Liverpool Care Pathway – A Health Disservice

"David Haycox, spokesman for Mid Staffordshire NHS Foundation Trust, said: ‘The Trust has improved significantly during the past four years and we would refute any claim that no improvement has been made in the clinical care of our patients.’Meanwhile, Julie hopes the vision of the sheer terror she saw in her mother’s eyes before she died might leave her. ‘I can’t think of the happy times I had with Mum,’ she says. ‘That memory overshadows everything.’"

From Ward To Whitehall: The Disaster at Mid-Staffs by Julie Bailey is available from Amazon and www.curethenhs.co.uk.

This is MailOnline –

Daughter whose vigil for her dying mother exposed hospital of horror

By FRANCES HARDY

PUBLISHED: 22:36, 14 November 2012 | UPDATED: 09:03, 15 November 2012

Julie saw how the heroic kindness of a few good nurses and doctors was over-ridden by the careless, the bullying and power-hungry

The room was grubby, cramped and windowless, and Julie Bailey had been summoned to it by a hospital doctor. He clicked his fingers to demonstrate how swiftly her mother’s condition could decline, warning that the end would not be merciful. ‘Your mother will die a painful death,’ he said. ‘It is best that you leave her here with us.’

She did not hear the medical explanation that ensued. She was mute with shock; confounded. Then the doctor slid a piece of paper towards her. It was a Do Not Resuscitate form. Quietly but firmly, he urged Julie to sign it. Suddenly she was alert, defiant. ‘Of course I will not allow my mum to die!’ she said, refusing to sign the form.

For Julie, 50, a café owner from Stafford, the incident was pivotal. It marked the moment when she resolved that she would never again leave her mum Bella, 86, alone in the hospital; the moment her faith in its staff evaporated entirely.

‘Before I left the room, I told the doctor: “As long as my mother is in this hospital, she will have her family with her. I have no trust in you. She is not safe here”,’ Julie recalls.

Thereafter, for the next eight weeks until Bella Bailey did indeed die, with a degree of pain and terror that could have been avoided, her daughter remained at her bedside, day and night.

On the rare occasions when Julie — a divorcee and mum to Laura, 23, and Martin, 33 — left her post to go home for a night of unbroken sleep, other family members rallied.

And during the round-the-clock vigil, the scenes she witnessed were harrowing. The ward was filthy; patients sounded their buzzers in vain. Julie, unable to ignore the chaos, stepped in. ‘I emptied a bowl of vomit; scrubbed blood from walls; helped a patient onto a commode. I washed faeces from the hands of one elderly woman who had been left in the same soiled clothes for four days.

‘There was one confused patient who was so parched with thirst because she had no water that she drank stagnant water from flower vases.

‘The neglect was not down to staff shortages, though — it was caused by apathy and ignorance. 

‘When I went to the nurses’ station, they did not raise their eyes from the computer screen when I spoke to them. I was hesitant about interrupting them until I realised they weren’t working — they were on eBay.’

Julie saw how the heroic kindness of a few good nurses and doctors was over-ridden by the careless, the bullying and power-hungry.

Now she has written a book which records the horrors and indignities her mother, who lived with her for three years before her admission into hospital, endured during the final two months of her life.

It also charts her subsequent campaign to uncover the truth behind the culture of negligence at Stafford Hospital, run by the Mid Staffordshire NHS Foundation Trust.

Happy times: Bella and Julie at a cafe at Cannock Chase in 2007 before Bella's hernia 

developed and she was admitted to Stafford Hospital

Two years ago, the Healthcare Commission — stung into action by her campaigning — reported that between 400 and 1,200 people may have lost their lives at the hospital between 2005 and 2008 because of ‘appalling standards of care and chaotic systems for looking after patients’. A full public inquiry was commissioned and its findings will be reported in January 2013. Meanwhile, other aggrieved relatives have joined Julie’s campaign group, Cure The NHS, which aims to prevent others from suffering the lack of care and indignities she witnessed.

Her mother, Bella, was one of a rare breed: a stoic, redoubtable woman who raised her five children alone after her husband deserted her, and held down four jobs to ensure her family was fed.

‘She would go without herself to help a friend in need,’ says Julie. ‘She was strong and uncomplaining — she never made a fuss — but I will never forget the look of sheer terror in her eyes just before she died. She was frightened of the people who had been charged with caring for her.’

Bella was admitted to Stafford Hospital on September 25, 2007 — she had a hernia and had been sick so repeatedly that her GP had called an ambulance.

Julie was hesitant about interrupting the nurses until she realised they weren't working - they were on eBay

For the first three nights, Julie left her mum in the care of the hospital. Quickly, however, her misgivings grew.

‘Mum told me that she called out for the staff during the night but they ignored her,’ she recalls. ‘I found it hard to believe, but then she said she’d had to be sick on the bed sheet because she didn’t have a bowl. She was mortified. She said: “I didn’t want the nurses to see that I’d been sick on those clean sheets — and the smell was terrible.”’

Julie hoped this lapse was an aberration. Soon, however, she realised it was the norm. When Bella was moved to another ward, Julie asked pleasantly if her mum could have her pain relief and antibiotics, which were overdue. The snapped response startled her. ‘We were ready to give your mum her drugs at teatime. It’s not our fault you weren’t here. [Bella had been moved temporarily to another ward, and the nurses hadn’t kept track of her.] She’ll have to wait for the night drug round now,’ Julie was told. She felt — unjustifiably — embarrassed. To distract herself, she wiped the ‘filthy’ bedside cabinet with wet tissues, wishing she had the luxury of bleach.

What she heard next appalled her. The ward manager started to hector the patient opposite, who had complained of being in pain, shouting at her that there was nothing wrong with her. The woman curled into a ball and sobbed. 

It was 11pm before Bella got her drugs. ‘Aren’t nurses supposed to be caring, kind, selfless people?’ says Julie.

The following day, she noticed that no one answered the patients’ call bells that buzzed incessantly.

She helped a woman on and off her commode. Having worked as a care assistant while a student at Swansea University, she knew how to do this safely. (Later she had worked with people with dementia-type illnesses and as a senior practitioner with a social work team: these skills also came in handy.)

It was on the fourth day after her mum’s admission, her worries accumulating, that she resolved never to leave her side. She napped for a couple of hours a night on a plastic chair — later, one of the kinder nurses found her a reclining one — and tried unobtrusively to bring order to the mayhem around her.

‘During the next weeks, I found several patients lying on the floor,’ she recalls. ‘They’d struggled to go to the toilet after fruitlessly ringing their buzzers for so long. They’d tried to manage alone and they’d failed, so I helped them.’

Julie's mum was petrified- a strong, vibrant woman robbed of dignity and left begging 

for her life: Bella aged 80 at home listening to music

Julie knew her position was a precarious one: she could have been asked by the hospital to leave at any time. So she did not question the parlous lack of care on the wards — resolving to make her complaints later — because she just wanted to ensure her mother’s last days on earth were as comfortable as possible.

By now Bella was being fed by a tube. Routinely it got blocked — which meant she was receiving no nutrition — yet Julie was scared to alert the nurses, many of whom railed and snapped at relatives if they made requests or questioned their authority. She waited until the drug trolley did the rounds before she asked for help.

Meanwhile, the patient opposite was screaming: Julie was loath to incur the wrath of the nurses by asking them to bring pain relief for her; the screaming continued.

At night, she dreaded the ‘wanderers’; confused and vulnerable patients who milled around aimlessly until, at around 10.30pm, porters were summoned to manhandle them back into their beds. One night her mother was unnerved by one such stranger who loomed over her bed. ‘Come with me,’ Julie improvised, taking him to the drinks machine and distracting him with a cup of tea.

WHO KNEW?

Of the 500,000 deaths in Britain each year, 60 per cent occur in hospitals — but only eight per cent of people would choose  to die there, a study found.

A few nights later, in the early hours, Julie watched as an elderly patient installed himself at the deserted nurses’ station, shuffled some patients’ papers and brazenly smoked a cigarette. 

On another occasion she walked past a lavatory cubicle and saw a man urinating. Later she realised the cubicle had no door; it had presumably been broken but not replaced.

‘Although it was uncomfortable for me to stay with Mum, not once did she ask me to leave, which was unusual because she was always so selfless and concerned about others,’ says Julie. ‘She obviously didn’t feel safe to be left in the ward alone, which spoke volumes for a woman with her grit.’ Although Julie had been told to abandon hope, after two weeks there was cause for optimism. A doctor — who was far more compassionate than the previous ones — presented a plan for Bella’s care. He suggested fitting a special feeding tube to by-pass her hernia. Bella agreed to the operation.

As blood was taken during the pre-op procedure, it spurted out. ‘There was a terrible mess and although the nurse was apologetic, she walked away and I spent all afternoon cleaning it up,’ says Julie.

By now Julie had become accustomed to ward procedures. She knew that water jugs were taken away for sterilisation at night; leaving many patients without a drink. After she saw one drinking, repeatedly, from a vase she rinsed them and filled them with clean water. She routinely observed acts of thoughtlessness. An elderly bed-bound patient, ‘quiet and timid as a mouse’, waited several hours for a drink, then the nurse placed it out of her reach. When she cried out in desperation, she was chastised like a naughty child.

Julie vowed, on only the fourth day after her mum's admission that she resolved never

 to leave her side, napping on a chair by her bed

Julie evolved a nightly routine. ‘I pulled the curtains all around the bed and secured them with a bedside table, the bed and my chair. I did this because I’d woken to find a man standing over me, vulnerable, confused, but still enough to frighten me,’ she recalls.

One night, Julie was startled by a violent male patient who, without warning, meandered into the ward and threw a table across the room. Julie placated him and ushered him outside to have a cigarette.

When she reported the incident, she was merely told to wedge a chair against the door to stop him getting in again.

Bella’s operation, meanwhile, which took place three weeks after her admission, was a success.

Julie was taught how to connect her mother’s feed bag, and Bella’s health began to improve.

Indeed, her doctor said her hernia might shrink, and she might be able to eat normally again. Two weeks later, Bella announced she was hungry: it was wonderful evidence of her recovery.

She said she would like some soup; delighted, Julie suggested warming up a can in the patients’ kitchen microwave.

Here, however, she encountered a nurse she had identified as a bully and dubbed Nurse Ratchet.

 'My mother's eyes met mine for the very last time, and the look in them haunts me still. My mum was petrified: a strong, vibrant woman robbed of dignity and left begging for her life.'

‘Due to health and safety regulations, I’m unable to allow you to use the microwave,’ the nurse declared smugly. ‘You could make it too hot and scald your mother.’ The same rule, she said, forbad soup being brought from home.

Julie’s blood boiled, but she subdued the impulse to bite back and merely phoned her niece, Samantha, Bella’s eldest granddaughter, asking her to smuggle in a flask of hot soup. She did so, and Bella drank it with relish.

To everyone’s delight, she continued to improve: six weeks into her hospital stay, she was told she would go home in four days.

But there was a setback. Bella’s discharge was delayed because she needed a nebuliser to administer medication. Julie was deflated, but returned home to prepare for her mother’s return, and Samantha took over the watch. While she napped, Bella needed the commode. However, a healthcare assistant who tried to move her dropped Bella, and Sam was jolted awake by her grandmother’s screams.

Julie described the next ten days as ‘sheer hell’. Bella’s condition deteriorated sharply. She was given a blood transfusion and prescribed a drug to help her breathing because she was literally gasping for air.

But the drug didn’t arrive and the autocratic ‘Nurse Ratchet’ was on duty when Julie begged her for the drug. ‘I am in charge of the ward and I make the decisions,’ the nurse snapped, and refused to give Bella the pill.

Julie recalls: ‘I’m not a violent person, but I wanted to crash the table over her head for all the misery she had caused.’

Bella, here age 86, died, with a degree of pain and terror that could have been avoided, 

and her daughter has now written a book about her experience in the hospital

Instead, she turned her eyes to Bella’s. ‘They met mine for the very last time, and the look in them haunts me still. My mum was petrified: a strong, vibrant woman robbed of dignity and left begging for her life.’

Bella died on November 8, 2007, and Julie’s grief was compounded by the knowledge that her mother could have had a better death, had she only been given care, kindness and a drug that might have eased her fear and pain. Five years on, Julie campaigns in memory of the mother she loved so dearly, so that others do not suffer as she did.

Despite everything, however, she says little at the hospital has improved. ‘Lessons have not been learned. Only the other day, I was told, a patient was left on a commode for three hours.’

However, David Haycox, spokesman for Mid Staffordshire NHS Foundation Trust, said: ‘The Trust has improved significantly during the past four years and we would refute any claim that no improvement has been made in the clinical care of our patients.’

Meanwhile, Julie hopes the vision of the sheer terror she saw in her mother’s eyes before she died might leave her. ‘I can’t think of the happy times I had with Mum,’ she says. ‘That memory overshadows everything.’

From Ward To Whitehall: The Disaster at Mid-Staffs by Julie Bailey is available from Amazon and www.curethenhs.co.uk.

Additional reporting:  MARTYN HALLE