On becoming (a) patient

This is the text of my new paper published in the June edition of the Journal of Critical Psychology Counselling and Psychotherapy. Send me an email if you want a PDF of the published paper.

On becoming (a) patient

On November 26th 2014 I had a potentially life changing experience of falling off my bicycle and breaking my right leg and hairline fracturing my right elbow. Whilst the physical care I received from the NHS was excellent the more holistic elements were more variable. I am driven to reflect on my experience - not hopefully (or merely) as a form of self-indulgence but to raise questions about how we deliver care to one another whether professional medic, patient, family or friend. I am drawing on some notes and poems written during my 13 days stay in hospital. My earliest notes had to be written with my left hand not my usual writing hand.

Beginning at the beginning

I was on my usual route cycling home from work at dusk. I was really enjoying the cycle home and looking forward to a working visit to Kenya 4 days later. I turned off the main road into an alleyway that is a cycle route used by both cyclists and pedestrians. Gathering speed on the slight downhill I noticed a young man heading my way on foot. As the distance between us narrowed I realised that he was not aware of me. It was too late to sound my bell or break my speed, so I swerved to his left to avoid him. This took me onto wet leaves. My bike skidded and I lost my balance and I crashed down onto flagstones and broke my right leg near to my hip and my right elbow sustained a hairline fracture.

I tried to stand up but my right leg was having none of it and refused to work. Even with the help of the very apologetic pedestrian I was unable to stand. I couldn’t believe it! This was not meant to be happening to me. This was the start of a process of denial that continues – This can’t be happening to me, this was not in my script and if it was why could it not have happened after my trip to Kenya? Such bargaining is of course futile. Reflecting later on my experience I was relieved to notice that I had not had a head injury, and that I was not in hospital for Christmas or even for the pre-Christmas busy period.

During the seemingly endless wait for the ambulance some neighbours and my wife (I was close to home) turned out with blankets and diverting conversation and finally a paramedic arrived 10 minutes before the ambulance. She gave me gas and air and calmed me down. So after a cold wet wait of about 50 minutes an ambulance finally arrived. Once in the ambulance we had to wait some time whilst the painkillers took effect so that I cope with the drive to hospital. My best work trousers are cut off so that my leg can be examined. I felt cold and start shivering. The two ambulance men kept me distracted with some amusing banter. It really did the trick and was my first experience of good care by men during this incident. After a slightly queasy journey, I was subsequently admitted to hospital where I remained for 13 days following surgery, under general anaesthetics, to pin my broken leg.

Being vulnerable and labile

I got bored a lot. Had to let people care for me even when I didn’t want them to. I was vulnerable, weak and needy which I hated.

I hate being vulnerable and needing others to care for me. But following surgery I had to accept such help – bottles and bedpans; being moved up and down the bed; having things passed to me or put in reach of my left hand; for a while I needed some help feeding myself; help standing up for the first time. I was on morphine for the first few days and this gave me vivid dreams-like hallucinations. I felt more emotional than usual, more easily moved to tears by acts of human kindness or watching or reading about other people suffering. I was also more bad tempered and angry than usual; all in all more labile. I am still not sure how much of this was down to trauma, how much a reaction to morphine, but I am very clear it was not just a physical process I was going through. Looking back on my 2 months off work, hospital then housebound, it felt like being on a bad retreat from the world that went on too long. Five months on I still feel trapped in my body which is still not functioning as well as I would wish.

I don’t belong here

I don’t belong here
Well it’s true
I crashed off my bike
But these other guys
Have much longer back stories.

I feel a fraud
Just in for a quick bit of bone setting
And seeing how stressed
And over worked the nurses are
And how other people’s needs
Are legion
Compared with mine
But

On needing a bed pan

‘I’ll need a commode soon’
She nods
The feeling becomes urgent
‘I am going to shit myself’
The words are forced out of me
She moves quickly
And arrives back
Just in time
It was a close one.

It was a challenge to insist on my needs being met however small given how much worse my immediate fellow patients were. I got in a habit of saving my needs up and then asking for two or three of them in one go when I eventually had to buzz for a nurse. At times the nurses were rushed off their feet especially when under staffed. They would quickly deal with the immediate issue and rush off not hearing subsequent requests.

Busy staff walk away briskly and consequently do not hear their patients’ final words. So much is lost and so mistakes get made. I thought ‘Can they not ask is there anything else you need?’ I did suggest this to one nurse during a quiet time but it was not well received. I understand this but.

The ward as heaven and hell

It was blind Colin
Blundering out of bed
Setting his alarm off
That woke Samuel
Who immediately began to
Climb out of his bed
Eric was asking for a nurse
In his quiet well-bred voice
It’s 4am and where am I?
Oh Yes, trauma ward in the hospital.

In my bit of the trauma ward there were 3 other men, 2 older than me and all with pre-existing conditions as well as recent broken bones. One of them (Colin in above poem) was often awake and noisy in the night and this woke me and woke the others who often then called for nurses. Two of the men had alarms attached to their bodies to alert the nurses that they were attempting to climb out of bed so if the nurses did not arrive quickly off would go these alarms. I was asked to look over these 2 fellow patients and press my buzzer if they were attempting to climb out of bed. Often the alarms would go off in any case as the response to my buzzer was too slow. My colleague Alistair Ross writing about his time in hospital following a fall off a Welsh mountain speaks of his “distress at no one answering my buzzer at night” (2014: 24).

We settle down and then
Out of the frame
Rachel kicks off
‘Get out of here’
‘Get out of here’
She screams
And nurses get hit.

Rachel was in another bay of the trauma ward and most nights at about 2am she would get angry and yell and on more than one occasion a nurse would be hit by her. If my fellow patients were asleep when Rachel yelled this would wake them and noisy chaos would ensue.

The good nurses and volunteers

Once or twice a nurse would stay seated in the bay for the first few hours of the night sometimes engaged in doing paperwork. On these occasions all was calm as patients’ needs were quickly and quietly attended to and we all had a good night’s sleep. It was as if the very presence in the room of a nurse was calming for all of us.

I was pathetically grateful when people did unexpected kind things for me. There was a male nurse who made me coffee and toast at 11pm when I was first admitted to hospital. This was the best food and drink that I have ever tasted and even more special because I knew that I was allowed only water after midnight as surgery was arranged for the following morning. I was also surprisingly touched by receiving care from 3 male nurses. There was a peculiar poignancy for me to receive nursing from men.

She wheels me to the chapel
For a moment of rest
And reflection
Bathed in the colours of the stained glass
And I’m weeping
Glad to be alive
And out of my head on morphine.

There was a chatty volunteer who wheeled me in a wheel chair along the seemingly endless corridors to the hospital chapel that first Sunday dressed in pyjamas and dressing gown and feeling vulnerable. It is hard to overstate the impact of simple humanity to patients stuck in hospital. Being spoken to, being listened to, being offered a helping hand impacted on me out of all proportion to what was involved. Ross says “In the midst of this medical care there were two acts of kindness that deeply touched me. (2014:24)

What was it like?

Being in hospital made me vulnerable, scared, lonely and in need of human contact and care. As with bereavement it seemed like that some close friends avoided contact and some not so close made a big effort to write to me and visit. I remember acutely which of my friends and acquaintances contacted or visited me. As Ross says, “And, sadly, some people who I thought would have been in touch have remained stubbornly silent” (2014: 24).

It’s 9pm
And I’m wide awake
And the nurses don’t need me
I need them
But they are far away
It takes an eternity for them to
Respond to my buzzer
Or so it seems
And it’s soon over
And they vanish into the dark again
Or so it seems
It’s easier if you have
Simple physical doable needs
Or so it seems
Feeling lonely and
Needing a bit of company
Is different
Or so it seems.

Hospitals get lonely especially when staff are overly busy and the visiting hours are over. It’s a long night too. After a few days I learnt to manoeuvre myself unaided from bed to beside chair. This was a real breakthrough. From this chair I could look out of the window over the hospital car park but also see the sky. I was able to see sunrises and sunsets and the phases of the moon and thus a connection with nature that is important to me and drew me out of the limitations of the hospital ward I was in.

The patient with no name

Please don’t see me as disabled,
Look beyond these signs of my frailty.
Even if my mind is broken
Look for my soul and spirit.
Be in the moment with me
if you can.

So I am out of hospital and using a crutch to get about and feeling very vulnerable especially among crowds. Some people notice me and are helpful others seem to ignore me. A few days back at work and I am at a meeting a Chester University. My colleague has dropped me off near the café and has driven off to park his car. I queue up and buy my cappuccino and sandwich. A woman behind the counter notices my plight and picks up my tray and carries it over to a suitable and comfortable table. I feel pathetically grateful. I get on the tram on the way home and it is busy and no-one offers me a seat. I cling to rail with my broken arm and wish I was not so English and polite. I feel that becoming (hopefully) temporarily physically disabled has given me insight into the world of the disabled. I desperately wanted people to notice that I had a crutch but to also see beyond it. I am now more aware of people with physical disabilities and especially aware of others with crutches and walking sticks and wonder what their stories are. I notice that some people have temporary NHS crutches like mine.

What does it mean?

According to Kleinman et al., modern physicians ‘diagnose and treat diseases (abnormalities in the structure and function of body organs and systems), whereas patients suffer illnesses (experiences of this value changes in states of being and social function: the human experience of sickness).’(1978: 251). So from a patient point of view it is not merely how our bodies and their diseases are dealt with it is also how we are treated as people who are suffering.

There are ongoing problems around nurse staffing levels in hospitals and not just in Britain but also the USA and Canada and this understaffing impacts not just on nurses stress levels but also on patient outcomes (Aiken et al 2002). Various top down reorganisations seems to have little impact on this this issue - “Each country tends to think its problems with uneven quality of care and shortages of nurses and other healthcare workers are a consequence of unique demographic and social phenomena or specific policies… The widespread diffusion of new models for organizing care that have no evidence base may be part of the problem rather than the solution” Aiken et al, 2002: 192).

There is evidence that well organised supervision sessions for nurses in the NHS does impact positively on nurse stress levels and patient outcomes but some nurses do not want it and some managers wont resource even though it pays for itself. “It is quite proper to suggest that structured opportunities to discuss case related practice, personal and educational development are vital to nurses, their practice and patient safety.” (Butterworth et al 2008: 270).

There is currently a campaign supported by the Observer newspaper for family and friends of people with dementia to be allowed much more access to their loved ones in hospital. Comparisons are drawn with the positive impact of allowing family access to children in hospital. I know in hospitals in India that family support or patient is welcome and common. I can see no real reason why this should not happen in Britain across the board.

The physiotherapists treating me recommended that the nurses help me walk several times a day and would not discharge me until I was more securely on my feet. It was hard to get this help from the overly busy nurses until I repeatedly badgered them. I had to learn to assert my needs against those of my less well fellow patients. My wife, even though she has a background as a health professional, was not allowed to assist me in this way at first. As a result I was in hospital for at least 3 days more than strictly necessary.

In Conclusion

I did get very good emergency care in response to my accident including some excellent home physiotherapy. I would love to see hospital nursing being better resourced and better supported and it is not all about money. I would also welcome more use of family and friends in hospitals and the recognition that better outcomes would probably be the result and if not the experience of being in a hospital would be improved.

References

Aiken, L. H., Clarke, S. P., and Sloane, D. M., (2002) Hospital staffing, organisation, and quality of care: cross-national findings, Nursing Outlook, 50 (5) 187-193.

Butterworth, T., Bell, L., Jackson, C., and Pajnkihar, M., (2008) Wicked spell or magic bullet? A review of the clinical supervision literature 2001-2007. Nurse Education Today, 28 264-272.

Online Oxford Dictionary, http://www.oxforddictionaries.com/definition/american_english/patient accessed 16/3/2015


Kleinman, A., Eisenberg, L., and Good, B., (1978) Culture, illness and care, Annals of Internal medicine, 78: 251-258.

Ross, A. (2014). A story of falling, Therapy Today, 25 (8), 22-25.