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
Books
Comedy
Culture
Trauma
5 min read

Miranda Hart's diagnosis of the unseen

Beyond a medical illness she's on to something supernatural.
On a TV chat show, guests look to one of their own talking to the audience.
Mirnada regales a chat show.

There I was, standing in the book aisle with a choice before me. One that would dictate my mental state for the week ahead: I could pick up Boris Johnson’s hotly anticipated autobiography (although, at £30, it would mean putting the bottle of wine in my basket back on the shelf) or I could choose Miranda Hart’s latest literary offering.  

Externally, all seemed calm. Internally, an almighty battle of the books was raging within me. The price of Boris’ ruled out the option of buying both. So, which should I pick? Whose voice should I invite to live inside my brain for the next five days? Both books were offering me a cultural bandwagon to hop on, I just had to decide which wagon looked like the better option.  

Boris… Miranda… Boris… Miranda… Boris… Miranda…  

After some intense deliberation, I popped BoJo’s memoir back on the shelf and became the proud owner of Miranda Hart’s new book. And I must admit, after hearing from friends who chose Boris to be the victor of their own battle of the books, I am very happy with my decision.  

Miranda Hart, the deeply beloved comic actor, sit-com writer, and stand-up comedian, hasn’t been entirely honest with us. For decades, she has been suffering with what she now knows to be Lyme Disease. In her book, she draws back the curtain and reveals a lifetime worth of suffering with illness after illness – bronchitis, tonsillitis, pericarditis, gastroenteritis, labyrinthitis – as Miranda succinctly puts it, ‘too many itises’. Despite illness being her body’s default state, Miranda kept calm(ish) and kept on. That is, until around a decade ago when her symptoms became simply unbearable.  

She tells the story of collapsing onto her living room floor, extreme fatigue rendering her utterly unable to pick herself up. This was the beginning of months of being bedbound and years of having to press pause on her life. Miranda recalls how she wept with relief at being able to crawl to the bathroom, of how she had to watch the television with sunglasses on because of neurological symptoms, and how she would ‘look at a cup of tea on the table and wonder if I had the strength to take a sip’.  She also paints a terrifying picture of not being believed - of living with an illness that nobody can understand, of suffering with symptoms that have no explanation. Miranda contracted Lyme Disease when she was fourteen, and had it diagnosed when she was in her forties.  

It seems that Miranda Hart is trusting that all that she can see is not all that there is – that her suffering is not the truest thing about her and that she doesn’t need to be the source of all of her healing. 

For those with no experience of living with a chronic illness, Miranda’s honesty will open your eyes to the pain and frustration that comes with your body not allowing you to live the life you crave. If you do have experience of chronic illness, this book will make you feel seen. 

But, alas, this is Miranda Hart we’re talking about. If you’re looking for a woe-is-me book, this isn’t it (maybe you’d have more luck trying Boris?). This book is brimming with:  

A) End-of-chapter dance breaks 

B) Jokes about wind (obviously)  

C) Theology 

I kid you not.  

Each of her chapters outline a ‘treasure’ that she has found in the depth of her suffering, the ‘watchwords’ that she uses to encapsulate these treasures are: love, faithfulness, peace, self-control, kindness, goodness, joy, gentleness and patience.  

I got to chapter four of the book and had myself a real – ‘hang on a minute…’ - moment. As a Christian, I’ve grown up with another way of grouping those words together: I call them ‘the fruits of the Spirit’. 

By chapter five I was convinced: Miranda Hart has released a spiritual book.  

She has, quite excellently, trojan-horsed a bunch of Bible into the Sunday Times best-seller’s chart. And nobody seems to have noticed, I almost feel a little guilty for outing her. All the book reviews I’ve read note the hard-won warmth and wisdom included in this book (both of which are there, by the way) and conclude that it is a truly lovely self-help manual. And that’s where they’re wrong.  

This is precisely not self-help.  

In fact, I get the subtle sense that the self-help industry is one that irks Miranda a little bit, and understandably so – the idea that we can ice-bath ourselves into wellness must sound odd to someone who can’t pick themselves up off their living room floor. So, I’ll say it again: self-help is not what this book is.  

Instead, it seems that Miranda Hart is trusting that all that she can see is not all that there is – that her suffering is not the truest thing about her and that she doesn’t need to be the source of all of her healing. She mentions, again and again, that the truest thing about her (and us, her 'Dear Reader Chums') is that she, and we, are loved. Deeply, unconditionally, unshakably loved. We haven’t earnt it and therefore can’t lose it. In her darkest moments, she had lost everything – her career, her social life, her home, her hopes and dreams - but she never lost that love. Everything else she has to say in the book flows from that belief.  

I happen to think she’s dead right – but that is, undeniably, a faith statement. This book is built upon them.  

And listen, you could read this lovely book – giggle and weep your way through it – without ever sensing anything supernatural within it. But, make no mistake, there is the supernatural within it. 

What Miranda has affectionately called her ‘treasures’ and the Bible calls ‘the fruits of the Spirit’ are just that; they’re what grow when one lives a life informed by and infused with God’s spirit. They’re the tangible symptoms of putting yourself in God’s presence, of keeping company with him. They are him rubbing off on us.  

What I’m trying to get at is this: these ‘fruits’, they’re seen in us, but they’re all God. They’re not the fruits of the self and so the way to obtain them cannot be self-help.  

Miranda obviously appreciates that belief in any divine/supernatural/transcendent thing can be complex, that the notion of ‘god’ can come with baggage, and religion can be an all-out no-no. And so, she is incredibly subtle with what she has to say. This book is not self-help, but it’s not evangelism either. She uses her beloved ‘ists’ (phycologists, neurologists, sociologists etc.) to unpack the ‘treasures’/’fruits’, showing how recent research and ancient religion have many of the same things to say.  

And listen, you could read this lovely book – giggle and weep your way through it – without ever sensing anything supernatural within it. But, make no mistake, there is the supernatural within it. From the opening page to the closing one, God’s there, hidden in plain sight.  

I really am unspeakably glad I didn’t pick Boris.