Death of a chronic alcoholic: 'This can never happen again'
Liz Wells held Neil Jones' hand as he lay dying in a room full of strangers at Christchurch Hospital.
Naked, bar an adult diaper, Neil's limbs were twitching in spasms as he lay on the bed, his stomach bloated and distended.
"His eyes were out of focus, rolled into the back of his head," she recalls.
In the end stages of liver failure after years of alcoholism, he was as "yellow as a Minion".
It was three weeks after Wells had trespassed Neil from her home.
Neil's mum, Joan, had called her from Nelson to say they were driving up with Neil's children and asked if she could sit with him until they arrived.
"He was in a room with four or six other patients in it, it took quite a while before they moved him to a room of his own," says Wells. "A gastroenterologist came around, stood at the end of the bed, looked at Neil. I said to him 'do you have a time on his prognosis?' I can't remember his exact words but it was 'I wouldn't think it would be long'. I got the impression it would be a couple of weeks, not realising it was a couple of hours."
When she arrived at Neil's bedside she grabbed his flailing hand and held it.
"He realised someone was there. I said 'Hi, Neil'. He said 'Hi'."
She says the word in a short, sharp way.
"That was the only word he was able to speak... that was probably the last word he spoke actually."
She sat with him for 12 hours, watching his "death throes" in a room full of other patients before he was moved to a room of his own.
His parents and children arrived from Nelson at 3am. Wells said her goodbyes at 4am.
Neil Jones died a few short hours later, at 7am on October 30, 2013.
A GOOD KID
Neil Jones was a big man who worked out and took pride in his appearance.
A former BMX champion and a black belt in karate, Neil took care to dye any grey hairs from his beard and kept his bald head "shiny".
He worked hard to get a degree in computer and information technology. He was a treasurer of a motorcycle club.
Hot, spicy food gave him pleasure. He liked to laugh.
Growing up he was a good kid who didn't smoke or drink.
However, as a young man he fell in with the "wrong crowd".
Those who knew him well say he was "no angel" but he came from a good family who "loved the bones of him".
He and his wife Sally had been together for about 10 years in Nelson with their two children, a boy and a girl, when Sally died of an overdose in 2008.
"It was accidental, not suicide," says a family friend. "She called for an ambulance for herself..."
Distraught by Sally's death, Neil, who already liked a drink, began drinking heavily. He couldn't cope and the two children went to live with his mum, Joan.
"In Nelson I knew Sally more than I knew Neil," says Wells. "Sally was my friend. She was an amazing chick, she was awesome. But obviously she had her problems, too. Whenever I saw her she was bubbly and bright, we'd have a good laugh together. I used to do a bit of cleaning in their house once a week. Sally was the glue of the family."
Wells moved to Christchurch from Nelson 15 years ago.
She'd bumped into Neil one afternoon on a Christchurch street in 2012. She invited him to a get together of mutual friends, sparks flew and eventually he moved into her home. They were together for 15 tumultuous months.
"I'd known him for 20 years, from my Nelson days. I think it was because he was familiar that I got involved with him," she says. "'I told him at the start I didn't want to be with a drunk. He told me he just liked a glass of wine with his meal at night. But it wasn't a glass, it was a 3L cask of red wine every night."
ONE BEER, THAT'S ALL IT TOOK
Neil was sober for five months during their relationship. Wells looks back on this time fondly.
The pair travelled to Nelson together to collect some of Neil's things. It was a chance for Neil to see his children and family but it spelt the end to his temporary sobriety.
"We went to a barbecue and someone offered him a beer. That was all it took."
Wells says that Neil wanted to do something about his alcoholism and she was in regular contact with his family in Nelson about his progress.
"It was quite twisted," says Wells. "He wanted to stop drinking but he needed the alcohol as stopping it could cause his body to go into toxic shock. He was usually too drunk to drive, so I would go to the bottle store or supermarket for him. I bought seven 3 litre casks of red wine, he'd do one of those a day. At one part of it he found there was a $9 bottle of vodka, you could get two bottles for $18, he'd drink two, sometimes three, of those in a day. That was when things got rapidly worse for him."
Seeking help, Neil saw his GP and, in the middle of 2013, he sought further medical help and assistance from Community Alcohol Addiction Services (CADS).
He was assessed as being eligible for treatment but was told he needed to first complete a 10-day medical detoxification before he could be admitted into a residential rehabilitation programme at Odyssey House.
"They took forever to assess him," says Wells. "One department said he should be under psych services, the other alcohol and drug, no-one stepped up and said 'here Neil, we'll fix you'. He needed to be medically detoxed and then have three months of residential rehab but there were no beds available for him until December if not January. He died before that could happen. It was really frustrating knowing he wanted to get help but that his life buoy wasn't there when he needed it."
Dr Alfred Dell'ario, a psychologist and the Clinical Director of CDHB's Alcohol and Drug Service, says the first and most important step in treating alcoholism is for the addict to want treatment.
He adds that the introduction of the Alcohol and Other Drug (AOD) Central Co-ordination Service has "revolutionised" drug and alcohol treatment in Canterbury.
"We worked all last year to get the central service up and running," he says. "I'm not aware of anywhere else in the country which does it this way. It is a co-operative effort involving NGOs and the District Health board and the specialist service where any referral gets immediate attention. That can be a self referral, a GP referral or from another board of health but that day, or within 24 hours, that individual is contacted and from there they can get into the proper treatment."
Dell'ario says that there's a general misconception that alcohol and drug treatment is all about detoxification and in-patient rehabilitation.
"That is a very small part. It is a chronic, relapsing, probably genetically based disease. I like to compare it to diabetes, there is no cure, however, taking certain steps you can lead a full life. We do a lot of home detox in Canterbury, co-operatively through the NGOs. Detox nurses work hard at being available to offer advice to GPs. We also offer advice to public hospital because a lot of people with addictions end up so physically unwell they have to be admitted."
He doesn't think inpatient rehabilitation is necessary for everyone battling an addiction.
"I think we have to be more careful about who we send to inpatient rehabilitation. There's an image you go off to somewhere like the Betty Ford Clinic and you come out," he waves his hands in the air, "and everything is wonderful but there are years and years of follow-up of living with a chronic disease".
Mike Douglas, director of the Salvation Army's Christchurch Bridge services, describes the AOD Central Co-ordination Service as a "successful one-stop shop".
"At the Christchurch Bridge we provide a range of effective evidenced based services for people experiencing harm with alcohol and or other drug addiction. These include courses for people based in the community or residential programmes where people live on site at our centre."
For the year ending June 30, 2017, the Christchurch Bridge, in both its community and residential based services, provided service to 717 people.
Of these people, 42 per cent presented with alcohol as the main presenting issue and 27 per cent presented with addictions to multiple substances. This included the use of and dependence on amphetamines and synthetic cannabis alongside alcohol.
Douglas says that, like other treatment providers, for those seeking help from Christchurch Bridge alcohol remains the number one cause of harm.
"But we are continuing to see an increase in people coming with dependence on multiple drugs including alcohol, amphetamines and synthetic cannabis."
City Missioner Matthew Mark says alcohol or drug dependency, homelessness and mental health problems are "often intertwined". and that the co-operation between NGOs and CDHB has been beneficial for all.
He says that the day-to-day reality of caring for those who are homeless and dealing with addictions is complex.
At the Mission, a lot of men aren't ready to address their addictions but still need housing.
"Those who are homeless or vulnerable and those who are suffering from an addiction of some description... those who are vulnerable in our community, we have seen an increase in demand. Our women's programme is reasonably consistent around numbers at 5 ... our men's facility can have up to 30 men. In the past 12 months we have had a 44 per cent increase in bed nights regarding men," says Mark.
If you compare alcohol dependency to other dependencies, alcohol is "huge" says Dell'Ario.
Ask him for a wish list to improve his professional life and he will smile.
"I don't want a new fancy building or anything like that," he says. "I think the biggest thing is greater public and professional awareness of what is available and an awareness that it is a chronic illness that needs lifelong management."
'I'D HAD ENOUGH'
When Wells came home from work she never knew what she'd find.
Neil would lay in bed all day in a darkened room, drinking.
"While I was at work he would have blacked out, passed out, fallen and hurt himself, a black eye, another broken arm..."
Wells came home one day in October 2013 to find that Neil had taped three steak knives to his hand.
"He wanted me to take him to the police station. He believed they had the house under surveillance, that it was bugged... he could hear a microphone, static noise in the house and that the cops were listening in."
Then she came home to find he'd drawn on his face with a vivid marker and written the word "mad" on his forehead but the word was written back to front - 'dam' - because he'd used a a mirror.
She'd try to kick him out of her house but he'd protest that he had nowhere to go and would just curl up and sleep in her driveway overnight.
"His body and brain were slowly shutting down, he was paranoid and delusional. That's the disease, not only was his liver pickled but his brain was too," says Wells.
On October 8, at the end of her tether, Wells called an ambulance for Neil.
She talks about it now matter-of-factly.
"That was the worst for me," she says. "It was horrendous, I'd had enough. At the time I thought I was getting him help but I was sending him to his death... I started going to counselling through Al Anon, I always had a bit of hope he would beat this and get better and be a father for his children again."
He hadn't eaten for six weeks.
In the week before she called the ambulance, Neil had suffered diarrhoea five times per day and was vomiting often.
"He hadn't showered in 16 weeks."
He'd been lying in a darkened room for so long, it wasn't until the paramedics wheeled him into the ambulance that Wells just realised how jaundiced and "bright yellow" he was.
"He didn't let me open the curtains in the house because he said the light hurt his eyes. Just before he went into ambulance he gave me a hug and a kiss on the cheek. He said 'see you soon' but I didn't plan on seeing him soon. The ambulance took him away and that's when I packed up his stuff and had him trespassed from my house. I thought he would finally get the help he needed to get sober and be a dad to his two kids, that was my motivation."
THE LAST DAYS
Arriving at Christchurch Hospital Neil was severely jaundiced and suffering from alcoholic hepatitis with an enlarged liver.
He was awaiting inpatient detoxification at Kennedy Detoxification Unit.
Despite medical treatment, his health failed to improve or improved to a limited extent.
After two weeks in hospital his condition was said to have "stabilised" and the hospital was looking at discharge options. He consented to be discharged to a drug and alcohol rehabilitation facility but there were no beds available and a waiting time of some months.
Monday, October 28, 2013 was a public holiday. Neil was to be discharged that day but, despite assistance from a hospital social worker, he had nowhere to go.
No-one from the hospital called his parents who say they would have given him accommodation if they'd been asked.
Instead Neil's limited options were contacting the City Mission or staying in a backpackers.
In the days prior to his discharge, he'd suffered from vomiting, ate poorly, spent most of his time sleeping and regularly soiled his clothing.
He had blood tests taken on October 25 but these were not available at the time Neil was discharged.
He wandered the ward in net undergarments having earlier soiled his clothes and was warned by staff about not walking around the ward without pants. He was given pyjamas.
With his attending physician Dr Chapman away from the ward over the weekend, Neil came under the care of Dr Gearry, duty consultant gastroenterologist.
By 7pm on Sunday, October 27, Neil had slept for most of the day. He had a radiology exam at 7.40pm, was noted to be sleepy and with breath which smelled "fecal". He also hadn't eaten for nearly three days, his conversations appeared muddled and he had picked up a cup and spilt water all over himself and his bed and thereafter had been unable to follow the nurse's instructions.
Gearry saw Neil at 9.30am the following day and records: "For discharge today. Patient deliberately incontinent on ward. If does not leave please ask security to escort off premises."
The results of blood tests taken on October 25 were not available at the time Neil was removed from the hospital and were only reviewed in the early hours of October 29.
These results revealed deterioration in his renal function.
Nigel McFall was working as a security guard at Christchurch Hospital in 2013.
"I was asked to escort a homeless guy off site who was refusing to leave," says McFall. "We saw a gentleman who was fluorescent yellow in colour. He looked incredibly sick. I spoke to the nursing staff and let them know the guy was still needing medical attention. She referred us to the doctor who basically said he was fine, he was medically cleared and just looking for a free ride."
Neil was wearing hospital pyjamas as McFall helped him into a wheelchair.
"Oh look, I certainly had my opinion but someone medically competent was telling us that he was all right," he says.
After talking to his colleague, Nicole Park, McFall decided to leave Neil at the nearby bus stop because it was a busy public place.
"Looking back you feel like a human soldier taking someone down to the gas chambers."
In the four years since, McFall has often wondered if he could have done something differently.
"You sort of wonder why you didn't throw him over your shoulders and drive him to Timaru Hospital. As it was happening we just kept thinking that surely, someone is going to see sense soon and help him."
Mere "minutes" after Neil was deliberately placed by security staff at the busy bus stop on a busy road, Park says members of the public were coming into the hospital to say that he needed help and was lying down beside the road.
"Maybe 10 or 15 people came in about him. I was down there at the bus stop often checking on him often, too, and trying to keep him as comfortable as I could," she says.
McFall says that emergency staff became "frustrated" by the number of people entering the hospital trying to seek help for Neil.
"They told us to tell them he was fine and to not be concerned," says McFall. "At the same time I said to everyone if you are concerned please call an ambulance which is what one person did."
At 10am, McFall rang the police himself.
"But they didn't get there until 7 hours later..."
A police officer arrived at the hospital just before 5pm and Neil was trespassed from the hospital.
Hamilton Coroner Michael Robb notes in his released recently report that there is "no evidence that Neil was in any way interacting with staff or members of the public creating a nuisance or disturbance".
The officer too expressed his concern about Neil's condition but was assured he was fine and had been discharged.
A police spokesperson said that "police acknowledge the Coroner's findings".
"In regard to this matter the decisions made by police at the time were based on the information provided to officers at the hospital."
The two constables who took Neil to the City Mission also observed that he didn't look well, he had a yellow tinge to his skin and that he appeared to be in pain as they moved him into the patrol vehicle.
McFall claims that someone from the hospital rang ahead to the ambulance service and told them not to respond to a callout to Neil, an allegation the Christchurch District Health Board (CDHB) strongly denies.
"Every service you would count on in an emergency was contacted and none of them responded with the appropriate action," says McFall.
'HE SMILED AT ME'
Stephen Creek was on duty at the City Mission when Neil was brought in by police.
Creek's role was to look after everyone, to ensure that they were warm and fed, and to admit and discharge people in and out of the mission.
Police told him Neil had been trespassed from the hospital.
As police couldn't arrest Neil, they'd brought him to the night shelter.
Creek agreed to take Neil in on the understanding that if needed the police would return and he would be taken either to psychiatric services or the hospital.
With colleague Murray Hughey, Creek tried to get a response from Neil for 45 minutes without success. He would not eat, was barely awake, unresponsive and only able to mutter his first name throughout his assessment.
At 7pm, Creek phoned the police to request they return to the mission and was told they would get someone there as soon as they could.
At 9pm, police had still not arrived.
Neil began vomiting blood and Creek phoned for an ambulance.
While he was waiting for the ambulance Creek cared for Neil as best he could.
He remembers Neil staring up at him as the sirens grew closer.
"He smiled at me."
Neil's death was recorded as alcoholic liver disease. There was no opportunity for a post-mortem examination. Coronial jurisdiction was only taken after family members raised concerns over Neil's medical care.
In his inquiry into Neil's death, released this month, Coroner Robb writes: "Neil's death was caused by alcoholic liver disease. His discharge, resulting lack of medical evaluation and treatment, coupled with what took place for Neil through October 28 until he was readmitted to hospital that night, may not have caused his death but did not enhance his chances of survival."
He added a comment around Dr Gearry's belief that Neil's problem was behavioural and that he was being "deliberately incontinent".
"That determination in large part led to the manner in which Neil was dealt with from that point through to his being returned to the hospital in an ambulance."
David Meates, CDHB chief executive, says he has personally apologised to Neil's family.
"Unfortunately it's only recently that the full extent of the failures in our treatment and care of Mr Jones have come to light, and the Coroner's report makes sobering reading," he says.
Meates says he is satisfied that changes made to improve systems and processes at the hospital would not allow a repeat of the "unfortunate chain of events" which prevented Neil from receiving further medical treatment sooner, and "didn't allow him to die with dignity".
He said that changes included patients not being discharged unless they had suitable accommodation and the Speak-Up training and process where all hospital staff, "particularly nurses", are encouraged to speak up and raise concerns if they are worried about any aspect of a patient's care.
The trespassing of patients "rarely occurs these days", Meates says, and requires the approval of the hospital general manager.
Dr Gearry has also personally apologised to Neil's mother, and expressed his sympathies to her. He has said with the benefit of hindsight there are things he would do differently today.
The treatment and care provided to Neil is still the subject of an investigation being carried out by the Health and Disability Commissioner. Until that report is released, Meates says it would be inappropriate to make any further comment.
"I'm speaking out for Mrs Jones," says Liz Wells, who sat with Neil for 12 hours on the day he died. "No mother should have to go through that, knowing that their child has been refused the help that they need and to be left at a bus stop critically ill."
Wells pauses and her voice becomes stronger: "Homeless man left to die at bus stop seems to be the headlines but I'd like to add he was a son, he was a brother, he was an uncle, he was a father, he was a friend. There was a lot more to Neil than just being a homeless alcoholic. He came from a good family... I'm telling Neil's story so no other family in New Zealand has to experience what happened to him."
Neil's sister, Karen, agrees: "I just hope no-one has to go through what my Mum had to and if it wasn't for her fighting for some kind of justice this would never have come to light."
On the day Neil died, his family including mum Joan, and his children, drove through the night from Nelson to his bedside. They arrived at Christchurch Hospital at 3am.
Neil David Jones died at 7am on October 30, 2013. He was 47.
Wells says the children saw their father dying and it was "horrendous".
"They lost their mum when they were little and now their dad's gone too. He was a dying, fat-looking wreck of a man in a bed not knowing who he was or what day of the week it was, that's what his children saw the last time they saw their dad."
Joan Jones has fought fiercely to seek justice for her son. Her priority now is making sure no-one else suffers as Neil did.
"This can never happen again."
Where to get help
Alcohol Drug Helpline (open 24/7) - 0800 787 797. You can also text 8691 for free.
Alcoholics Anonymous - 0800 229 6757
Lifeline (open 24/7) - 0800 543 354
Depression Helpline (open 24/7) - 0800 111 757
Healthline (open 24/7) - 0800 611 116
Samaritans (open 24/7) - 0800 726 666
Suicide Crisis Helpline (open 24/7) - 0508 828 865 (0508 TAUTOKO). This is a service for people who may be thinking about suicide, or those who are concerned about family or friends.
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