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.’