changing most of my dressings anyway, so there was no reason to stay in the danger zone of a hospital with an above average infection rate.
The nasty nurse left with a comment that it wouldn’t take too long for the drugs to arrive – this was around 11.00. It was actually about 19.00 in the evening when the pack of drugs finally arrived. I was prepared for the wait, as my mate Murray Smith, who knows a lot about the problems with our health service, had pre-warned me and I remembered a similar problem when my son was in hospital (My son’s drugs also came at 19.00 in the evening after he had been told of his discharge early morning).
Many of you who have been discharged from hospitals will be aware of this problem and the problem of having to wait hours because only certain staff can write prescriptions or there is no one available to pick up the prescription. At first, when my wife became a specialist nurse, she had to ask a doctor to write prescriptions for her patients but eventually, she did the same training courses as the doctors and became the person who decided what medications the patients needed after their diagnostic operation (which she had also carried out). She passed the course to be allowed to write the prescriptions – her procedures were sped up for and less mistakes were made.
It is unbelievable, that in so many hospitals, the nursing staff are not enabled to set up systems to resolve the problems that so many patients experience when waiting for drugs to be prescribed during their stay or on discharge. Specialist trained nurses should be readily available to address the gaps in the process.
The fact that I was lucky enough to be pre-warned and reminded by me friend that I needed to be patient meant that I just had to construct a very zen time were a calmly waited out the process, listening to my music,. From time to time, staff came in to check if I not gone yet, as they needed the room. The nasty nurse’s misinformation about when the drugs would come, links back to Cousin Dimiti’s advice in an early article that warned us, during a crisis, not to believe the rumours people tell you.
Whilst I was waiting for the drugs someone finally sent in a junior doctor to explain what I should do at home in terms of how many more weeks I had to stay flat and when the stitches should come out.
This doctor was one of the few nice people I encountered in the hospital who had regularly come in to take my bloods and had chatted about her experiences as a doctor. She had intonation that she was not impressed by her placements in hospitals and would be working in primary care in the longer term.
When she came in, She said that the surgeon had said not to follow the advice in the notes from the American surgeon. She said that I should start the sitting up process much earlier but gave little advice on what to do to achieve that outcome. I had raised questions about exercises, physio, rehab, etc, but no information was forth coming.
I looked at my wife who shook her head in dismay. I lost it at that point. I apologised to the doctor for the fact that she was one of the few people who had treated me like a human being during my stay and repeatedly said, ‘I know I should not be fucking swearing at you, and this is like shooting the messenger, and none of the senior fucking guys had the guts to say that to me, and sent you in here knowing they had not answered my queries. What else can I do, but fucking swear, to show you guys how fucking unacceptable and confusing this is’? The team in the USA were adamant that I should ignore anyone who told me to change the sitting up date. The plastic surgeon specifically told me that the internal stitching would not knit correctly for over 6 weeks weeks post op. I, specifically, remember the conversation because I ask him to repeat himself because the idea that I would not have a quick recovery and I would have to lie flat for 6 weeks was such a disappointment to me. It took me ages to get my head around that fact and know you are messing with my head is such a way that I have no confidence in any medics any more.’
I continued through gritted teeth, ‘‘I have been in this fucking hospital for five fucking days and the level of care and communication has been fucking atrocious. I realise that I am now fucking shooting the fucking messenger but I am not fucking going till you get those fucking cowboys you fucking work with to fucking show me a fucking plastic surgeon who is willing to fucking confirm what you just fucking said.’ After that outburst, I, once again, apologised for my language and calmed down.
She apologised for my experience in the hospital in a way that showed the situation was not up to her liking either. Her supportive approach made me feel like I was a right bully. There is a fine line between fighting for your rights and impinging on the rights of others and I felt I was way over the line. She said she would go and get a second opinion and that if she couldn’t get a second option in this hospital, then she would phone a plastic surgeon in another hospital.
She came back within an hour and said that the American rehab regime was to stand and she was sorry they had confused things. I apologised again for swearing and again reiterated how unfair it was that I should swear at her, when she was one of the few decent people in the hospital.
I also said that I greatly appreciated the exceptional way that she had stayed calm, listen to my rant and found a way to resolve the situation. I said that her approach demonstrated how unlike the consultants she was, that she was a better person than me and that, if it did not sound too patronising, she should hang onto that ability as she went forward in her career and never become as bitter as the consultants nor me.
So the lesson here, is that even though I was acting irresponsibly, swearing and losing my cool, this doctor understood something had gone wrong on their side and went and fixed it. She accepted my apology and attended to my right to have clear instructions. I have seen such processes from the other side, and often doctors fall into a process of defensive medicine,. So, there was just a chance she spoke to someone who said, ‘look if we change the regime and something goes wrong we leave our selves open’. But, hopefully, the reason they stuck with the American advice is because it was the correct set of advice.
Finally, the drugs arrived and it was time to go, I had put on my drag gear (stockings, socks and basque described in an earlier article) to ensure the blood pressure did not give me any problems and my wife parked the car outside of the hospital entrance. The distance I had to walk was longer than I had ever done in the USA and though I had been walking round my room for about ten minutes twice a day (a bit like that prisoner movie Papillion) I was less than confident in my ability to make it to the car (at that stage there wasn’t even the offer of sticks or a stroller).
I was particularly, concerned about having to go down a couple of floors in a lift. Ever since my operations I had always been on a trolley, lying flat out, when going up or down in a lift. So I had no idea what the effect would be when standing up. Just as we were leaving one of the staff brought a wheel chair for me to sit in. I didn’t have the heart to tell them I couldn’t sit, so I said, ‘Oh thanks so much!’. They were a bit confused when my wife used it for the bag of stuff we were leaving with (which included wipes, pads, drugs, t-shirts, toiletries, etc) and I simply latched on to the back of the chair with my wife following me closely.
The chair took my weight while we were waiting for the lift. My wife had brought an old pair of baggy tracksuit bottoms that were 2 sizes too big for me and It felt a bit weird standing there reminiscing about the music of MC Hammer and Madness. Then an old Irish song, with a line about going home, came to mind so I whistled to myself in the lift to mark my resistance to this experience and in celebration that I had soldiered my way through the experience and was about to escape before they could do any more damage to me.
Other than a little queasiness, the lift journey tuned out to be OK. About half way to the car my wife went ahead to open up the doors. It is not much fun walking on your own, no staff members to keep an eye, when you can’t trust your own blood pressure. I am pretty sure the staff in the USA would not have let me leave their ward in such an unaccompanied way. I had to rest on the chair, again, when I got tired on my way to the front entrance and again, along the slope up to where the car was parked. The slope quickly reminded me I had little strength available in my legs. It was the first time in weeks that I had encountered a slope
Having been in an overwarm hospital environment for too long, the Scottish cool air was just amazing when it hit me. It cleared the head and was like that feeling you got as a child when you had been late at your grandparents and, to the sleepy echo of the dragging hinges of the wooden tenement close door, you stepped out under a starry, chilly, but, invigorating, night’s sky. There was, indeed, a childlike freshness to the breeze that evening.
The fresh air helped clear my mind and to work out the krypton factor question of how to get me into the car without bending and without splitting the stitches. When trying to work out how to drop into the boot of the car, I said a little prayer of thanks to the USA physios who had given me tips about the best way to move.
It turned out that the edge of the car looked to be just the right height for me to put my arms sideways over my head like a diver, pivot sideways, and fall into the boot as the ledge knocked my legs away. All I had to do, to make the manoeuvre work, was duck my head at the appropriate moment, so that my head missed the top of the opening. Whilst I discussed this with my wife, it dawned on me that she was about to give up because she thought the manoeuvre too dangerous. I realised that she did not have the same confidence as me because she left the USA ten days before me, and had missed the progress that I had made with the wonderful physios.
Hence, I had to pause for a minute and explain the different options and the rules of thumb the physios had given me, such as doing a ‘plank’ like shape to avoid my midriff collapsing, not twisting mid manoeuvre, taking my weight with my arms to move when flat and sliding rather than rolling.
Landing in the car on the area of my hip that had, previously, had a drain in it, was not so great. But, at least I was in the car, even if, my legs, from my knee down, were sticking out the boot. My wife had liberally scattered all the cushions and pillows that we owned about the flattened surface of the car. Once down on my side, in the boot, the pain hit me.
I quickly used my arms to turn on my front and grabbed what I could above me to slide myself, face first, forward into the body of the car. Eventually, my feet joined the rest of my body in the car and my wife was able to close the boot – to the sound of more yelps, as the suspension bounced me up and down. My wife fitted the seatbelt to me, as best she could, whilst I tried to recover from the shock of it all.
I, gradually, got my breathing under control and for a few minutes I felt OK. But, I could tell that we needed to get going, because the pressure of my weight would soon increase the pain to the point where it became unbearable. Little did I know that the pain would be racked up just moments after we left the hospital when we hit a series of speed bumps. I don’t know how many speeds bumps there are on that road that leads up to that hospital, but, some urban planner needs to catch a grip of him or herself.
It was about 20 minutes of total agony until we eventually reached the motor way. My body could only take a speed of about 40 miles an hour on the motorway and it took us 18 minutes to get to the turn off for our new home. About 7 minutes later, including the joy of travelling for 5 minutes on a non-listed farm road, I arrived, at my new home. By the time we got home my wife was dreading what might have happened to my wounds and had tears running down her face from the nervous exhaustion of it all.
I did not cover myself in glory on the way home. First complaining about the route we were going (which from my angle looked to be south not north), then shouting about the need to check the speed back and then shrieking every time my wife applied the brakes. The journey home was awful for both of us. You would not have forced an animal to go through that, indeed I suspect there are EU rules that give animals more protection than Scottish hospital patients when being moved.
But that’s what happens when you devolve power to a management class who make their bonuses out of fucking up and fragmenting NHS transport systems. That’s the same management class who focused so much on cutting budgets they failed to prepare properly for the Corona Virus and had to supply staff with out of date equipment. Many of the Scottish managers came to NHS trusts in Scotland from England – it is a sad world were you think it’s a good thing to import manager from system focused on privatisation. We should not be employing managers from health systems that have fostered so much inequality that their staff are now dying at wholly inexcusable and disproportionate rates.
The main problem with health and social care transport is that it is not a statutory provision and, therefore, can easily be cut by unthinking managers. As this report sets out:
Given current financial pressures there is a risk that public bodies will reduce services which they do not have a statutory duty to provide. This makes it more important that organisations work together to make the best use of transport resources in the local area and ensure that services are available for everyone who needs them. This is particularly important for transport for health and social care, as services are fragmented across a number of bodies and there is a risk that people are left without support…. Disabled people and older people are not given enough influence over how transport to health and social care facilities works to tackle any difficulties they experience…..
The hospital that I returned to failed to follow this 2011 guidance provided by Audit Scotland and a 2019 report found that 98% of the nearly 850 patients with disabilities that responded to a survey concerning transport stated they faced transport barriers:
There is growing concerns amongst disabled people and older people in relation to the transport barriers accessing Health and Social Care appointments and facilities (this is evidenced in the second Disability Equality Scotland (DES) Poll run in August 2019, which attracted a much higher return rate than the initial poll, 849 people responded with 98 per cent of those responding stating that they faced transport barriers accessing health and social care appointments….
…. I thought the ambulance service were responsible for transport to hospital then I was told it was a local authority responsibility then told it was the health board. This was when I was trying to book transport so no wonder the system is a mess. Nobody has the answers or cares.
These findings suggests that disabled people are routinely failed by health and social care transport systems – which in 2011 were described as fragmented and in 2019 appear to be just as bad or worse. I had heard rumours, from disabled friends, that you could no longer actually get transport because they had made the systems so difficult to book and because the system had become rigid and inflexible e.g. they prevent you taking a carer with you on the transport.
My, ‘from Learjet – to lugging your self oot o’ the guts o’ a car boot’ experience may demonstrate the worst of extremes, but, the 2019 report shows that my experience is not a one off, sadly, it is the norm.
It is clear to me that the Scottish Hospital failed in their duty to provide me with a service that took account of my disability. Telling a disabled patient that you have to wait 4 or 5 days for transport – is discrimination, and, as the quote above states suggests to patients that the NHS did not give a toss about their welfare. The nasty nurse, could not have cared less for my welfare.
My experience begs the question, how many patients caught the Corona Virus in hospital or social care settings because they were waiting 4 or 5 days for transport to take them to a safer place e.g. their own home or a home of a relative?
The transport report also shows that vulnerable patients are forced onto public transport when the local transport service does not turn up and to sit in impersonal and cold transport waiting areas, for hours, waiting on transport that sometimes does not come. In rural areas some patients explained that the expense of travelling to hospital when the local transport service let them down, meant that they had to skip meals. When you already have an underlying health condition that experience is unforgivable.
It is totally unacceptable and with the exception of the Green Party, this sorrowful state of affairs can be laid at the door of almost all the main political parties in Scotland. The council area that the Hospital was in was run by the Labour party for decades, it is now a SNP/Labour power sharing council. The cuts that led to reduced transport services were imposed because of Tory and Tory/Liberal austerity that led Westminster to reduce the Scottish budget. The SNP government is at fault for not holding to account ineffective Labour councils and for not sufficiently challenging the fragmented transport structures enabled by the Labour and Labour/Liberal Holyrood governments that preceded the SNP.
Once home, we still had to work out how to get me out of the car. I said to my wife, ‘We have to find a way to move my feet out of the boot. I needed to slide out until my head will miss the roof ledge and I can then do the reverse pivot and flip up onto my feet and maybe you can catch me – if I start to go over or down?
How to get my feet out of the car without bending was the key thing. Then it came to me, what about my suitcase with wheels? It was near at hand, because it had stayed with me the whole time I was in hospital and had come back with me on the Lear Jet and now the front seat of the car. Whilst in Phoenix I had looked at that suit case in a way that bemoaned its uselessness. Day after day, it had caught my eye standing in the corner of hospital room in Phoenix and I wondered if I would may be need the suit case if I went to a convalescence home for my rehab (rather than being flown home to Phoenix).
The suitcase still had all my unused clothes in it that I had taken with me to the USA for what should have been a three week trip. This meant that it had a good weight about it and would not collapse on me. So, I slid myself face down and backwards out of the boot until my toes hit the suitcase which was just the right height to take the weight of my legs and then my wife slowly rolled the suitcase away from the car, whilst I grabbed onto anything I could and slide my hips passed the lock of the boot, until I was, eventually, able to flip up and out of the car. I am still , to this day, amazed by the fact that we got me home in one piece.
The picture here, shows me feeling very proud of myself, if completely knackered.
The Peter Gabriel song ‘Don’t Give Up’ (ft. Kate Bush) – kind of captures the dreamy, surreal and unreal nature of my discharge experience.
In this proud land we grew up strong
We were wanted all along
I was taught to fight, taught to win
I never thought I could fail
No fight left or so it seems
I am a man whose dreams have all deserted
I’ve changed my face, I’ve changed my name…
Though I saw it all around
Never thought that I could be affected
Thought that we’d be last to go
It is so strange the way things turn
Drove the night toward my home
The place that I was born, on the lakeside…
Don’t give up, ’cause somewhere there’s a place where we belong
After the photo, I turned around to experience the total sensory overload of the beautiful Garden. I had not seen the garden since we had viewed the property in early January – when the weather was fairly bleak.
The blossom on the cherry trees was wonderful; it was as if the Celtic goddess of nature, who had kept me alive during those pain swilled and delirious moments of that first week in hospital in the USA, was celebrating my release with all she had. The wind in the trees spoke to me of how spring would soon be over and the blossom would soon be gone – hence, I so appreciated the fact that I had not missed that sight of the beautiful blossom on the trees.
Beyond the trees I could see the shining waters of lough Levin and the Hills that border the counties of Kinross and Fife (the county where I, myself, was born so many years before). I knew I was finally home.
I captured the moment in a short poem:
The Cherry blossoms of home
Sudden tears of joy,
The Cherry blossoms of home
Mark my journeys end.
I, briefly, cried to be back outside in my beloved homeland. I cried with happiness that so many people had contributed to this moment and I cried because. I knew in myself. that this moment marked only the end of the beginning. There would be many more frustrating days ahead.
Many thanks again for reading this article which has used my experience to critique the discharge experiences of disabled people in Scottish Hospitals and the terrible state of affairs that the austerity cuts have brought to our need for decent and locally accountable testing, tracking and tracing. Tune in next time for Article 12 Come Home which will explain how the reality, that I had ‘come home’, hit me.
You have been reading an article from the Don’t Let Me Die In Phoenix Series. Follow the links below to access the other articles in this series.