I had paid just under £80 pounds for LV holiday insurance, the best money we have ever spent in my life and I was very privileged to have experienced such a high level of hospital care. In the early days of the process it took quite a few days to find out that I was going to be covered by the insurance and that my predicament could not be pinned on a pre-existing medical condition.
This process involved my wife having to answer lots of questions on the phone and the insurance company receiving information from the hospital in the USA about the nature of my health issues. Once the insurance company accepted responsibility, they appointed a sub-contracted medevac company to communicate with us. Unfortunately, the medivac company were not very good at getting into contact with us and updating us on what our insurance covered in terms of transport and accommodation for my wife and what the plans were for getting me home.
The subcontracted company kept shifting the goal posts, saying they would call at specific times then not calling. They also suggested they would do stuff which they did not e.g. like cancelling/rearranging my wife’s flights home. Some of the problems were concerned with the time difference e.g. staff were often available to speak to when we were asleep.
In the end, my close friend from Penn State University, Mark Brennen helped my wife with the process of re-arranging and cancelling our US internal flights and my wife negotiated a rescheduling of her own flights home. In particular, the medevac company kept blaming the hospital in the USA for not providing them with information. We had an exceptional US Hospital manager called Vanessa who liaised with us, kept us informed, dropped by almost daily and could not do enough for us. The professionals in the UK often blamed the hospital staff in the USA for a lack of progress – we knew where the problems lay and it was not with staff in the USA.
One small issue that scuppered the insurance company was that Americans write dates different to us – so my date of admission was 5/4/19 in the UK and 4/5/19 in the USA (this small difference set the repatriation process back a lot because the UK folks kept mixing up dates and the needed the right dates to access the correct information about my case).
My wife and I do a lot of work face to face with service users. We have done thousands of consultations and interviews in our careers. Within about three questions, we can work out if a person is economical with the truth in relation to a health service issue. The staff in the UK treated us like we had never worked in hospitals. Rather than reduce stress on my wife, they added to my wife’s stress levels and in so doing, they failed at their jobs.
A couple of times, despite having difficulties speaking on the phone, I phoned the medevac people to ask for updates. Each time I tried to get them to be specific, they were evasive, changed the conversation to ask how I was, started telling me how I felt, ‘it must be very hard for you’ and then intimated that my frustration was understandable. Their approach was to make out my frustrations were about my impairments and nothing to do with their lack of communication.
They also kept asking me if I wanted to be put through to someone who would log my complaint. I kept saying, ‘Who mentioned complaining, I am not complaining, I am asking what progress there has been, If there has been no progress, just tell me that, and, I will hang up.’ Parents of disabled children will tell you that nothing winds them up more than patronising service providers who won’t be straight up about why there has been a delay in following through on an agreed course of action.
These parents have a basic message. They should not have to waste energy investing in processes that lead them up a path, only to let them down at the end of the arduous journey. My view, which I have held for many years, is that it is professional to say we don’t know and perverse to make promises you know you will never deliver on.
There are links between the, ‘it must be so hard for you’ approach and ‘trauma’ kidology. Deficit models concerning trauma represent the ‘patient’ as incapable due to their impairments. The patient’s concerns e.g. about being misinformed or mistreated, are ignored and defined as ‘stemming from their impairment. As such, the professional avoids having to take a look at their own practice and their own inadequacies as a reason for the patient’s frustrations. Deficit approaches to patients neuter the patient’s everyday right to be listened to, to be seen as a capable agent and to have their life issues address on their terms. Deficit thinking fakes listening, ‘would you like to be put through to someone who will log your complaint’ and deflects patient’s questions rather than responding to patient’s complaints in a timely fashion.
If you are addicted to trauma kidology, you see the person presenting to you as abnormal and broken. You get caught up in your own self-importance, as the person who can make decisions about them, rather than the person who should empathise and make decisions with them. I wasn’t getting frustrated because of my impairments. I was frustrated because my professional instinct was screaming, ‘who are these cowboys’.
You should never treat a patient as a person you can lie to, dismiss, ignore or stonewall. I got sick of hearing the phrase, ‘You poor thing, you have been through a lot, it must be difficult.’ from people who were making our lives more difficult. It is ok to cut someone a break because they have experienced a traumatic time, like the nursing assistant I mentioned in an earlier post who cut me some slack when I complained about what she was doing to me. That nursing assistant concluded that she was not seeing my best side because, ‘I had been through a lot’. That nursing assistant showed empathy and understanding for my experience, the insurance person faked sympathy to distract the conversation away from her organisations inadequacies.
It is not OK to make out that you care about a person’s feelings, so that you can avoid taking responsibility for your own inadequacies and then string that person along in a way that worsens the things that they are going through. This is one of my greatest concern about professionals who are addicted to trauma kidology – they appear unable to recognise that they themselves, their professional inadequacies, may actually be the cause of trauma that the people that they are patronising are experiencing.
In my case, last year, my sense of isolation increased because the insurance company kept me in the dark and this feeling got worse when, eventually, my wife had to return to Scotland to sort out legal stuff and move our possessions into our new home. These day were, like this song by Carson McHone – ‘Don’t You Think I Feel It Too’ states, very blue days indeed:
We had had an offer accepted on a new place prior to going on holiday and our belongings were split between a rental place near Dunblane and storage in Edinburgh. It also looked to me like my wife would benefit from being home amongst our friends and family. Indeed, I was aware that my wife also might be worried about how long she had been away from her mother who experiences dementia.
My wife returned to the UK on the 23rd of April the day after Billy McNeal died (the 22nd was also the last day she visited me in hospital) . The medivac company gave me the run around for a further 10 days or so. What I did not realise, until my wife left, was how much I resented being left on my own in the USA. The sense of abandonment took a lot of getting used to and, in some way still lingers in me.
In retrospect, we could have employed a company to move our possessions and my wife could have stayed or I could have taken the opportunity to accept the help offered by friends who had suggested they would fly to phoenix to spend time with me. I think the reason I did not want friends to come out to Phoenix was because it would jolt me out of the calm place I was in. As long as I was out of my usual routine I did not have to confront the emotionality of what I was going through. Indeed, when I was younger I learnt that in the worst life moments it is sometimes better to learn to cope with change without constant triggers of what life used to be like.
The problem, with the ‘do not confront me with the real world’ approach ,was that it left me isolated and alone in the USA. I was very lucky that the staff were so good to me. The physios, in particular, sensed I was struggling with my wife’s return to Scotland and were incredibly kind to me.
One of the funniest events I encountered occurred when two excellent physios decided it was time to teach me how to get out of the hospital bed on my own. I fell in love with these two specific physios because they always focused on my abilities and planned well in advance for eventualities that I could only dream of. They felt like guardian angels who were always thinking ahead for me and, in doing so, always were making sure I realised I had a future. I would spend each day praying they had been given my name on their rotas and when they turned up they brought such joy into my bleak existence.
One day they came in and explained that at some point I would go out to a rehab place/nursing home or be flown back to Scotland and eventually I would be home. Their conclusion was that we had to give up the tilt table; find a way of stabilising my blood pressure; and work out how I would get out of bed without tearing the wound inside nor out.
They had a discussion with senior nurses on the ward and their first solution was to provide me with a pair of white stockings that would support the blood pressure in my legs. Then, I was given a pair of string pants to keep my chucks from falling off (that’s the American Chucks that acted as a kind of diaper/nappy – not the Scottish chucks which I was glad were still attached to me). Then, I was supplied a white basque like corset for around my waste and mid drift to ensure the blood kept moving up towards my head.
I am happy to report that during this process I broke into a rendition of ‘Where do I begin’ from Love Story and let the inner Shirley Bassey drag queen go.
The chat was toptastic and went along the lines of , ‘So you wait till my wife goes back to Scotland to bring the basque out. I’m not sure I’ll be telling her about this?’ The physios followed up by saying that they had a bed in their office and they had both been trying different positions to see how they worked. I replied, ‘Different bed-positions? Now whatever you get up to in your own time is up to you guys – but I am presently indisposed for that type of activity.’
After the laughter and hilarity had died down, we had a serious think about the ‘positions’ that the physios had suggested and I concluded, ‘So it is a sort of hang onto the side rail and then it is a sliding ‘ally-oop’ like a gymnast coming off a vault, yoke of a thing’. It took me about 4 motions toward the side rails to get the courage up to do the ally-oop but in the end it worked and I was on my feet with surprisingly few blood pressure problems, The drag costume seemed to be working.
Usually, when walking, I would get some signals I needed to go back to the bed. These involved a slight lightheadedness or my breathing changing. I did a couple of shaky laps of the ward with the very likeable male nurse I mentioned in previous articles, who gave me incredible support throughout my time in hospital. Indeed, he was the first person to instil in me the belief that I could, actually, learn to walk again (this is the nurse I described in previous posts as having experience of disability). The journey involved the nurse supporting me by holding a safety belt that went round my waste.
When we noticed that my breathing was shortening, we headed back to my room to have enough time to wash a little before I zonked out. During the process I said to the nurse, I think we have about 5 minutes. Which was a spot on calculation. I came out of the shower room just when I felt the need to lie down – only problem was, no tilt table and we had not worked out how to do the reverse ally-oop.
I turned to the nurse to say, ‘Remind me what the physios said about getting back into bed’ and didn’t finish the sentence. At some point in the process my mind realised I didn’t have the energy to work out how to get back into the bed and gave up trying. I woke up about half way down with the nurse gently tilting me back on my heels with his hands griping my shoulders and the waist-belt till I reached the floor. I was reminded of this episode months later when Mikaela Finne released the Townes Van Zandt song No Place to Fall – which has the line, If I had no place to fall, And I needed to, Could I count on you, To lay me down:
I was fairly comfortable resting on the floor. It was this nurse’s last day on the ward before he moved to train as a specialist at another hospital. What a way to go out! His quick witted response saved me from undoing all the good work of the surgery and was a very clear example of how good he was at his job. He had no hard feelings and even shared a piece of his leaving cake with me – which was delicious (and, from memory, I think he baked the cake himself).
When I played rugby, and in a very male way, I had prided myself on never being knocked to the canvas no matter how hard anyone punched me. I had used that ‘tough man’ persona to explain to myself how I had not ended up on the floor during my first collapse episode. But, that claim, to have never been knocked to the canvas, had now been taken away from me. This collapse stripped away the last remaining vestige of my rugby-male vanity and taught me a good lesson.
It taught me that, I was no better or worse than anyone else. Under the right circumstance, I would pass out and hit the canvas, just as anyone else would. After a brief period of mourning for the loss of my never previously dropped to the canvas record, I concluded there was something very uplifting about this experience. It was as if my life lesson to be drawn out of the collapse was to keep my mouth shut, be less male and concentrate more on the detail. I greatly enjoyed the imperfection of the moment. It took 6 nurses with boards to lift me back on the bed. Which they did very carefully. And, rest assured, I am eternally grateful to the nurse who, so gently, saved me.
It was welcome news and I was very appreciative when finally I learned that I would be flown home. I also was shocked to hear that I was being flown home on a Lear Jet because I had to be kept flat and could not fit onto the commercial flights going back to the UK from Pheonix.
Late evening on the 4 or 5th of May (you lose a day during the trip), I was taken by paramedics to the airport in Pheonix and then travelled to Omaha (where they refuelled). Next leg moved me onto Ontario where we changed crew and planes (I am pictured above being taken out of the US plane) and then on to Edinburgh via two refuelling stops in Duck Bay Newfoundland and Reykjavik, Iceland.
The planes were amazing. Incredibly manoeuvrable, fairly comfortable and landing was very exciting, they just swooped down in a tight turn doing angles a commercial jumbo could only dream of.
On arriving late evening I truly appreciated that, as this song says, there is no place like home: Jessie Buckley – Glasgow (No Place Like Home) (From “Wild Rose”)
I advised the Canadian crew of some good spots to go to on their night out in Edinburgh, bemoaned the fact I couldn’t show them around and began to say my goodbyes. But, there was a lot of confusion on the runway in Edinburgh.
The Canadian team, at the instructions of the less than competent medivac people, phoned Ninewells Hospital in Dundee and Ninewells said they had never heard of me. I said to the Canadian team that the medevac people had earlier mentioned another Scottish hospital that I have chosen to keep anonymous because it is unfair to name and shame them at this time. It turned out the second hospital was expecting me.
I was handed over on the runway to two Glaswegian paramedics whom, as well as conveying patients like me on the last leg of their journey to NHS provision, also worked on mountain rescue and EU repatriation cases. The two Scots paramedics were great guys but they that no idea where the hospital was.
That out of world experience on the runway, of being the one person least capable of working stuff out but the only one who had a clue where we were going, kind of set the tone for the next few days. And, in that moment we are taught, as the Sarah Jarosz song teaches us and lots of the events I went through in the USA taught me (including the drain removal experience), we need to beware of what we wish for:
Johnny’s on the back porch
Drinkin’ red wine
He knows that it could be
The very last time
He raises the glass up
To his lips
How could a boy
From a little bay town
Grow up to be a man
Fly the whole world round
And end back up
On the same damn ground
You might not get what you paid for
You know that nothin’s for sure
And an open heart looks
A lot like the wilderness
Lately, he’s been thinkin’
‘Bout the meanin’ of time
The small amount we’re given
Must be some sort of crime
Yet the little we have
Feels like too much
Most of the time
He takes another sip
Of that blood-red wine
Just waitin’ on the stars
That will never align
A little luck
A little love
A little light
And you’ll be doin’ just fine
You might not get what you paid for
You know that nothin’s for sure
And an open heart looks
A lot like the wilderness
So open up your heart
Take it out
And put it back in
Signs are all around you
Let it begin
You might not get what you paid for
You know that nothin’s for sure
And an open heart looks
A lot like the wilderness
You might not get what you paid for
You know that nothin’s for sure
And an open heart looks
A lot like the wilderness
Arriving in the NHS Hospital in Scotland I immediately noticed the staff ratios were different to the US hospital. Now, having a loved one who works in the NHS, I am reticent to slag NHS provision off and was willing to keep an open mind. But the nicest thing that I can say about this Scottish hospital is that my wife thought the way they treated me was appalling.
I arrived into an acute receiving unit for assessment and was immediately told to stop telling them what to do (I was merely answering their questions). The general tone was, ‘We will make our own minds up and we do things different here to America’. I lost track of the amount of staff that got huffy when they found out I couldn’t sit on a toilet. I was constructed as a naughty boy who didn’t know how to use the toilet and when I said the surgeons have told me not to bend nor to stand and push in case I split the stitches, I was not believed.
Some of my ‘leaving’ drugs, which I had had to pay for from a pharmacy in the USA were ‘removed’ when I was asleep (One of the hospital managers or Jean went to collect them for me in her own break time). Which meant I spent a whole night and most of the next day without any medication, in unbelievable pain, as my body began to react to the withdrawal from some heavy duty drugs. One of the drugs I was on, Gabapentin, was known to have severe withdrawal side effects such as sweating, dizziness, headaches, insomnia and muscle pain. So it was not clever to suddenly remove it from my system.
The impact of travelling by plane, and then ambulance had also taken its toll on my system. And, I was prevented from continuing my walking regime, which took my mind off the pain, because, coming from a hospital outside of the UK, I was considered to be an infection risk to other patients and was isolated in a separate room
My experience without drugs in this hospital, demonstrated a longer term problem, how to get off the pain killers which I would have to confront in time. My body and mind could not face the ‘neural’ pain that I was still experiencing. And this song by Carson McHone called Drugs. Pretty much summed up the state I was in when they took the drugs away:
They’re not enough
I, I can’t sleep hungry
I need drugs
I need drugs, I need drugs
I need drugs, I need drugs
I need drugs
The lack of drugs, for the first time since the operations, meant that I was very much in touch again with my feelings and the reality of what I had been through started to sink in. My more critical mind awoke and I started to notice things that were not quite right in terms of my treatment e.g. the infection control procedures seemed to be being completely ignored by the staff.
I might have accepted the isolation as a sensible thing, had the staff’s attempts at infection control been better. There were people coming in and out the room all the time who clearly did not know the basics of infection control and were transferring stuff that should have been destroyed, binned or disinfected.
Had I still been infected, I have no doubt they would have transferred the infection. This told me that either they were incredibly poor at their jobs, or, no one on the ward actually thought I was an infection risk.
If the latter is true then the isolation need not have occurred, If the former is true, writing this in the context of the current crisis, I have great concerns about what might be going in hospitals. I am reticent to raise these issues at this time of the Corona Virus where we have to support our front line workers but it could be the case that the transfer of elderly patients and the Corona Virus into residential care has something to do with such poor infection control practice.
I looked up the stats for the Hospital I was in. Their accounts routinely come in under spent; if you cut staff to the bone, you will meet performance targets for budgets but provide a lousy level of care. Someone, somewhere, probably gets a bonus for ensuring patients do not get the care they require but that the trust under spends. They also have an infection rate that is above the national average for a hospital their size.
In my time in Hospital in Scotland, there were two nurses, two nursing assistants and a male cleaner who were excellent. One of the nurses was actually a trainee but she listened to my explanation of the best way to change the dressing to reduce my pain and did it perfectly every time. There was another nurse (who was on the night shift) who I felt was keeping me clean enough that the wound wouldn’t get infected.
But, at one stage, I did not have my dressing changed between 16.00 in the evening and 0600 in the morning (due to staff members being off sick and no replacement cover being provided). A senior nurse, who it turned out know my wife knew, came from another part of the ward, took one look at me and read the riot act to the staff.
My wife was once nominated and was runner up for the UK nurse of the year award. The team she works with won a Scottish nursing team of the year award. I say these things not to brag, but I think my wife’s reputation placed a lot of pressure on the staff in the Hospital in Scotland. The staff in the USA welcomed my wife’s expertise but the Scottish staff seemed intimidated and even irritated by it.
One of the nursing assistants referred to my wife as nursing royalty – which we both found very odd. We couldn’t, at first, understand why they wanted to put her on a pedestal. My conclusion was that many of the staff in the Scottish Hospital were aware they had dropped their standards and that by putting my wife on a pedestal they could infer that she had standards they were not meant to live up to.
There were a handful of staff who were very good at their jobs, but one senior nurse in particular consistently put my back up. For example, just as in America, the patients in the Scottish hospital could buzz when their drugs had worn off. During the staff shortages, I could hear this senior nurse (who in my head I called the nasty nurse) moaning about a patient who was buzzing fairly regularly. In fact the female patient was buzzing no more than any other patient I had experienced in the USA.
The nasty nurse told the nursing assistant, ‘go in there, ignore her, unplug the buzzer, and come straight out, the f’in Drs told her she can have those drugs every two hours and she can’t’. Whatever your frustrations with your job (and maybe this nurse had life experiences outside of work that were also effecting her) that is not the way you treat a patient.
After she had had a go at the nursing assistant about the patient who was buzzing, she came into me and started to have a go about why I thought I shouldn’t be bending. Her tone was incredibly dismissive. I didn’t put up with it. I said, ’Hold on a minute I just want you to know that I have worked in lots of different places, hospitals included, and the way you are speaking to me is no way to talk to another human being, let alone a patient.’
‘If you want me to work with you, treat me with just a modicum of respect and I’ll give you the same back. Now, if you are willing to be civil and read the notes’, she interrupt ‘ I have read the notes’, I ignored that interruption, ‘If you are willing to make a positive suggestions of how we can progress from where I am now, to where you want me to be, that’s fine, I will try and work with you. But, that discussion has to include a recognition that I have been going through this for over 30 days and have some knowledge of what works. And, that conversation has to begin from the position that I am not something on your shoe you just stood on.’
Just for a moment she was livid, but I raised my eye brows as if to say there is more of that if you want to keep going at it. She backed down and apologised. That is the thing about bullies, you have to front them up but it is very high risk to front a senior nurse up when you are in as vulnerable a place as I was.
They have a lot of options if they want to exact retribution. I couldn’t understand how I had been labelled in America as the patient who was giving of his best, constantly pushing the boundaries of what he could achieve, to then pitch up in my home country and be treated as the ‘naughty boy problem patient’.
The whole tone of the ward I was on was depressing. The drabness of the place connects to this Logan ledger song Imagining Raindrops:
I’m looking out my window
At a sunny day
But I’m imagining raindrops
And clouds of grey
I put my own feelings about my Scottish hospital experience into 4 poems called the isolation series. The Gabapentin withdrawal meant that a couple of the poems came out as very rough and I posted them on Facebook overly early in the editorial process. But it should be noted, this was probably a good thing as it enabled my friends to tease me and bring humour into the experience, at the same time as giving them a sense of what kind of incoherent pain I was going through.
I have tidied some of them up since then, into a more coherent form. One of which is here and tries to balance my dislike of the ‘Nasty’ nurse with the understanding that her lack of empathy probably owed a lot to being over worked and stressed:
It Is Hard To Catch Yir Breath When Yir Daein’ Mair Fir less:
Christina had counselled that he put the experience to good use
Analyse the care culture, look oot fae clues
Fir oor NHS’s tae improve, with vapours that sooth
Through his headphones,
The sound of piano notes came up,
Michael Neiman’s minimalist music, his mind did interrupt
With movements quite abrupt
The sound drew his attention to the dreadfulness here
From the room’s window to the floor
There was a dull repetitive echo
Nae beautiful art nor any expressive deco
Dull drab handles, On sink and door
Covered sheets, On legs and feet,
A dead veneer laid to make the ages greet
A land that time forgot
Of a big black clock, With nae tick toc,
Sat, high and lofty on the wall that brokered grey grained thoughts
Its red handed pendulum, Quickened aw the time
Tae Neiman’s parsimonious rhythm
A metronomic repetitiveness of the bleakest kind
He heard the charge nurse barking orders
Her grinding voice perfectly maligned fir her colleagues tae castigate
In a manner that courted no debate
She was the type of small c Scots woman
Who would rather irritate
Than share a smile fir tae raise a fellow human being’s gait
Her job was power, in making the minions cower
Tae control and, manipulate
Nae mind fir tae heal nor compensate
Nae sense of team work,
Mair chips on her uniform than a General first grade
What a grim, institutional facade
Slams the phone doon, ‘Yi ken the score’ – ‘Thir aw numpties oan that floor’
N’ as fir patient’s sores
‘whae said they wur tae be cherished, valued and restored’
As bitter a has been,
That’s ever run amok
For the suffering of others she just couldn’t give a fuck
As Humpty Dumpty a back shift despot and scene queen
Sarcastic performer of outdated routines
Yiv ever seen, wwillin aboot the dregs of this dire colour scheme
Deadened by mediocrity’s lost dream,
She wiz quick tae jump tae insult, injury & extreme
Aye mimicking the consultants elitist regime
For ever pushing other folks buttons behind the screens
Nae time fir snowflakes, nir other folks distress
Hardwired to the daily express
Aye forcing roond patients into square pegs
Never wondering why anyone ever voted for a Westminster cuts slugfest
Survival her only bar for success
Such pair souls, have nothing left to offer, when patient’s need their best
Reduced to fostering ‘why bother’ cultures,
N’ shouts o’ ‘who ir yi tryin’ tae impress’
All because her soul had been broken cause;
It Is Hard To Catch Yir Breath When Yir
Daein’ Mair Fir less – Daein’ mair fir less – Daein’ mair fir less
Yi just canny catch yir breath
when yir aye
Daein’ Mair Fir less – Daein’ mair fir less – Daein’ mair fir less
But lets not judge the health service by its worst despair and distress
Staff, salt of the earth, face huge pressure, targets and stress
Its hard to catch yir breath without proper equipment, pay, nor a minute tae rest
We need mair resources, masks, gloves and tests
Mair equipment fir them hard pressed
But, also, less top doon rules, caveats, & bureaucratic excess
It’s not just an Scottish thing,
These sick buildings, all over, north, south, east and west,
Are starved of the nourishment to grow and think fresh
Decades of stifling cuts, management bonus junkies and mair done fir less
Has suffered staff tae silence, resentment and distress
And now, worse than that – tragic death
Nae wunder yon wummins sick o’ the fucking mess
And the solution? Now ? If we are to progress?
A keen sense of community tae dae oor best
Shared leadership, values and a staff/patient led NHS
Nae management bonuses for sticking it tae the staff
An end tae Westminister’s austerity’s zest
That failed to be ready fir Corona’s worst guess
A properly resourced health system that is unoppressed
Liberated from tyranny and freedom blessed
An innovative, caring and improved Escotia and NHS
That never again asks staff
To put their masks on,
As I say, particularly as this time I do not want to slag off the NHS in Scotland. Indeed, the ward that I was on a had two parts, and the senior nurse my wife knew from the other end of the ward was excellent. So, I was, as it were, unlucky to get the wrong end of the stick.
If we look behind the problems we will see that Tory cuts at Westminster have also cut the Scottish budget and post-Brexit vote devaluation of the pound has put huge pressure on hospital costs, particularly in relation to imported equipment and drugs (which will only get worse after Brexit in private vested interests get their way). The left over vestiges of Blairite performance indicators do not help either. Nor, the money wasted on pseudo- private sector management teams who get bonuses for sticking it to people lower down the hierarchy.
My poem is very harsh on the majority of the people who work in the NHS who are excellent, committed people. It is not that I am complaining that the USA was better and Scotland worse. What I am trying to get at, is that good people are often pulled down by the lowest common denominator amongst us and the disabling structures and cultures that surround them.
I was unlucky to end up on a ward that was poorly staffed, hierarchically led and under pressure. And, yet that does not excuse the behaviour of one or two of the staff members. Indeed, one of the most disappointing experiences occurred when a senior consultant made promises about potential tests and in-put from another discipline and then went on holiday without following up on his promise, by forwarding the request to the appropriate place in the system.
This guy left me in limbo for the remainder of my stay, which resulted in absolutley no further advice on my rehab (it was 6 months before I saw a consultant plastic surgeon and 8 months later that I finally saw a consultant from a specialism that could advise me on the internal, muscular, aspects of my rehab). In essence, the poor leadership in the Scottish hospital started at the top with the consultant and the nasty nurse was just a symptom of that cause.
Indeed, on the second day of my stay in the Scottish hospital I heard this consultant, who had a very plummy accent, shout at one of the senior nursing staff, in front of other staff members, in a very bullying way. That poor leadership can be contrasted with, for example, the excellent leadership of the African American lead ‘trauma’ consultant in the USA who took a group dialogue approach to conflicting views; always listened closely to my wife’s and my perspectives on my treatment and ensured that the operating teams listened to our views.
During the process in the USA, and in spite of the personal issues that emerged between us, I was exceptionally lucky to have such an experienced nurse as my wife to advise me. My wife’s specialist experience meant that she had insight into some of the procedures that would be good for me and some that should be avoided. When I was going through the four operations, one of the issues my wife was very firm on, was that I should not have a colostomy. I couldn’t say either way whether this was a good thing or not but my wife convinced me it was important. The medical team had different views to each other but my wife felt the speed of my recovery would be aided if I avoided that procedure.
Up until the third operation, it was touch and go whether they would need to do the colostomy and I have a vivid memory of waking up in intensive care surrounded by ‘hunners’ of staff (OK maybe 10 folk) who were in the middle of a heated discussion. One of the medics was arguing for a colostomy that could later be reversed. The Chief of Trauma was listening to the different positions being put by the various people in attendance. She turned to me and said, ‘Do you want me to talk in front of you or do this outside?’ I indicated for her to go ahead in front of me.
She was a strikingly charismatic and intelligent Black African-American woman originally from Texas – I guessed that from an early age she had learned to stand up for herself and to support others to do the same. Strong of voice, height, authority and stature, she asked me to remind those present what my wishes were. I could barely speak and just shook my head towards my notes to indicate my earlier position still stood, which, as she read out, was, ‘no colostomy unless it was a last resort’.
She nodded to the paper work she was holding and admonished them ‘This otherwise perfectly fit and healthy young man (I loved that bit) has indicated he doesn’t want that procedure, your job is to ensure his wishes are met. I do not want to hear any more discussion about it. Do your jobs to the best of your abilities and that procedure won’t be necessary.’
Boy did I love that woman. Just when I was at my weakest, I got to watch poetry in motion, power talking truth to power. It was like Ali knocking out Foreman, so quick you couldn’t see the punch being landed and all the doubters’ protestations were flat on the canvas. She used dialogue and respect as her leavers (not simply hierarchy). She listened, allowed everyone present to put their view and then ensured the patient’s wishes were respected.
I immediately thought of this USA ‘trauma’ lead when I heard the grating accent of the plummy consultant in the Scottish Hospital. My guess is that the negative, hierarchical and dismissive culture that the nasty male consultant in Scotland personified, resulted in the under pressure nurses not being at their best. The USA culture was to support staff to be their best – the plummy consultants culture was to treat people like shit.
If we are to progress we must be willing to call out people who drop their standards and support them to analyse why a drop in standards is happening. Yet, whilst doing so, we do not need to promote change at all costs, or force changes on staff in a bullying way. We have to approach the need for change in respectful and generous ways, we have to practice what we preach when seeking to enable a change in the culture that support patient centred practice in our hospitals.
My wife’s approach to her nursing is similar to the trauma lead’s approach and focuses on patient centred dialogue. There is a stark difference between the trauma lead’s approach and that of the nasty nurse’s and plummy consultant’s. The trauma leads approach built from agreements in the hospital in the USA about the type of culture that should be fostered by staff.
You can look on youtube and find video’s about the Hopsital in Pheonix, which talk about their nursing philosophy which aims to provide care for ‘ourselves as nurses’ to ensure they are in the best place to, then, care for patients:
The USA staff talk about caring for each other as a community and caring for the patient in a way that remembers that the reason people go into nursing is ‘to care for and about people and to help heal people.’
I have met plenty of people in the NHS in Scotland who also hold the same philosophy as the nurses in the USA, my wife included. Hence, there will be reasons why the ‘nasty nurse’ had no care for her-self nor an ethics of care for others – one of which may be that she was simply replicating the abuse she was getting from the consultant.
So my conclusion is, that though the material issues in Scotland such as hierarchies, staffing pressures, performance cultures, cuts and low moral were explanations as to why that nurse might behave in such a grumpy manner – they did not excuse her behaviour nor explain why she had not chosen to set a better tone and culture for her end of the ward.
My wife would never have accepted the behaviour of the plummy consultant, nor let it change her values and approach to patients. As I explained in relation to the action of one or two dodgy staff members in the USA, we can understand how the nasty nurse in Scotland got worn down, but, we do not have to accept her behaviour.
The USA lead of trauma’s support for my wishes could also be contrasted with the plummy consultant’s lack of respect for other people and his over inflated sense of entitlement. The experience reminded me of the work of the poet Hattie Gossett, who in the poem ‘Hey xenophobe, who you calling a foreigner’ unpicks such folk’s over inflated egos. Entitlement and class play too much in hospitals in the UK. As someone who had worked in hospitals, I was probably listened to more than your average patient but that made me think what about the patients who can’t stand up for themselves and don’t encounter staff who value their voice, such as the elderly in care homes.
That question, ‘who stands up for those with the quieter voices?’ troubles me during these Corona Virus times. Most of my career I have found working class folk to be hardworking and give an honest day’s graft. I can not say the same of folk with plummy accents – many who exhibit such accents seem to expect all the trappings of wealth but not believe that they have to dirty their hands working for it. In the Scottish hospital, it was the less well paid staff, the assistants, the catering staff and the students, who were the ones who spent time to find out about me, chat, keep their promises and show an ethics of care.
In the USA, I rarely considered my gender to be a big issue. But in the hospital in Scotland; it was as if I was being portrayed as a naughty boy from the Victorian era that matron had to knock into shape. In the USA, I had asked my wife to avoid doing any of my care. 24 hours spent in the Scottish hospital and I was phoning her up to say, ‘can you come in early and save me from these fuckers – the way they are treating me is worrying.’ When she came in, her professional conclusion was that unless things changed I was going to get another infection.
During my time in the USA only one member of staff mistakenly asked me to sit up and our good Samaritan Jean sorted him out very quickly. In contrast, very few of the Scottish staff got their heads round the idea that I was not supposed to sit up – my assumption is that the staff to staff hand over of patients notes/case history was not carried out properly in Scotland and new staff were not provided with enough hand-over information.
The second day that I was in the Scottish hospital the staff brought in a weighing chair to weigh me. The conversation went like this:, Nurse; ‘No one told us you could nae sit, could you have a try’, Me: ‘I take it you haven’t read the notes.’. Nurse: ‘I have read the notes.’ Me: ‘Well, I am sorry, but they say I am not allowed to sit up for ages.’. Even the shower, which was not detachable, was set at head height for a seated person – which suggested to me that I was in a wheelchair adapted room and maybe staff were making assumptions based on previous patients who had be given this room.
As previously discussed, I had two collapse episodes in America. I wasn’t allowed to wash without someone near at hand. The approach of the staff meant I had to wait for my wife to come in before making do with the low fixed shower the best I could. Interestingly, when he had had a serious operation four years previously, my son had preferred me, rather than staff members, to do his bathing/showering.
During the day his care was excellent but at nights and weekends things were a bit more tricky and I often found myself cleaning the communal shower before I took him in there to get washed. At the time. I didn’t complain about that. I was happy to do my bit, if it gave the staff a brake and, because, in general, the staff were excellent. But it did make me aware (as had been the case in the USA) that the quality of care varies in all hospitals and the quality is often reduced in the evenings, overnight and at weekends.
In my case, I couldn’t bend to wash my head and hair and using a small container to chuck water over your head doesn’t give you that same relaxing feeling, at all. I also wanted to shave but the mirror was too low. They couldn’t have chosen a worse place to isolate me in to reduce the independence that I had gradually developed in the USA. It was a bit ironic that I might have had better access to a shower if I had not been isolated into a private room and had been on an old fashioned ward like the one my son had been on with a common shower room.
The adaptations in the room made it less accessible for a person with my impairments. It can be the case that, a sensible reasonable adjustment for one disabled person can be quite limiting for another disabled person. My friend Mairian Corker wrote about this in a book with Sally French called Disability Discourse, where they discussed the different requirements of deaf and blind people. During my time in the Scottish hospital I was reminded of Marian and Sally’s discussion concerning how wheelchair users and people with mobility issues have different perspectives on the accessible nature of the lumps at traffic crossings (which are there to aid the sight impaired).
Hence and to conclude this article, my issues in Scotland related to the lack of an ethics of care and self-respect of some staff. They also related to the imposition of Universalist approaches that failed to engage with my impairments, care routines and bodily requirements. That is, the same requirements that had been relatively easily catered for in the USA – somehow became a problem in the ward in Scotland.
My sense that I was being constructed as a problem was not helped by the fact that the staff took away my pain killers without thought for side effects that the withdrawal had on me. My conclusion is that something has happened to parts of our NHS in Scotland that means that some staff have an inability to take responsibility for their actions, to listen to patients and to develop innovative ways of working. I concluded that, hierarchies and top down pressures meant that some of the Scottish staff were not able to work to the best of their abilities.
Overwork, staff shortages, performance indicators and cuts had taken their toll on some of the staff I encountered. But, it should be noted, I am also aware, because of personal experience, that in other hospitals in Scotland patients get a much higher level of care than I received. My experience in the Scottish hospital added a great deal more stress to what had already been a very stressful experience for my wife and myself. The next post, Article 11, discusses this in relation to my eventual release (which was managed in an incredibly poor way) and the longer term issues that I experienced when my gradual recover included having to face the process of longer term drug withdrawal and to begin a very slow journey back to reality.
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.