A Farewell

As my time with Nursing Studies ran out some time ago, I'm long overdue signing off this blog and wishing Nurse Stories a fond farewell. 

While I move on to other writing projects, this blog will stay online - in a kind of suspended animation - for a time to be determined by Blogger. I hope it will inspire many nurses and nurse writers to come. You won't be able to post comments, however. 

With the commemoration of the First World War coming up however, I couldn't just leave you without a recommendation for a great and timely piece of writing about nurses, which really captures the essence of the role.

Thomas Keneally's Daughters of Mars is  a totally satisfying, well researched novel which follows two Australian sisters into their careers as nurses throughout the First World War. It concentrates on their working lives, the cramped conditions of hospital ships off Gallipoli and the tented hospitals of Northern France, the medical and emotional responsibilities they took on. Fascinating stuff for these early dark evenings.

Read and write on,
Nicola 

Nurse Blaming

It was clear from the Francis Inquiry that, within the Mid Staffordshire Trust, nurses failed and neglected patients. There is - of course - no excuse for such cruelty, but to really understand what went on, these acts must be seen not in terms of individual failings but within the context the final report describes, of a hospital trust putting ‘corporate self interest and cost control ahead of patient safety.’

Yet the government’s response to the report focused mainly on nurses’ capacity to care, coming up with a recommendation that anyone entering the profession spend a year as a healthcare assistant ‘before entering university’. There seems to be a misunderstanding here about how university trained nurses spend their time – do they realise that fifty per cent of those three years is spent in a clinical setting dealing directly with patients, not in a library or lecture hall?

The student nurses I meet are full of enthusiasm and compassion. ‘I just love it,’ they often declare of their new profession. I don’t see nurse education as the source of the problem. The key question for me is what is it that happens between graduation and all too frequent burn-out?

When I talked to nurse Shaun Maher about compassion, he said that not being able to do your job well gradually chips away at satisfaction, turning nurses cynical or else driving them out of the profession. ‘There’s a gap between the care you want to deliver and the care you are able to deliver.’

The Willis Commission – set up to examine the best way to train nurses to meet the challenges of contemporary healthcare – published its findings in November 2012 and did not recommend any change to the way nurses learn within a university degree framework. But just three months later, among it's many other recommendations, the Francis Inquiry suggested that nurses should spend some months as healthcare assistants before degree training. The government seized on this, increasing this dubious apprenticeship to a whole year before formal nurse education starts. How this will be effected, costed, or whether it will become a barrier to entry hasn't yet been worked out.  Meanwhile the government has ignored other Francis recommendations such as registering all healthcare assistants who do so much basic care for minimal wages and status. Deborah Orr, in a scouring article in the Guardian, wrote of how little we value and reward the whole idea of care in our society, and how little we pay for it. Yet David Cameron does not hesitate to lecture nurses on compassion.

Nor has the government supported the Francis recommendation of action on staffing levels, which seems to me key to the kind of burnout Shaun describes above. Their resistance to this move can only be because legislation would get in the way of private companies making profit in whatever way they see fit.

In her recent inaugural lecture on the state of nursing, Tonks Fawcett quoted the Willis Commission: ‘Our education system must produce nurses who have both intelligence and compassion, not one or the other.’

Aside from all the academic and practical skills they must take in, nurses must also learn to speak up for themselves more effectively, especially at times when they are being scapegoated – when dangerous systemic failings are blamed on their lack of ‘feeling’. It is only by having a better voice that 'nurse blaming' can be countered with constructive ideas and action.

In an interview with the Nursing Times last week, Robert Francis expressed disappointment with nurse leaders' response, or lack of response, to his report (for example, the Chief Nurse of England's report has been delayed until June). He said, “There is a need to strengthen the voice of nursing so that what nurses need in their workplace to do their job effectively for patients is articulated better and stronger.” 

Nurses' Day, Nurses' Stories

I was out of the country for the last week, and so missed the chance to post something for Nurses Day on Sunday the 12th. However, visiting the RCN website, I see that they have gathered up the stories of many nurses, a collection of heartfelt pieces about how nursing feels from the inside - much better than anything I could say.

Here is one of the stories, reblogged from their website. I particularly like the way it captures how a nurse's involvement with a patient can be life-changing for the nurse, too. You can read all of the stories here

Being human

posted on the RCN website by Dave King 

There have been some deaths that have had an impact on me over the last few years. My mum, my uncle, his wife and their daughter, and my brother-in-law.  And Sean.

I first met Sean when I had been qualified for but a few years, in the early nineties, and was working as a staff nurse on a locked ward in a large hospital, where it felt like we played darts, table tennis and football for much of the day, and tried to keep control of the ward for the rest.

I don't honestly remember where Sean was admitted from, and don't feel inclined to find out, because that's not the point. I have a few strong memories of him: he was young, wirey and fit, with a head of shaggy black hair. He could climb a drainpipe as if gravity hadn't been invented, and persuading him to come down from the roof of the Victorian institution was not an unheard of event. On one occasion he came down (in his own time, as was always the case) on the 'wrong side'; the side where the rest of society lived. Luckily for society I was there, waiting; recently trained in Control & Restraint (C&R - look it up in the history books), and ready to fulfil my responsibilities under the Mental Health Act (Section 138).

The tussle began as might have been predicted, but quickly took an unexpected turn. Sean started to cry. They hadn't covered this on the C&R course. If Sean had put me in a neck lock, I was prepared. But crying? This was a new one.

Being a conscientious mental health nurse removed many options, but a sense of humanity seemed to leave me with one solution. It was obvious. I hugged him. I hugged; he cried; support finally arrived, and we returned to the ward.

A less clear memory of Sean occurred when he was found cutting his forearm in his bed space, and we intervened. The scenario unfolded safely enough, but, afterwards, a colleague informed me that I had been cut, pointing to the wounds on my arms. It quickly transpired that the sweat and the duration of the restraint had resulted in some of Sean's scabs transferring themselves from his arms to mine.

Fast forward about 15 years. Our careers had separated. Sean has spent time in a high secure hospital, and I have been a charge nurse in a medium secure service for some years. Sean is making good progress and has an identified discharge pathway, it could be a couple of years, but things are looking good. I have been charged with managing our service's new Long Term Medium Secure Service, and Sean has agreed to advise on the admission process from a patient's point of view. His advice is succinct; "Tell 'em how it is straight; don't mess them about; as long as they know the score, they'll be okay." And so it proved to be. Sean the service use expert.

A few more years and Sean had been discharged. A flat, a job, a girlfriend. An unexpected illness and a tragically early death. After all his hard work, Sean hadn't had the time to enjoy the fruits of his very hard labour.

The patients, staff, family and friends who attended his funeral felt a deep and genuine sense of loss. That included me, and it also made me begin to wonder about the way in which being a forensic mental health nurse can affect us, and how (if, indeed, we do) we manage to remain personally balanced and undamaged by the work we undertake. Human.

We feel the impact on us of the acts of others. I wonder if we understand that we, too, can leave an impact on them.

Back to College

Although the residency that this blog sprung from ended in December, I’ve been invited back to the School of Health in Social Science for the month of May to run some writing workshops with students and continue my writing about nurses.

May is a good time to come back to Edinburgh – the light on the old buildings is beautiful, the trees are finally misting over with new green, and there are interesting talks and events happening.

Last week, I went to the inaugural lecture by Professor

Charlotte Clarke

Charlotte Clarke, the (relatively) new head of school. Charlotte’s background is in nursing, and her lecture drew on years of practical and research experience in dementia care. In the talk, she challenged the habitually negative framing of the disease, and explored how we might better support those who are losing a cognitive, linear sense of themselves, but remain as human and emotionally complex as anyone else.

Towards the end of the talk, Charlotte shared a poem she had written about an inspiring encounter with a former patient. In a short space, it illuminated the theme of the lecture with a human presence. I thought it a perfect example of the particular understanding that nurses can bring to the world through expressive writing, if they give time to it.

Here is the poem:

Ahead of His Time

1980’s

Rehabilitation ward they called it

But few ever left alive

Edward

Let’s call him that

Wordlessly seeing out his days

Silent with his fragile dignity

Early shift

Time to get Edward up

Talking – monologue

Not expecting any answer

Gardening

Edward's job in years before

Lettuce and the problem of slugs

Slug pellets, salt rings, jars of beer

Tried them all

Any suggestions?

“Don’t grow them”

A silence broken!

But instantly returns

Forever, for Edward

I don’t grow lettuce now

Such ecological wisdom

Didn’t think like that in the 80s

So ahead of his time

Few words, big lesson

That has shaped my life

Work with, not against

Thank you Edward.

First published in Gilliard J. & Marshall M. (eds). Time for Dementia. Hawker Publications, London. 2010

If dementia is something that affects your life, or you are interested in understanding more about it, I can recommend the book Keeper, by Andrea Gillies – a deft blend of memoir and scientific investigation that won the first Wellcome Prize for literature in 2009. 

This week’s inaugural lecture is by the new nursing Professor, Josephine Tonks Fawcett, reflecting on a lifetime’s experience in nurse education, which I’m looking forward to very much, especially in the light (or should that be shadow?) of the Francis Report and it’s recommended changes to the way nurses are trained. Changes seized upon and expanded by the government in recent months, as if nurses were the wellspring of hospital failure. But more of that later.

You can read my interview with the inspirational Tonks here.

Story: I See You

This is the final part of my four-part ICU story. The last word goes to the patient...

Harry

Dreadful. Just dreadful. One time Valerie was by the bed and she’s holding on to this arm that’s lying on the sheet beside me and I say, whose arm have you got there and she says, it’s your arm, Harry. Giving it a little squeeze, and saying can you feel that, can you feel my hand and the arm can feel it, but it’s not part of me.

The things they did to me in there. Pushing knives under my skin, a poker down my throat. Cackling while they did it. But Valerie says no that was dreams, no-one was laughing or torturing. They saved my life. My brother Vincent says it’s amazing what medicine can do these days, just amazing. We nearly lost you Harry, raising his glass high.

The dreams weren’t like any dreams I had before. They were all the time and more real than real. I was always looking for something and there was always someone coming after me. On and on and on. Underwater most the time. I swam right up to the pit of blackness. I can’t explain it properly, but it was like myself I was looking for.

It’s the worst thing I’ve ever experienced. Only most of it didn’t happen.

I try to put it together. I start with getting flu, and I remember the ambulance, then it goes into strangeness. Voices, snatches of things. I can’t tell anyone about the worst things. Just can’t. Then her face, bright and big as the moon coming down from the sky to hover over me. Cecilia. Really, the loveliest face, pulling me up from dark water. Nurse Cecilia. I see you, she said to me, that’s where you are. I … see … you. Holding me safe in her eyes.

God must have plans for you, says Vincent, on to his second whiskey. I can’t have a drink yet, now, maybe ever. He talks like this to say he likes me, to say he’s relieved. My wife and daughter look shifty when he talks about me nearly dying. He thinks it’s okay cos I didn’t, but they both get this funny embarrassed look and I know then they thought I was going to.

I can’t get from one side of the room to the other without hanging on the furniture. I don’t want to go out and get asked how I am. I find myself looking through the blinds at the empty street and worrying about who’s out there. Like whatever I was looking for in those dreams, well now it’s looking for me.

Everyone thinks I’m a cranky old bugger, that I should be kicking my heels up with joy. Valerie looks like five years have passed in three months. She’s no kicking her heels neither. I’m sleeping downstairs anyway, a bed behind the sofa cos the stairs are hard to manage. I keep the telly on through the night.

Dawn comes down and sits on the bed, squashing into me, but it’s nice. We’re watching The Matrix, I seen it before, but now when I see that boy inside that huge space like the belly of a monster and him and those others with tubes coming out of them. I start to shake. Y’okay? says Dawn. I try a laugh, that’s me, I say, me in the hospital.

And she sits up real straight and says, Dad, it’s the very opposite. Your machines were feeding you, not feeding off you. She’s so sure of what is what, her voice pat pat pat, even though we’re talking crazy stuff.

You’re not in love with that nurse are you? She’s moved her eyes back to the telly. I want to tell her how it was, but how can you? Ach, there were loads of nurses, I say and anyway I don’t love anyone but you and your mother. And Zippy she says, to lighten it up. Zippy’s the cat. And Zippy, I say. And she puts her hand over mine, hiding the bruising and says, be quiet, there’s a good bit comes next. 

Shaun Maher: ‘You have to give something of yourself”

It has been a while since I’ve had the chance to post on the blog, so apologies for the silence. In compensation, here is an interview with Shaun Maher, an inspiring nurse who is working to improve patient care across Scotland.

I first heard Shaun speak at an Intensive Care study day, where he talked about what ‘person-centredness’ might mean in this most technological of settings. An ICU charge nurse at Forth Valley Hospital, he was articulate and energetic and introduced concepts that felt fresh- to me, at least – in terms of the dynamics of healthcare. He talked of how his unit had worked to abolish visiting hours, saying ‘The patient’s family are not the visitors, we are the visitors in their lives.’

Another innovation was to allow families to make requests of the staff, on a form with the question ‘What would you like for your family member today?’ Understandably, there was some initial resistance to this among the ward staff – they feared that they would be asked for things they could not deliver – wellness, the miraculous. Yet the actual requests that came in were often heartbreakingly small and achievable, to do with chapped lips or other modest comforts. As Shaun says, ‘Nurses feel “I have only so much time, I won’t be able to meet their needs,” but that’s not the reality. People actually ask for less than we assume they want.’

Since that study day, Shaun has taken up new role – he’s on a two-year secondment with Healthcare Improvement Scotland working on their person-centred care programme. He took up this challenge because, although he could effect change within his own unit, he was frustrated that he had no way to spread this into the wider system.

We met at a café near Edinburgh Park Station – his new post sees him shuttling between offices in the central belt – and I asked him where his conviction and ideas came from. As an influence he cited Harvard professor Don Berwick, an improvement guru who worked on the “Obamacare” reforms in the USA and has just been appointed by David Cameron to head up the National Advisory Panel on the Safety of Patients.

But many of Shaun’s ideas are grounded in his own clinical practice. He tells me about a telephone conversation with a nurse in A&E who had two patients who needed to be admitted to the ICU. One required immediate life-saving treatment, but the A&E wanted to send up the other patient ‘as she was about to breach the four-hour wait limit.’ It is a vivid example of how the needs of patients and common sense can be over-ridden by too much attention to systems and targets. Although what happened at Mid-Staffordshire was an extreme example of NHS dysfunction, it is symptomatic of wider difficulties.

And how do you change an organisation as large and complex as the health service? Shaun talks of ‘Reliable Design’ and ‘Improvement Systems’, and my mind starts to fuzz – it seems to me as difficult as rebuilding an ocean liner as it is crossing the Atlantic. But at the same time I’m very glad that people like Shaun are working on it, are willing to tackle the challenge of finding a way towards more humane and continuous care. And although he is enjoying his time in the policy end of healthcare, Shaun is keen to keep up his clinical practice during this time and ‘stay grounded.’

Although Shaun has many nurses in his family, both male and female, his first jobs were in forestry. ‘I didn’t want an ordinary job’, he says. Soon, he found himself gravitating towards healthcare. His aim was to go in to children’s nursing, but his final training placement was in Intensive Care, and he took to it straight away. ‘I liked the drama, the severity of the situations and the intellectual challenge of the technology and physiology’ He jokes that it appealed to ‘the OCD part of him’, the part that took pleasure in having all his lines straight, in generating checklists and having the equipment arranged just so. But like many ICU nurses I have spoken to, the most important aspect was having the chance to look after his patient properly, to give time to the task. ‘I felt at peace with myself there,’ he says.

‘And although you see a lot of death, paradoxically, that can be a very satisfying aspect of care to work in. People who connect emotionally to the work do the best job, but you have to give something of yourself, and that has consequences.’ He says that every nurse experiences certain cases that ‘get to them’. ‘Perhaps because it mirrors something that has happened in your own life, or simply because of the youth of the patient or other particular circumstances.’ Being able to let that emotion out in a safe environment is important.

We talk of patients’ hallucinations and the psychological agonies of the ICU experience. ‘The brain is a protective mechanism, but people rationalize their experiences as torture, or being in a concentration camp, or that people are doing experiments on them.’ Sometimes, though, the delusions are less nightmarish, more amusing. He tells me of a man who complained about what he perceived as the constant parties that the nursing staff held in the ward. ‘He said that people kept opening cans near him – I think that was the sound of the hand spray units, and sides of smoked salmon – well, the tracheostomy kits come in long silver envelopes, so I think that was it. An interesting thing is that we thought this man was totally back to normal by then, when he wasn’t at all.'

Shaun says that, in terms of the psychological damage, there are three things that can make a big difference to recovery.‘The first is to involve the family or close friends, so that the person can hear their voices and remember them as part of the experience – it helps them feel secure, and it also means those people can help them rationalize what happened when, can remember it for them. The second is early mobilization, and the third is to keep a patient diary, especially for the sickest and most delirious, so that they can reconstruct a chronology of what happened to them.’

The Body in Crisis

Now that I have some time to reflect back on my months at the university last year, certain events stay vivid, full of insight.

One such was The Body in Crisis event, organised as part of the ESRC Festival of Social Science in November. One of the key organizers was Susanne Kean, who I interviewed for the blog last year.

What brought me to the event was not just my interest in Intensive Care, but the fact that it would be an exploration of the experience from different perspectives, with contributions from health professionals, sociologists, academics, and – crucially – patients and their family members who had survived the critical care experience.

By the time someone is admitted to intensive care, one or more of their vital organ systems will be impaired or injured, their life will be in the balance. If they survive the experience, their bodies can take years to recover – the damage caused by muscle wastage, for instance, can last up to five years.

But as one of the contributors, Danny Kelly, reminded us, ‘We don’t just have bodies, we are bodies.’ A crisis for the body is a crisis for the mind and spirit too, especially when the person cannot comprehend what is happening, as is so often the case.

The accounts of former patients were riveting, particularly the details given by one young woman, who had been hospitalized for swine flu when she was 25, and quickly admitted to ICU, where she stayed for more than a month, her life in the balance. She brought a patient’s perspective to vivid life – the disorientation, the anxiety, the physical pain, the strange dreams and terrors that beset her – she spoke of dreaming that she had the feet of an elephant, then showed us a photograph of her in the ICU unit wearing huge blow-up sleeves on her lower legs which help with circulation and pressure sores. The mind make up its own reasoning when all around makes no sense.

The photographs that she had of her time in critical care, and scans of her first scrawled attempts at handwriting, seem to have helped her make sense of her experience, but she did not pretend that her recovery process was anything but gradual and prolonged. She had help from the Community Rehabilitation Service for six weeks, but said she was newly frightened of germs, and of coming into contact with the general public, and that the small amount of counselling she had received had helped her more than anything else. Even now, she said, two years on from her illness, things come back to her from that time.

It is estimated that around 25% of ICU patients will suffer from Post Traumatic Stress. One of the things that can help recovery is the construction and absorption of the ‘story’ – the exact sequence of events of a person’s illness, treatment and recovery, the separating out of what was imaginary and what really happened. It is standard practice in the modern army for injured soldiers to be accompanied by papers outlining the sequence of what happened to them – an understanding that psychologically we need not only to understand our story, but to be allowed to go over the details again and again, to embody that knowledge.

There is some interesting research work happening at the moment around the use of diaries and patient stories within ICU settings, and from the former patients at the Body in Crisis event, especially those most recently treated, I did get that sense of people going over the details again and again, just as one does in grief, to try to make sense of a new reality.

The ability of modern ICU units to snatch life back from the jaws of death is awe-inspiring, and to be celebrated, but for individual patients who have gone to that edge and back it is always a life changing event, a victory that is wrapped in calamity.