A sometimes hard to read article in Toronto Star telling the story of Kit Skelly and the impact on him and the whole family of what all too often happens when people look to the healthcare system for help.
A life of promise and hope reduced to a single, stark and soul-less choice
This is a story of what the “healthcare” system offers: a life of much promise and hope drained of humanity and reduced to a stark, soulless choice – keep taking the pills or go back to the street: it’s your choice.
A funny, artistic, lively kid, “our sweet boy” who wanted to be a doctor began to experience difficulties at University: a psychotic experience led to him finding him with arms and legs restrained in a hospital emergency room; then diagnosis, morning pill, evening pill, the derogatory voices held at bay and compliance established.
Followed by years of Guess-The-Diagnosis, experimenting with medications-trail-and-error: first guinea pig; then drug zombie; … which drugs shall we try? – oops wrong again! never mind, try this one….trust me I’m a doctor; just keep taking the medicine; just make sure he keeps taking the medicine… If you’v been ther you know painfully well how it works.
As the headline says, Medications alone are never the answer– so why do we pump so much money into a system that has only one tool, one idea?
If medications alone are never the answer, then …
- …why is that all we’ve got?
- …why are some many resources put into forcing compliance with medications- including coopting families into the painful role of enforcer?
- …isn’t it time we offered other kinds of support?
There’s a parable/ fable/ proverb….
If the only tool in your toolbox is a hammer then everything starts to look like a nail.
Medication is our healthcare system’s Maslow’s Hammer – and a dirty great big one. The system looks for nails to bash with its hammer it sees every instance of human distress frailty and difference as a nail that needs hitting with a hammer blow.
To them, when we come through their door we’re asking for their hammer.
When that nail or a new nail pops up again the system brings out the hammer and the hammer blow gets harder and the system looks for a bigger hammer. When the drugs don’t work – and the patient does not comply – the system calls its friends to find a bigger hammer.
It’s time to get some new tools- time to offer more than medications and compliance.
We call this: “healthcare”?
The World Health Organization tells us that one of the key predictors for not recovering from serious mental health is living in a western society where the prevailing understanding of mental illness is a medical one – and where the dominant model of treatment is medications. So that’s US, Canada, and a few other countries. There are other ways many so-called “third world” countries do better.
This is a tragic story of how one family seeks help for their distressed son from a system clearly bereft of ideas beyond medications that deputizes them as some kind of pill-police, the in community compliance squad, and offers not much real help or hope, and little by way of healing.
And when one pill doesn’t work, the system turns to the next, till six different pills later [and a few docs too] the new, latest, ‘much better’ pill doesn’t “work” either and the system decides that only a monthly injection can force compliance. Since they know they have no cure they insist on our compliance, rendering us as powerless supplicants is what passes for “treatment” and “service”.
This is a single story that illustrates only too clearly how our prevailing approach to mental illness operates – it helps some but fails most.
This tragedy for one family is, sadly, all too common a tragedy for many others too. It has become an epidemic- one created by the medicine that was meant to help – and one told by Robert Whitaker in Anatomy of an Epidemic.
Perhaps the real tragedy is that we do this in the name of “healthcare”?
Time for real change…
there are many links to resources beneath the extract below…Extract Article in Toronto Star Wed 20 May 2012 Jennifer Pagliaro Staff Reporter
Mental illness: Medication alone isn’t the answer
He was their sweet boy with the impish grin, tousled bangs and piercing blue eyes.
As a child, Kit Skelly identified strongly with Peter Pan. During trips to Georgian Bay, he would climb up rocks then leap off, giving his parents a fright as he tried to fly.
Funny, artistic, happy. That’s how Lesley and David Skelly would have described Kit even four years ago.
Certainly not sad, scared and paranoid, never mind schizophrenic.
But before their world unravelled, before Peter Pan was made to grow up, they were just Mom and Dad.
Now the couple are primary caregivers to the 23-year-old, whose mind is overwhelmed by the voices and delusions that cloud his grip on reality. Burdened with administering Kit’s medications, the Skellys struggle to hold their family together and find support from the health-care system.
THE QUIET middle child of three, Kit spent his adolescence in the family’s red-brick Leaside home, sleeping in a top-floor room his parents have left mostly untouched — a bed, bare walls, with stacks of biology texts under a skylight.
(Kit declined requests to be interviewed, but allowed his parents to tell this story.)
Kit always knew he wanted to be a doctor, his ambition spurred by the death of a close friend.
“He just wanted to make sure no one else got sick,” says Lesley, a longtime Girl Guides leader and the family’s storyteller.
As a second-year biology student at Guelph University, Kit had his first documented psychotic episode in November 2008. He ended up in a Toronto emergency room, arms and legs in restraints after assaulting a security guard during an attempt to escape.
In the year after his diagnosis, as long as Kit took an antidepressant pill every morning and an antipsychotic every evening, he had no more episodes and the voices that still tell him he is worthless were at bay.
“He was very compliant in the beginning,” Lesley says.
He went back to school part-time, commuting to Guelph once a week before transferring to Ryerson as he sought a new normal.
Though doctors had diagnosed Kit immediately with a mental illness under the schizophrenia umbrella, they now believe he may actually have schizoaffective disorder, which includes the loss of reality associated with schizophrenia and mood disturbances typical of bipolar disorder.
Four years after his first psychotic break, Kit is on his sixth antipsychotic drug.
He believes he is living in a virtual world, a video game over which he has no control. He still hears voices, although they can be quieter at times.
The Skellys have watched as each medication failed to stop the delusions skewing their son’s reality.
This is the typical cycle for many families: there’s no quick-fix medical solution for mental illnesses. They require trial and error, experimenting with different drugs and dosages to see what will halt a person’s delusions without significantly affecting quality of life.
Still, medication is widely considered a cornerstone to coping with mental illness. For people like Kit who have a serious chronic illness, finding prescriptions tailored to their needs can be like shooting in the dark.
For the estimated 3 per cent of the world’s population who will experience severe mental illness, research indicates the path to recovery is different for each person, often requiring day-to-day management.
In the year after his first episode, it became a daily struggle to convince Kit to take his medications. He was adamant the drugs were making him worse or — since he didn’t think they were real — that he didn’t need them.
“The stress for us at the time was being the pill police,” says David. He’s tall, and his hair curls like Kit’s does.
“He became honestly like a magician,” David says.
The Skellys would tell Kit to open his mouth so they could make sure he wasn’t hiding his pills under his tongue. But Kit could slip them into the crevices of his mouth, or into his pocket only to stash them in his bed.
Sometimes when he did swallow his pills, he’d force himself to vomit.
David also became fixated on trying to correct his son’s delusions. One day, while sitting in the living room, Kit pointed out the picture window and described the dinosaurs floating out behind the trees — David soon realized there were some arguments not worth having.
Some of Kit’s concerns about his medications were valid. He faced severe weight gain, drowsiness, tremors, restlessness and loss of motivation.
Since starting treatment, Kit has lost his motivation, doing little more than more than eating McDonalds meals and playing computer games.
“He just sits in his room,” Lesley says.
KIT’S difficulty with medication is no surprise to most experts.
“Evidence and scientific understanding allows us to narrow in on the types of medication that we think are going to work,” says Dr. Ian Dawe, physician-in-chief at Ontario Shores Centre for Mental Health Sciences, whose 20 years working in an emergency room gave him a front-row seat to the revolving door of the mental-health system.
But he says health-care workers are just scratching the surface of caring for patients with these kinds of unique brain chemistry and genetics.
But medication is widely believed to fight only half the battle, with community support and psychosocial interventions playing a key role in recovery.
“The more you build in those supports, the more you’re likely to see better medication compliance,” says Steve Lurie, executive director of the Canadian Mental Health Association’s Toronto branch.
A new generation of psychiatric drugs, produced over the past four decades, is better than the previous class at treating illness while preventing relapse.
Yet some studies suggest there’s little improvement in compliance with schizophrenics taking the new drugs.
In some regions of Ontario, as many as 30 per cent of people with complex mental illness are living with their parents or relatives, according to a 2006/2007 study of Assertive Community Treatment teams, which provide comprehensive case management.
The responsibility of administering a drug falls on those families.
Until recently, that would have included the Skellys, but they are no longer Kit’s pill police.
If Kit stays on his newest medication, an injection administered once a month, they may never have to be again.
Kit has received the $500 shot — paliperidone palmitate, better known by trade name Invega Sustenna — for the past six months at Sunnybrook Health Sciences Centre.
After difficulties with the same medication taken in the backside, a friend of the Skellys told them the needles could be administered in the arm — something professionals at the hospital didn’t know about. Kit was the first patient to receive that treatment at Sunnybrook.
DANNY Ciarafoni reaches for the photos of his smiling grandchildren propped up on his kitchen table. Their cherubic faces keep him going.
His wife, Cindy, who the Star wrote about in January, tragically died at 48 after being hit by a car in the middle of Hwy. 7.
She had been diagnosed with schizophrenia 25 years ago.
Ciarafoni said they’d tried all the newest medications, which he organized for his wife in a pillbox — eventually amounting to more than $1,000 a month. His insurance covered only $2,500 per year.
In the last three years, Cindy’s health deteriorated. She refused to take her medications regularly, and she was hospitalized about once a month during six-month stretch.
Ciarafoni worked hard to support his family, and his adult children assisted when they could. But there was no one to help ensure Cindy took her medications consistently.
As he recalls the people who told him his wife was too sick, beyond help, Ciarafoni clenches his fists. On his flexed forearm, a newly inked praying angel outline becomes visible, the word “Cindy” emblazoned beside it.
“The whole system’s broken. It doesn’t work,” Ciarafoni says during an interview in his Woodbridge home. Behind him is the garden he built for Cindy, a nurse.
When Cindy was taken to hospital in distress in January, hospital records show she was never assessed by attending physicians, and her family believes she walked away without being noticed.
Three months later, her own family doctor had no idea she had died.
“They’d always tell me there’s no real solution,” Ciarafoni says. “There’s no answers. There’s no help.”
IN LATE 2009, more than a year after Kit’s diagnosis, the Skellys realized he hadn’t been taking his medication consistently.
Kit had become agitated again and quick to anger.
His psychiatrist told the Skellys to set rules and stick to them. If Kit refused to take his medications, he couldn’t live at home, where they were also raising his teenaged sister.
The two siblings were always close but, over time, they realized Kit wasn’t the only child they had to protect.
When the Skellys set the rules, Kit still refused to take his medications. When they asked him to leave, he wouldn’t.
So they made the painful decision to call the police, who brought Kit to the Centre for Addiction and Mental Health.
When he was discharged days later, the Skellys arrived with a bag they’d packed for him and gave him another choice: come home and take his medications or be dropped off at a shelter.
Kit chose the shelter.
Since then he’s been in and out of hospital, between shelters and home, taking his prescribed drugs sporadically as well as illegal substances.
Kit now lives in the basement apartment of his 25-year-old brother’s home not far from his parents north of Toronto. The Skellys visit him throughout the week to take him to visit his psychiatrist or for medications, often bribing him with lunch. Sushi is his favourite treat, one of the few he still enjoys.
They’re lucky now if they can even convince him to go for a walk. The dreams they had for their son are gone.
“He will never be a doctor,” Lesley says.
He’s forgotten how to fly.
“We lost our son,” Lesley says. “He died.”
ELGIN Barrett, 42, who lives with bipolar mood disorder, struggled to stick with his medication regimen while supporting his wife and young daughter.
Misdiagnosed with schizophrenia at 21, he was embarrassed by his illness, preventing him from taking his medications, he says.
“I didn’t want my peers to look at me as someone that was a whacko,” Elgin says. “I said to myself, ‘I’m not sick.’”
His wife, Pamela, has been his main support for the past 10 years.
“To be that support system for him is very stressful,” she says. “This unseen elephant in the room is so consuming in my life.”
But Elgin said after hitting a crisis point he’s come to realize in the past couple of years the medications helps him be the man and father he wants to be.
He now lives by his psychiatrist’s instructions: “just swallow the pill.”
“It was a journey,” he says. He’s quick to smile and joke when the story allows.
The illness has no grip on him anymore. “If you’re not compliant, it’s a revolving door,” Elgin says of the mental-health system.
Elgin recently went back to school to become an advocate for the mental-health community.
“We’re still making plans,” Pamela says. “We’re still very optimistic.”
CANADA’S first mental-health strategy, released May 8 by the Mental Health Commission of Canada, recognizes the burden on families and the role they play in recovery from illness.
“To us, they are the experts,” says Irina Sytcheva, manager of policy and community relations for the Schizophrenia Society of Ontario. “They live it every day. They know what works, they know what doesn’t work.”
But when families do seek help, they are wholly unprepared for the task of monitoring and managing care, almost completely on their own.
“They’re told, you know, your job is basically to make sure your relative takes their meds and attends their appointments,” says Karyn Baker, executive director of the Family Outreach and Response Program in Toronto, one of the few support agencies for families of people with mental illness. “If you have somebody in the home who is adamant about not taking medication, it’s really complicated to know how to manage that situation without becoming sort of the enemy.”
Baker says treatment needs to be more of a conversation, which includes the person with the illness, family members and mental-health professionals where everyone’s expertise contributes to mental health.
“The journey to recovery is uncertain,” she says. “So for us, it’s really working with families to learn how to tolerate the uncertainty and to manage their own, what we call, dark emotions.”
GUILT, GRIEF and loss haunt families like the Skellys.
They put it simply: people have forgotten it takes a village to raise a child.
When seven police cruisers swarmed the Skelly’s home in broad daylight last year — it was the second time Kit was removed from the home in an agitated state — Lesley says she was floored that only one person in their tight-knit community called to make sure the family was OK.
“They’re all afraid,” Lesley says. “Everybody wants to help when it’s something they understand.”
Kit’s own family and friends were reluctant to visit him in hospital, Lesley says.
If Kit had had a heart attack or cancer, she’s sure the community would have rallied. “There would have been 20 casseroles at my door that night.”
She says there’s no use resorting to common condolences when speaking to someone who has a loved one with mental illness.
“You can’t tell them it’s going to be OK because you don’t know if it’s going to be OK,” she says.
After his most recent shot this May, Kit told his parents he no longer wants to take his medication, leaving them once again uncertain about the future of his treatment.
Kit needs a medicine that works — one that quiets all his demons and prevents him from losing interest in day-to-day activities. And he needs support from a community who can overcome their fear of mental illness and work with him on a plan towards recovery.
If he stops taking his medication again, Kit may be back on the street, suffering from untreated psychosis. It’s his choice to make.
But David and Lesley still hope that one day Kit will be able to come to terms with his illness.
“I think there’s a part of him that knows,” David says. “When he gets there, I know he’s going to be OK forever.”
Anatomy of an epidemic https://recoverynetworktoronto.wordpress.com/2011/03/05/anatomy-of-an-epidemic/
The epidemic of mental illness – why?
part 1 https://recoverynetworktoronto.wordpress.com/2011/06/13/the-epidemic-of-mental-illness-why/
part 2. https://recoverynetworktoronto.wordpress.com/2011/07/13/the-epidemic-of-mental-illness-why-part-2/
Anatatomy of an epidemic – videos
Changing the balance of psychosis treatment – Joanna Moncrief
The item on Kit mentions, “he needs support from a community who can overcome their fear of mental illness and work with him on a plan towards recovery.”
I thought: Imagine a voluntary team of neighbours, who had received training in support and dialogue, available to him. It does take a village – a real community… I think it’s time we became one.
Hi fearless…. I’m not sure that people need receive training – the main thing we need to do is listen -really listen ….but then again perhaps collectively we’ve forgotten how to do that….
Agreed. I think it’s possible that since we’ve forgotten how to do that, we need training. OR, maybe just ‘consciousness-raising’?
i think that in order to listen we nust want to…..“Listening is such a simple act. It requires us to be present, and that takes practice, but we don’t have to do anything else. We don’t have to advise, or coach, or sound wise. We just have to be willing to sit there and listen.”
― Margaret J. Wheatley
We may want to listen, but will we hear?
…. and what if we are not sure whether an impulse to hug is appropriate?