Elizabeth passed away on February 1st 2013 after a long struggle with the plate she was handed at birth and the society she grew up in which had little or no idea of how to help, cope or give her support.
It is four years later, 2017. There has been some change, not enough but change is change and we must be thankful that the political will and the public attitude towards mental health is evolving. Justin Trudeau, our current Prime Minister, grew up with personal experience of how it is to have mental illness within his family. His mother, Margaret, suffered depression and and, since being in office, both Justin and Margaret Trudeau have made it their mission to change the face of mental illness. Justin Trudeau has put the focus on the way government and society responds to mental illness to bring into the public arena an understanding that mental health is an illness no different from Cancer or Diabetes, an illness, and just as much a crippling illness that one in five people face at some point in their lives. There is still a long way to go but while the end of the road is still not in sight, it is at least being traveled.
Articles and initiatives appearing below were written in the four years since Elizabeth passed.
Inside Maytree: The Sanctuary That Has Prevented More Than One Thousand Suicides. London, UK, 20/05/2016 – a place to go for those suicidal
‘I walked in hopeless and I walked out holding on to a little nugget of hope.’
Eight years ago Sarah* walked through the front doors of Maytree – the UK’s first “sanctuary for the suicidal”.
She spent four nights and five days talking through her darkest thoughts with the volunteers, at a time when she couldn’t see the point of living any more.
That short stay turned her life around.
After leaving the house she met the love of her life, moved to New York and got a new job. She has recently given birth to her first child.
Maytree director Natalie Howarth says, with tears in her eyes: “I think to go on to bring life into the world when a few years ago you were thinking of ending your own life is pretty powerful.”
From the outside, Maytree is just an ordinary house on an ordinary north London street. In fact, when I arrived I walked right past it. But as I hear Howarth recount more stories like Sarah’s, I soon learn the people in this unassuming building are doing extraordinary things.
Since it opened its doors to men and women on the brink of suicide 14 years ago, Maytree has welcomed more than 1,300 guests. Since then, as far as Howarth knows, only seven past visitors have gone on to take their own lives.
“While they’re here, guests are provided with the space to rest, reflect and talk freely about those difficult feelings and emotions that they’re sat with,” she explains as we’re sat in one of the house’s living rooms.
“We don’t advise people and we don’t try and ‘fix’ things, so people often ask me ‘well what the hell do you do?’
“We do what I think is quite difficult for one human being to give to another and that is to sit with an individual who really is in a dark place, not judge them, and to show empathy and care.”
The house has been a temporary home for people from all walks of life, including probation officers, teachers, doctors and the unemployed. Anyone having suicidal thoughts can contact the Maytree team by telephone or email and arrange to come in for an initial meeting. After that, they’ll be invited for a one-off stay of five days. There is no charge for guests.
“People always say ‘what does somebody who is suicidal look like?’ and I say ‘you, me, your neighbor, your friend.’ Suicide affects everybody,” Howarth says.
Howarth became director of Maytree in 2011 after years of working in the voluntary sector, but the concept was the brainchild of Paddy Bazeley and Michael Knight, who she describes as “two brave rebels” who previously worked with the Samaritans.
The pair recognised the need for something to fill the void between telephone helplines and hospital admission for people having suicidal thoughts, and when the Samaritans said they were unable to open a safe house, the pair decided to create one of their own.
Maytree is a far cry from a clinical hospital ward. Aside from the sense of peace and calm, there’s the familiar sound of a washing machine whirring away in the background. Fluffy towels sit on crisp white bedsheets in each of the four guest bedrooms and a small, yet tranquil garden is situated at the back of the house.
“We have alarm buttons in every room so if a guest is really struggling at night time, whether they’re having flashbacks, not being able to sleep or are feeling particularly vulnerable, they can just press the alarm button and one of the volunteers that’s on duty can just come down and check on how they’re doing,” Howarth explains.
“If need be, the volunteer will sit with them in the kitchen, make a cup of tea and stay up with them talking until two in the morning – or whatever time they feel safe enough to go back up to bed.”
All scissors, knives and cleaning products are locked away when members of staff aren’t using them and each of the windows is fitted with a lock so it can only open so high.
There’s also no TV, radio or internet allowed, to give the guests the chance to truly reflect without distraction. Entertainment mainly consists of good old fashioned board games and puzzles.
“It was a balance between creating a warm safe homely environment – the less clinical the better – but also having to reduce access to tools and things people could harm themselves with,” Howarth says.
The concept may sound simple but it’s clearly effective. Dr. Pooky Knightsmith stayed at Maytree in February 2016 and says she left the house with a renewed sense of hope. “I was terrified of going but I felt I had no other options,” she says. “I no longer felt confident about getting from one day to the next safely and I wanted to go somewhere where I could feel safe for a little while and give my family some respite.” Knightsmith says the break from daily life along with the “unconditional kindness” of staff helped her to see a different choice for herself.
“Nothing was expected of me so the guilt of not being the wife, mother, friend or employee that I felt I should be able to be was relieved for a few days,” she says.
“There were so many little things [that helped]. I could bore you for hours, but the key thing was that it wasn’t like I walked in ill and walked out fine.
“I walked in hopeless and I walked out holding on to a little nugget of hope and an understanding that, with a lot of hard work and by allowing myself to be supported, I could find a way forwards.”
One of the most remarkable things about Maytree is that it’s largely staffed by volunteers, who complete an in-depth six-week training course before interacting with the guests. Some have lost loved ones to suicide or previously stayed at the house as guests themselves.
“The fact that many of the volunteers had their own experiences of feeling suicidal and were now managing day to day was hugely inspiring,” Knightsmith says.“They weren’t perfect, airbrushed role models of amazing lives, they were normal honest people with slightly tedious jobs and houses that needed tidying and a boiler on the blink.
“Normal people who had wanted to die more than they wanted to live and now the balance had tipped. It made me believe that I could tip the balance too.”
The house currently has 103 volunteers who work alongside the nine paid staff, which may sound like a lot, but as Maytree runs 24 hours a day, 365 days a year, Howarth is always looking for more help.
While there’s no average day at Maytree, volunteers will split their day between completing household chores such as cooking and cleaning, answering phone calls and emails from potential guests and “befriending” current visitors.
Someone who has dedicated hours of time to helping at the house is Dave Bain, who started volunteering when he was training to become a psychotherapist. Five years on, he’s still here.
“To be able to watch somebody go through that change in just five days, it’s humbling and it’s quite a privilege,” he says.
“It can be difficult working here, but that’s the flip-side of it being so rewarding.”
Dave Bain insists that life in the house isn’t all doom and gloom. In fact, conversations with guests are often about something as superficial as the football.
“A lot of the people who come here have been really isolated. They’ve not seen anyone for sometimes for three to four to six months,” he explains.
“You’re just meeting someone at a very human level and acknowledging each other’s humanity, and I think that is something very powerful.”
For Bain and the other volunteers, looking after their own mental health is just as important as helping improve the mental wellbeing of volunteers.
They’ll regularly ask each other how they’re feeling and they work as a team so they can more easily recognize when someone needs a break.
“We’re working very much in the present moment here,” he explains.
“When I walk through that door my own life and everything else is outside and everything becomes very focused.
“And it’s really important that when you leave at the end of the day you’re not leaving carrying whatever it is that you’ve been listening to.”
It’s clear that volunteers like Bain are making a huge difference to people’s lives. Dotted around the house are pieces of art that past guests have created to say thank you and Howarth has a hoard of letters from grateful family members.
“One we received was from a little boy whose dad came and stayed. It was this little letter in crayon writing – he was only about five or six,” Howarth says.
“It just said: ‘Dear Maytree, thank you for making my Daddy well, he now plays with me’.”
Hearing such wonderful anecdotes throughout my visit is bittersweet – I can’t help but feel outraged that Maytree is the only house of its kind in the entire country.
As the house has become more and more well-known through its involvement with documentaries including ‘Professor Green: Suicide and Me’, the team has become inundated with phone calls from prospective guests.
And the demand for spaces is hardly likely to slow down any time soon. The latest figures show that suicide remains the biggest killer of men under 45 in Britain, with 2,997 men taking their own lives in 2015. Sadly, the amount of women taking their own lives in the UK is also steadily increasing, with 902 women dying from suicide in 2015, compared to 832 in 2014.
It’s blindingly obvious that we have a national need for more support around mental health services, yet there’s a serious lack of funding in the sector.
Mental illness accounts for 28% of the total burden of disease in the UK every year, but despite this, it gets just 13% of the NHS’s budget.
Maytree relies on funding from organizations such as the National Lottery and Comic Relief as well as public donations. Howarth hopes a second Maytree will be opening in South London within the next couple of years, but as the plan has fallen through due to lack of funding before, there are no guarantees.
Of course, one way to reduce the strain on Maytree would be to reduce the amount of people, particularly men, reaching a point where they become suicidal.
Howarth believes men’s reluctance to open up about mental health is one of the contributing factors to the worrying figures.
“It’s a sweeping statement, but men in general find it very difficult to talk about their feelings because they’re often more logic-based. They’re also less likely to reach out for support. Women are more likely to talk to their friends about how they’re feeling and go to their GP,” she says. “I think a lot of that is to do with upbringing and society – this expectation that men should have broad shoulders and be able to take anything on the chin.”
With mental health awareness campaigns such as Time To Change and Heads Together taking centre stage, Howarth is hopeful that the next generation of young men and women will be equipped will the skills to talk openly about their mental health, before they reach crisis point.
But, for now, it’s clear more work needs to be done to end stigma around mental health and break down the wall of silence that surrounds suicide.
“There are still people in society who see suicide as a very selfish act and there are people who see it as a sin – that it’s not your life and you have no right to take it,” Howarth says. “So if you imagine that you’re in a place where you’re feeling isolated and feeling suicidal, but your community are that judgmental about it, where the hell are you going to go? Who are you going to talk to?”
The staff and volunteers at Maytree can provide a safe haven for four people at any one time, for whom the experience can be life-changing.
Considering the sheer number of people who have walked into Maytree on the brink of suicide and walked out with hope for the future, the house is clearly a model that works.
With suicide statics increasing, it’s imperative that the powers that be, whether that’s the government, health services or local councils, follow Maytree’s lead in looking at alternative ways to improve mental health services.
The staff and volunteers at Maytree have been able to help a fortunate few, but they can’t help everyone.
You can learn more about Maytree on its website or contact staff via email on firstname.lastname@example.org or by phone on 020 7263 7070. Below are some links and telephone numbers you may also find useful:
WHY LONELINESS CAN BE AS UNHEALTHY AS SMOKING 15 CIGARETTES A DAY. ‘MAYBE IF IT WAS COOLER,’ MORE PEOPLE WOULD BE OPEN ABOUT FEELING ISOLATED, SAYS WOMAN WHO STRUGGLES WITH IT. CBC News , Aug 16, 2017
People don’t know how to talk about loneliness, says Quebec resident Marci O’Connor, who adds that it snuck up on her after she moved away from her family. (CBC )
Marci O’Connor, a mother of two teenagers, struggles with her confident, independent self and recurring loneliness — feelings that psychologists say are increasingly posing public health challenges.
O’Connor, 46, of Mont-Saint-Hilaire, 30 kilometers east of Montreal, said loneliness snuck up on her after she moved away from her family to a predominantly French-speaking area. She now works from home.
O’Connor lost the camaraderie of her community of stay-at-home moms as her children, now 15 and 17, grew and families’ circumstances changed.
“I found that I constantly check in with myself and my motives for doing things,” O’Connor said. “If I go hiking alone, is it to avoid other people or is that the day I really want to be on my own?”
Taken too far, a sense of independence and self-sufficiency can be a detriment. Psychologists say it’s important to recognize loneliness and prioritize the meaningful relationships we all need.
Demographics are another challenge. Earlier this month, Statistics Canada released new information from the 2016 census suggesting a record number of households, 28.2 per cent, have only one person living in them.
Grave toll of loneliness
In an upcoming issue of American Psychologist, Julianne Holt-Lunstad, a professor of psychology at Brigham Young University in Provo, Utah, says social connection should be a public health priority. Holt-Lunstad says social connection is associated with a 50 per cent reduced risk of early death, and loneliness exacts a grave toll.
“It’s comparable to the risk of smoking up to 15 cigarettes a day,” Holt-Lunstad said in an interview. “It exceeds the risk of alcohol consumption, it exceeds the risk of physical inactivity, obesity, and it exceeds the risk of air pollution.”
Holt-Lunstad thinks part of the reason loneliness and social isolation haven’t been in the spotlight is because it’s a nebulous term. Social scientists measure it in three ways that all significantly predict mortality risk:
- Structural — presence or absence of others.
- Functional — what relationships do.
- Quality — the positive or negative aspects of relationships.
While social isolation has to do with objectively lacking relationships, loneliness is about how you perceive your level of social support, psychologists say.
As the population ages, loneliness and social isolation are on the rise, said Dr. Nasreen Khatri, a clinical psychologist and gerontologist at the Rotman Institute at Baycrest Health Sciences in Toronto.
The mortality risk of a lack of social connection exceeds that of common public health priorities, said Julianne Holt-Lunstada, a professor of psychology at Brigham Young University in Provo, Utah. (Brigham Young University)
Physically, being around others alters our cortisol or stress hormone levels, Khatri said. Social connections are protective, helping us to maintain healthy eating routines, exercise and enjoy shared, pleasant activities to boost both physical and mental health while curbing negative behaviors like watching too much TV.
“If I could wave a wand, the one part of this problem I would make disappear is the idea that people who experience loneliness feel that they’re alone in that experience,” Khatri said. “They’re not.”
Khatri suggests that people:
- Recognize and name loneliness in their lives.
- Be aware of how our changing social structures enable it.
- Make socializing a priority.
- Plan socially for life changes, such as a move to a new city.
- Nurture real-life relationships.
One strategy O’Connor used was a bartering Facebook group. She helped a woman with a chronic illness to clean her home. The woman, who wasn’t physically able to scrub, cooked O’Connor home-cooked meals and offered one-on-one companionship.
O’Connor said that while going into someone’s house to help clean helped to get her out of her own head, talking about loneliness itself is still a challenge.
“I just think people don’t know how to talk about it,” O’Connor said. “Maybe if it was cooler. Maybe we need a celebrity endorsement for loneliness.”
For their part, researchers such as Holt-Lunstad recommend that physicians assess patients’ loneliness risk and make it part of their care plan.
The American Psychiatric Association says there is much that is physical about mental illness and much that is mental about physical illness. So the question is: Is it time to abandon the term “mental illness?”
According to Dr. Thomas Insel, Director of the U.S. National Institute of Mental Health, “rapidly evolving [brain] sciences are yielding new insights into the neural basis of normal and abnormal behaviour. Syndromes once considered exclusively as ‘mental’ are being reconsidered as ‘brain disorders.’”
He says the brain “continually rewires itself,” changing the way a person’s genetic make-up gets expressed, thus shifting “the language of mental disorders to brain disorders or ‘neural circuit disorders.’”Psychologists (who are not medical doctors and who usually use talk therapy) and psychiatrists (who are medical doctors and can therefore prescribe drugs) are not in different businesses.
Rather, they are in different wings of the same business, and what they bring to people who are suffering are different tools to fix a complicated problem with many facets.
One of the architects of this Quiet Revolution in brain science is the University of British Columbia’s Dr. Anthony Phillips, Scientific Director of the Institute of Neuroscience, Mental Health and Addiction, part of the Canadian Institutes for Health Research.
Dr. Phillips says big things are happening in neuroscience on a global scale. He likens these developments to a new kind of international free trade — one associated with brain health in a world economy that puts a premium on cerebral, not manual, skills.
Dr. Daniel Weinberger, Director and CEO of the Lieber Institute for Brain Development at Johns Hopkins University says, “We now have the first objective evidence of what mental illnesses actually represent at the molecular level.”
That said, the latest update of the manual used by psychiatrists to diagnose and treat mental disorders — the Diagnostic and Statistical Manual of Mental Disorders, 5th edition, or DSM-V — shows almost no influence of the remarkable advances in new technologies and knowledge of brain function.
“Research in mental health and the use of evidence-informed practices are insufficient or unco-ordinated,” Dr. Phillips says.
Dr. Thomas Insel, Director of the U.S. National Institute of Mental Health (NIMH), warns that alarm bells should be sounding.
“Psychiatric medications have been among the most widely prescribed of all drugs in medicine for the past decade,” Dr. Insel says.
“But continuing high disability and mortality from mental disorders demonstrates the urgent need for better treatment.”
”Prevention, Recovery, Cure“
The U.S. National Institute of Mental Health — the most influential mental health research-funding agency in the world — says its mission is to “transform the understanding and treatment of mental illness through basic and clinical research paving the way for prevention, recovery and cure.”
So we ask:
- The prevention of what? Disablement, premature death and erosion of life expectancy driven by brainbased mental disorders.
- Recovery from what? Brainbased mental disorders that afflict mostly younger people and adults in their prime years of work, income-earning and consumer-spending.
- Curing what? Brain-based mental disorders that result from our genetic make-up, our interactions with life and disruptions of brain circuits that are necessary for the everyday functioning of every person on this planet.
Canada’s Dr. Helen Mayberg, a famous innovator in brain science now working at Emory University in Atlanta, Ga., says it’s time psychiatry “actually treated what the person has.”
The use of bio-markers will improve diagnosis and treatment design. But the fact is this: Psychiatry continues to rely upon subjective symptoms and observable behaviors, not biological testing, and it is the only branch of medicine still doing so. The NIMH has taken steps to change that.
Framework for the future of mental health research under the leadership of Dr. Bruce Cuthbert, Acting Deputy Director of the NIMH, the institute has introduced a framework for the future of mental health research that has the potential to bring about fundamental change in how we perceive, understand, diagnose and treat those conditions we now call mental illnesses.
NIMH spends more than one billion dollars (US) a year in support of mental health research. Those funds will now be deployed for research projects not narrowly designed around the current classification (or labels) of psychiatric conditions (depression, bipolar disorder, etc.).
One of the most powerful and precise interventions to alter brain circuit activity (to relieve patients of a mental illness) may be targeted psychotherapy
The new NIMH framework incorporates neurobiology into what causes and what constitutes mental disorders, or what’s normal and what’s abnormal in the function of the human brain.
According to Dr. Cuthbert, through mental health research focused on neuro-biology, “new diagnostics will likely redefine mental disorders as brain circuit disorders and new treatments will focus on tuning these circuits.”
”Biology of mental disorders: Only drugs need apply?“
Dr. Thomas Insel, Director of the U.S. National Institute of Mental Health, says psychiatry is the only branch of medicine still restricted to clinical consensus and observable signs for diagnosing an illness. This must change.
One of the most persistent public misunderstandings is that using the biology of the brain to understand the nature of mental disorders automatically means prescription drugs are the preferred method of treatment. Not so.
In fact, talk therapies — just like drugs — have the capacity to influence and improve brain function and characteristics.
Much of the time, we need both tools — drugs and talk therapies.
Currently more than half the clinical trials funded by the NIMH focus on psychological care, or talk therapy. Trials for pharmaceutical medications to treat mental illness have slumped to 18 per cent.
Psychologists (who are not medical doctors and who usually use talk therapy) and psychiatrists (who are medical doctors and can therefore prescribe drugs) are not in different businesses.
Rather, they are in different wings of the same business, and what they bring to people who are suffering are different tools to fix a complicated problem with many facets.
New medications will be useful for this purpose, but not exclusively so.
“One of the most powerful and precise interventions to alter brain circuit activity (to relieve patients of a mental illness) may be targeted psychotherapy,” Dr. Cuthbert says.
The new NIMH research framework will, in time, lead to a new, biologically validated approach to diagnosing mental health problems — or brain circuit disorders, as we might come to know them.
Here is what we now know:
- Serious mental disorders increasingly appear to be “neurodevelopmental,” which means symptoms develop early in life and progress over time.
- Mental disorders are brain circuit disorders resulting from a wide variety of problems in the maturing of the human nervous system from conception forward.
- The social and physical environment in which people grow up and live constitute both risks to mental health and protection of it. This happens through life.
- Particular environmental stressors, such as early child abuse, may increase the risk for a whole variety of disorders.
Yes, a new sun is rising. And its light will illuminate the prospects of one day finding outright cures for the wide range of brain-based mental disorders now plaguing whole populations because — at long last — we will know what they are.
CTV’s W5. BRAIN DIFFERENCES IN ADOLESCENTS WITH BORDERLINE PERSONALITY DISORDER
Tom Kennedy, W5
Published Friday, October 23, 2015 1:12PM EDT
The contrast is striking. Katherine Duff gives off the attractive aura of an 18-year-old woman in good health and good humor. But when she begins to speak of what she has been dealing with since she was a child, a different image emerges. “Every single day seems like it’s going to be the end,” she told W5. “Every single thing that you do requires so much work that you always are wondering if it’s worth it, if you should just give up now.” When Katherine was 15, she did give up and tried to end her own life. She survived and then tried again at 16. Her parents had begun a desperate search to try to find out what was wrong with her, and to find a treatment that would help her. Eventually, they would learn she was suffering from a psychiatric condition called, Borderline Personality Disorder. Or BPD.
Katherine Duff sits down with CTV’s W5 to speak about her struggles with Borderline Personality Disorder.Larry Zeligson and his son Ben – when he was 9-years-old – are pictured in this family photo made available to CTV’s W5.
Ben Zeligson when he was 14-years-old is pictured in this photo made available to CTV’s W5. It is characterized by enormous mood swings, emotional outbursts, inexplicable anger and self-harm. And it is extremely dangerous.
Statistics show that up to ten percent of patients who’ve been hospitalized for BPD end their own lives. Neurological imaging studies suggest that people with BPD have an overactive Amygdala, the part of the brain where emotions are processed, and an under-active pre-frontal cortex, that regulates those emotions. Genetic and environmental factors may also play a role. It is believed that between 2 and 6 per cent of the general population is affected in different degrees. And according to one study, it affects just over three per cent of children over the age of 11. But a clear picture is difficult to establish because the symptoms are so varied, they can be mistaken for other conditions or simply be undiagnosed. And among adolescents, it can be dismissed as a phase of normal adolescent development.
Larry Zeligson is familiar with the problem. His son Ben began life as a happy and funny child with many friends. But when alone with his family, he also began displaying seemingly inexplicable emotional outbursts. “For example,” Larry said, “He’d get on his bike and he couldn’t keep his balance and it would fall over. Most kids would get up and get back on, or maybe cry a little bit. But he would explode and scream and shout and throw the bike on the ground.” When Ben was eight, things became far more serious when he began expressing thoughts of suicide. Larry reported it to doctors. “They would say, well you know it might be his age, he’ll outgrow it. It’s a little early to even put him in any kind of treatment. Let’s monitor it.” As Ben grew older, the outbursts continued and his father struggled to get an appointment for him to see a child psychiatrist. “The waiting lists themselves were at least nine months to a year,” Larry said.
Larry began researching on his own and read about Borderline Personality Disorder, and he concluded the symptoms were exactly what he was seeing from his son. He called one Canadian treatment centre, asking if he could get Ben admitted for BPD treatment. “They said to me, well how old is he? And I said he’s 14 going on 15. Right away they said, no, no, we only take 18 year olds. They don’t even diagnose them before they’re 18.” In a desperate email to one psychiatrist, Larry wrote, “There are days when I feel like I’m going to lose Ben if we have to wait until he turns 18 for treatment! What else can I do?” Ben never was officially diagnosed as suffering from BPD. And never would be. One evening, his father found him hanging in his bedroom. It was a week after his 15th birthday.
Dr. Blaise Aguirre is an American psychiatrist who specializes in BPD. He runs a residential treatment centre for adolescent girls at the McLean Hospital in Boston, Massachusetts. He said that BPD patients often are stigmatized as being difficult to treat and as a result, some psychiatrists may be reluctant to label adolescents with it. There sometimes is also wishful thinking that the symptoms may be just a temporary adolescent phase. But things, Dr. Aguirre said, are beginning to change. “We’re speaking about it more,” he said. “Increasingly, we get calls here at the hospital from clinicians who used to say for example, that they have a 16 year old who may be exhibiting some of symptoms of Borderline Personality Disorder. Now they’re saying they have a 16 year old who has BPD.”
In some ways, that is what happened to Katherine Duff. Her initial diagnosis was bipolar disorder. She was prescribed medication. But if anything, her condition deteriorated further leading to her first suicide attempt at 15. Clearly, something else was going on too. And then a psychiatrist at Hincks-Dellcrest in Toronto, a major centre of children’s mental health care, met with Katherine’s parents. “The psychiatrist had a book on borderline personality disorder,” Cameron Duff said. “I had not heard of it. And she said it is characterized by anger, profound loneliness, hopelessness. She went through a list of symptoms and I said, that is her. That is my daughter.” Unlike other families with troubled adolescents, the Duffs had a diagnosis. What they didn’t have was an effective treatment. And then began a desperate search. “We went into hyper-drive,” Katherine’s mother Doris told W5. “We saw possibilities when we read the stuff about the U.S. treatment facilities. But we saw no hope for treatment in Canada.” The family applied to the Ontario Health Insurance Plan, OHIP, asking for funding to send their daughter to Boston’s McLean Hospital. Eventually, their application would be rejected but while waiting, their crisis suddenly deepened. When Katherine was 16, she made a second and far more serious attempt to end her life, taking a massive overdose of medication prescribed for her bipolar disorder. “I’d just come home from volunteer work,” she said, “I went to my room. It was like, nothing is changing, my life is meaningless, I’m worthless, this is never going to end and I want the pain to stop.” Katherine was rushed to hospital. While recovering, her parents decided they could wait no longer. Her father said, “It was literally at that point, I just took one more kick at the government (OHIP) and said, listen, you have got to do something here and they said no. So I picked up the phone and called McLean in Boston and said, we’re coming.”
Katherine lived at the McLean Hospital for six weeks, receiving what is known as dialectical behavior therapy. It teaches people how to recognize emotions that are irrational and tries to provide ways to regulate them. BPD sufferers are taught to fill in cards every day, analyzing their emotions and what they did to bring them under control.
It sounds simplistic but Dr. Aguirre says it is effective. “Patients become effectively emotional as opposed to ineffectually emotional,” he said. “You’re going to recognize yourself for who you are but you will be much more effective in dealing with difficult situations.” The therapy is not a cure. Instead, it is sometimes referred to as a toolbox, giving BPD sufferers ways and means of living with their condition. The therapy is time-consuming and expensive. The final bill to the Duff family came to about $70,000.
The question facing governments in Canada is, can a publicly funded health care program afford to pay for this kind of treatment? Donna Duncan, the CEO of Hincks-Dellcrest, Toronto’s centre for children’s mental health, told W5, “You will find bits and pieces of BPD treatment. But you won’t actually find the comprehensive program in Canada.”
Right now, Hincks is working with health care professionals to develop a system that manages the symptoms of BPD in adolescents and offers support to their families. Duncan’s hope is that early intervention will mean effective treatment before things get out of control. “We hope to avoid the emergency visits, avoid families having to go to the US for treatment,” Ms. Duncan said. “And we have to stop kids trying to kill themselves. To have to hear a child come and tell you that they don’t want to live, no parent should ever have to hear that. Never.”
There are some signs that things may be changing. The Duff family appealed the decision of OHIP not to pay for their daughter’s treatment cost in the U.S. They won, the approximately $70,000 cost will be refunded. And BPD is being pushed into the public eye like never before, mostly by families who have had first hand experience with it. The Courey family for example. Sasha Courey was an elite Canadian athlete who swam for an American university. She first attempted suicide when she was 16 but it would be four years before she was diagnosed with BPD. Shortly after that, she ended her life. Her family believes that with an earlier diagnosis and treatment, Sasha would be alive today. They started what is called the Sashbear Foundation to raise public awareness. Every year, they hold a walk along the shores of Lake Ontario. Hundreds attend.
And there are young people like Katherine Duff willing to be public. Most people probably would find it difficult to sit in front of a television camera and be interviewed. Yet she agreed to speak to W5 about something as personal as her BPD, a condition she accepts may be part of her life forever.“The second time I tried to kill myself it was quite serious and I always look back and think why did I survive? And I can’t say, you know, that I’m happy or that I’m sad that I’m still alive. I feel indifferent still today. I’m hoping that will change. But again this (interview) is just a window into how difficult this learning to live with it really is.”