Article
Care
Change
6 min read

Are we forgetting how to care?

The profound act at the heart of nursing.

Helen is a registered nurse and freelance writer, writing for audiences ranging from the general public to practitioners and scientists.

A nurse bends beside a bed and talks to a patient
Marie Curie.

Recently, at a nursing leadership programme in Oxford, attendees focused on the fundamentals of care.   Have we forgotten how to care? What can we re-learn from those who pioneered an ordinary yet profound act that affects millions? 

Anam Cara is an old Gaelic term for ‘soul friend’, a person with whom you can share your innermost self, your mind and your heart. It is a term that Tom Hill, former chief executive at Helen House Hospice in Oxford, used to describe the relationship between his staff and the thousands of children and their families who passed through their ‘big red door’ in its first twenty-five years. The hospice (or ‘loving respice’ as it became known) had been founded by Sister Frances Dominica in 1982.  

Other care in this country can also trace its religious roots. Between 1048 and 1070 in Jerusalem, the Order of St. John was founded for the purpose of helping pilgrims (“our Lords, The Sick”) who had become lost, weary, or beset by other difficulties while on their way to the Holy Land. Today, in the United Kingdom, the British Association of the Order has extended care to older people first in almshouses and later in care homes. A trustee for ten years was John Monckton, a man of ‘considerable talent, enormous integrity and deep religious conviction’; his tragic murder in 2004 led to the creation of the John Monckton Memorial Prize, which recognised and rightly celebrated commitment to care by care workers. 

Today, across the world, seen and unseen, nurses, carers and families continue to provide compassionate care. “Assisting individuals, sick or well, in the performance of those activities contributing to health or its recovery (or to peaceful death) that he would perform unaided if he had the necessary strength, will or knowledge” is the very essence of nursing, captured by ‘architect of nursing’, researcher and author Virginia Henderson in 1966. Meeting more than basic needs such as breathing, eating, drinking and eliminating bodily waste (which are of essential importance), Henderson recognised the role of the nurse in enabling humans to communicate with others, worship according to their faith, satisfy curiosity and sense accomplishment.  

In the desire for modernisation and professionalisation, have we lost sight of the core values and activities central to patient care?

An uncomfortable truth brought out in healthcare reports such as the Final Report of the Special Commission of Inquiry (The Garling Report) 2008, and the Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry (The Francis Report) 2013 is though that this type of nursing is too often done badly or even missed, leading to pressure injury, medication errors, hospital-acquired  infection, falls, unplanned readmission, critical incidents and mortality. According to nurse scientist and scholar Professor Debra Jackson, “missed care occurs much more frequently than we might think”. She cites a systematic review in which ‘care left undone’ on the last shift ranged from 75 per cent in England, to 93 per cent in Germany, with an overall estimate of 88 per cent across 12 European countries’. 

In one offensively-titled paper, “Shitty nursing - the new normal?” (in which the authors apologise for the title but not the questions raised), real-life pen portraits are drawn of patients lying for hours on hospital trolleys, immobile through infection or injury, ignored by staff. Whilst acknowledging contextual factors for poor care, such as a shortage of nurses and resources, the authors argue that circumstances cannot be the sole cause of missed nursing care. 

A report published by the University of Adelaide, School of Nursing, has called for nurses to ‘reclaim and redefine’ the fundamentals of care. It asks whether the cause of the problem (of missed nursing care) lies “deep in the psyche of the nursing profession itself?” “Has something happened to the way modern nursing views and values caring?” it continues. “Indeed, is nursing in danger of losing its claim to care? In the desire for modernisation and professionalisation, have we lost sight of the core values and activities central to patient care? Or is this a broader social pattern where individuals are less inclined to show kindness, compassion, and care for others even if it is a necessary requirement of the job?” 

Compassion, he emphasises, is more than empathy - and way "less fluffy" but much more measurable than kindness. 

Writing in the British Medical Journal, Professor of critical care medicine Peter Brindley and Consultant in intensive care Matt Morgan wonder whether doctors also “too often default to high-tech and low-touch” when patients are dying – a time “when community and connection matter most”. They powerfully begin with a mother’s comment: “Humans are gardens to tend – not machines to fix.” 

Professor Sir Al Aynsley-Green, the first National Clinical Director for Children in Government and former Children’s Commissioner for England, and past president of the British Medical Association, suggests that we as a society need a “momentum for compassion”. Struck by the extremes of compassion witnessed during his wife’s treatment in the last years of her life, Sir Al wants to see a cultural transformation in healthcare: for compassion to be a key operating principle in NHS and care settings, led by the Chief Nurse’s Office; for every organisation to promote the importance of compassion at the professional level; for the views of patients and families to be sought regularly; for much earlier and better focus on compassion in undergraduate and postgraduate teaching programmes for all staff; for compassion to be inspected against by the Care Quality Commission; and for a willingness to encourage staff at all levels to expose poor practice as well as celebrating excellent care.  

Compassion, he emphasises, is more than empathy - and way "less fluffy" but much more measurable than kindness. “It’s putting yourself into somebody else’s shoes – and doing something about it.” Recently appointed the UK’s first Visiting Professor in Compassionate Care at Northampton University, at the age of 80, Sir Al certainly is doing something about it. He has made it his new purpose in life to “embed compassion into every aspect of care”.  

Like Sir Al, Queen Elizabeth II, the UK’s longest serving monarch, espoused compassion, in word and deed. Living a life of compassionate service, the Queen made clear that her Christian faith was her guiding principle. She speaks of Jesus Christ as ‘an inspiration,’ a ‘role model’ and ‘an anchor’. “Many will have been inspired by Jesus’ simple but powerful teaching,” she said in her Christmas Broadcast, 2000. “Love God and love thy neighbour as thyself – in other words, treat others as you would like them to treat you. His great emphasis was to give spirituality a practical purpose.”    

When nurses do unto others as they would have done unto themselves, and act as role model to colleagues, not only do patient experiences of care and their outcomes improve – but so does job satisfaction for nurses: a critical factor in nurse recruitment and retention – the biggest workforce challenge faced by healthcare organisations. Across the UK, there are currently more than 40,000 nursing vacancies, and thousands of burnt-out nurses are leaving the profession early. Whether nurses decide to stay or go is driven in part by their daily experience at work. The late Kate Granger, Consultant in medicine for older people, inspired Compassionate Care Awards in her name, envisioning that such a legacy would drive up standards in care - and surely also help retain nurses, through restoring a sense of pride, achievement and fulfilment to the nursing workforce.  

Review
Belief
Books
Culture
Music
1 min read

Belle and Sebastian's suffering singer on the struggle and the hope

On the edge of ‘Nobody's Empire’: something good will come.

Jonathan is Team Rector for Wickford and Runwell. He is co-author of The Secret Chord, and writes on the arts.

A singer, wearing a hat, pulls his head back holding a note, and a mic.
Stuart Murdoch performs, St. Paul, Minnesota, 2024.
Andy Witchger, CC BY 2.0, via Wikimedia Commons.

Nobody's Empire: A Novel is the fictionalised account of how Stuart Murdoch, lead singer of indie band Belle and Sebastian, transfigured his experience of Myalgic encephalomyelitis/chronic fatigue syndrome (ME) through faith and music.  

The book has two Belle and Sebastian songs as its keystones. The first, ‘Nobody's Empire’, gives the book its title and is a description of how it feels to have ME: 

‘I clung to the bed and I clung to the past 

I clung to the welcome darkness 

But at the end of the night there's a green green light 

It's the quiet before the madness’ 

Murdoch has been living with ME since the 1980s and is an outspoken advocate for those who have the condition. His experience, as described in ‘Nobody’s Empire’, has been that ‘We are out of practice, we're out of sight / On the edge of nobody's empire’. That is also the experience of Stephen, the central character in Nobody’s Empire, a music loving romantic in Glasgow in the early 1990s who has just emerged from a lengthy hospital stay having been robbed by ME of any prospects of work, a social life or independent living. In Glasgow, he meets fellow ME strugglers who form their own support group and try to get by in life as cheaply and as painlessly as possible.  

As the story progresses, he finds he has the ability to write songs and wakes to the possibility of a spiritual life beyond the everyday. Later, he leaves Glasgow with his friend Richard in search of a cure in the mythic warmth of California. Because Murdoch is fictionalising his own experience, Nobody’s Empire offers its readers compelling insights into the experience of ME, particularly the experience of having the condition in the early days when it was little understood. He writes, too, with an engaging ingenuous and childlike curiosity about life and his own experiences. 

Nobody’s Empire adds to the conversation about what faith means to rock’s stars.

The second song ‘Ever Had a Little Faith?’ is included towards the end of the novel as one of the early songs written by Stephen. This song, in which the line ‘Something good will come from nothing’ is repeated, is actually an early Belle and Sebastian song that was only recorded for a later album Girls in Peacetime Want to Dance. It is a song that was inspired by a sermon preached by Rev John Christie, Minister at Hyndland Parish Church in Glasgow, the church Murdoch attends. He has said of the song: "The sentiment was based on a sermon that our then minister, John Christie, preached about simply getting through a dark night, and the hope of morning."  

This Easter morning sense that good will come from the nothingness of being on the edge of nobody’s empire is an experience of transfiguration. Revd Sam Wells, Vicar of St Martin-in-the-Fields has preached perceptively on prayer in terms of incarnation, resurrection, and transfiguration. The prayer of incarnation is a prayer for God to be with us in our difficult circumstances. The prayer of resurrection is a prayer for God to change and fix our difficult circumstances. Then, in response to a possible situation of need, Wells says of a prayer of transfiguration:  

“God in your son’s transfiguration we see a whole new reality within, beneath and beyond what we thought we understood. In their times of bewilderment and confusion show my friend and her father that they may find a deeper truth to their life than they ever knew, make firmer friends than they ever had, find reasons for living beyond what they ever imagined and be folded into your grace like never before. Peel back the beauty and strength of their true humanity, transform and transfigure from this chaos and pain something new, something good, something of life.”   

This is where Stephen’s story and Murdoch’s experience takes us as there is no fix for ME, as for many other health conditions or disabilities, and Stephen/Murdoch ultimately has no desire to be fixed, as ME becomes an important part of identity for them. Instead, Nobody’s Empire takes us up the mountain through Stephen and Richard’s California experiences, as was the case for Jesus and his disciples at the Transfiguration, so we can see beyond and come to know a deeper reality. As Wells puts it, the prayer of transfiguration is to “Make this trial and tragedy, this problem and pain a glimpse of your glory, a window into your world, where I can see your face, sense the mystery in all things, and walk with angels and saints.” 

Faith has featured compellingly in a significant number of relatively recent books by rock stars including, among others, Surrender by U2’s Bono, Walking Back Home by Deacon Blue’s Ricky Ross, and Faith, Hope, and Carnage, the record of conversations by Nick Cave and the journalist Sean O'Hagan. Murdoch’s Nobody’s Empire adds to the conversation about what faith means to rock’s stars and how that is expressed through their music but offers an alternative take both as fiction and as a story in which faith and music combine to transfigure life and ME in ways that enable good to come from nothing: 

“Do you spend your day? 

Second guessing faith 

Looking for a way 

To live so divine 

Drop your sad pretence 

You'll be doing fine 

You will flourish like a rose in June 

You will flourish like a rose in June 

Ever had a little faith? 

Ever had a little faith?” 

  

 

Nobody’s Empire: A Novel, Stuart Murdoch, Faber & Faber, 2024.

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