What the NHS needs even more than money – a dose of kindness

Published in The Daily Mail (December 5th, 2012)

Even today, 19 years on, I can still remember every second of the day my world crashed in. It was a wintery evening in the run-up to Christmas, and my new daughter’s eyesight did not seem to be functioning. She was having tiny spasms, so we took her to see a doctor.

As the ophthalmologist tested her eyes, my gorgeous little girl had a seizure, the biggest yet of her eight-week life. The doctor stroked her hand throughout, then said softly that we should go to see a paediatrician round the corner. Straight away.

This next doctor, a warm and friendly man in his 50s, asked us a barrage of questions as he examined our daughter. Then, in the gentlest way possible, he broke the news that changed my life. ‘I am afraid it appears that she is profoundly brain-damaged.’

These were the bombshell words feared by every parent. They exploded in my head; the ricochets are still  felt today. 

The one small solace was that these two fine physicians could not have been more sensitive to our trauma and more caring to our tiny child, looking so sweet and innocent in her carrying seat.

In my naivety, I assumed these were the noble professionals that populated the National Health Service, kindly servants of the state concerned solely with the care of their patients. The sort of people I had grown up seeing in dramas such as Dr Finlay’s Casebook.

Alas, how wrong I was. For over the past two decades, my family has made the painful discovery that such sensitive souls are the exception rather than the rule. 

All too often, we have seen the dark side of the health service: doctors deceiving us and making potentially fatal mistakes; nurses too busy chatting to bother with a child in intense pain; receptionists displaying astonishing rudeness.

The last visit to a major teaching hospital was typical. A fresh-faced young doctor who had not read the notes, wrongly claimed our daughter’s seizures were controlled and then waved goodbye to her, despite her blindness. Until then he had totally ignored his disabled patient, speaking only to her mother.

So I am delighted that — at last — there is official acceptance something has gone disturbingly astray in the health service when the most vulnerable patients are routinely failed in the most shocking ways imaginable. 

Recognition of a problem is, after all, the first step to recovery.

First Jeremy Hunt, the new health secretary, condemned the ‘normalisation of cruelty’ in institutions supposed to be founded on compassion. In a strong speech last week, he hit out at the ‘coldness, resentment, indifference’ shown to too many patients.

Now Jane Cummings, the chief nursing officer for England, has admitted there is too much poor practice, saying that far greater emphasis should be placed on delivering a culture of better care.

These statements mark a significant breakthrough, a belated recognition that inadequate — and sometimes grotesquely inhumane — care is corroding faith in the NHS. The proportion of people saying they are satisfied with the service has seen its biggest drop in 30 years. 

When I first started raising criticisms of poor care a decade ago, I was flooded with letters from families who had endured similar distressing experiences. It was clear that widespread failings were being ignored by the medical and political establishment.

Yet while politicians often privately admitted they shared my concerns, they confessed it was taboo to say anything in public that could be seen as even mildly critical about the sacred health service. 

My own family’s experiences are mild compared with many. A series of shocking scandals and damning reports have revealed how the old, the incurably sick and the disabled have suffered intolerably in places designed as sanctuaries of compassion.

Many of the victims are elderly people. In the worst case, hundreds died from starvation, dehydration and neglect in two hospitals in mid-Staffordshire. Some were so thirsty they drank water from flower vases; the families of others were forced to take soiled sheets home to wash.

Then there are those with cancer left in agony as they bled on their bedding, the terminally ill patients whose pleas for pain relief went unheeded, the 100 people with disabilities dying from medical indifference, the adults with learning difficulties beaten in so-called care homes.

Spot-checks have found levels of neglect in one in five hospitals so extreme they were in breach of the law. Little wonder the Patients’ Association has seen a 50 per cent rise in complaints over the past two years.

Just consider this single nugget: last year, 78 people died from bed sores in British hospitals, something that should be unimaginable in a 21st century health service. 

As Mr Hunt said so rightly, there is a depressing regularity to these stories of failure that so betray the majority of highly dedicated health workers.

The big question is how to cement care and compassion into the foundations of the health service? These failings, after all, emerged at a time of increased spending.

Clearly, the Whitehall obsession with targets and systems has distorted health priorities and care, with hospitals encouraged to focus on numbers and outputs rather than the patients at the heart of the system.

At the same time, too much power was handed to often poor-quality managers with minimal medical knowledge, increasing the bureaucracy but decreasing the standards of care. 

Many doctors might be academically brilliant but are devoid of all-important empathy, while it is increasingly acknowledged the shift to graduate nurses has led to a deterioration of care in the wards.

To make matters worse, there has been serial bungling from the Care Quality Commission, the super-watchdog created in 2009 from the foolish merger of three separate watchdogs. 

This vast quango oversees everything from dentists and GPs to hospitals and adult social care. It is clearly not up to the task, as shown by the scandal when Winterbourne View, a Bristol residential care home, failed to act after a whistleblower raised concerns over bullying of people with learning difficulties.

On top of all this we have an outdated health service built around the priorities of the post-war era, when the battles were against infant mortality, infectious diseases and industrial injuries and fought in huge hospitals filled with the latest technology.

Today our needs have changed, and the NHS is struggling to cope. There is an ageing society, with rising incidence of long-term conditions such as cancer, diabetes, dementia and depression needing often complex treatments based in the home and local communities.

It is far from a uniquely bleak picture, of course. Some hospitals are picking up tips on improving customer satisfaction from the business world — although visiting a car plant earlier this year, I was struck when one manager said her former job in the NHS felt far more like working on a production line.

Others are placing renewed emphasis on the importance of communication with patients and listening to their needs. 

But even taking all these factors into account fails to answer the most profound questions over wider attitudes towards the old, the sick and the disabled that these failings raise.

Ultimately, what sort of human being can ignore an old woman begging for food, leave a distressed man with dementia in soiled bedding or fail to act when a disabled person is being bullied?

These are not matters of money, of systems, of training. These are at heart issues of common humanity — and that is why they may prove such a struggle to solve for society.

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