Falling through the cracks: BC Medical Journal
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IN THIS ISSUE: April 2019; 61:3
Cardiac auscultatory teaching and its Pages 101–148
role alongside echocardiography
The value of independent drug assessment
BC’s Tuberculosis Strategic Plan:
Refreshed and focused on TB
Falling through
the cracks:
How service gaps leave children
with neurodevelopmental disorders
and mental health difficulties
without the care they need
www.bcmj.org
2019 Winner 102 bc medical journal vol. 61 no. 3, april 2019 bcmj.org
bc medical journal vol. 61 no. 3, april 2019 bcmj.org 103
contents April 2019
Volume 61 • Number 3
Pages 101–148
106 Editorials
Langley City family practice, David R. Richardson, MD (106)
Reflections on my first year of independent practice, so far, Yvonne Sin,
MD (107)
109 President’s Comment
Are doctors territorial? When it comes to quality care, we better be
Eric Cadesky, MD
110 Letters to the Editor
Re: Cannabis use by adolescents, Ian Mitchell, MD (110)
Author replies, A.M. Ocana, MD (110)
O n t he co v e r MyoActivation for the treatment of pain & disability, Suzanne
There is a lack of specialized
Montemuro, MD (111)
mental health services for chil-
dren with a dual diagnosis, and To sleep or not to sleep, George Szasz, CM, MD (111)
the resulting inadequate level of
community support has placed
the burden of care on families.
Article begins on page 114.
Clinical Article
114 Falling through the cracks: How service gaps leave
children with neurodevelopmental disorders and
mental health difficulties without the care they need
Erika Ono, MSW, Robin Friedlander, MD, Tamara Salih, MD
The BCMJ is published by
Doctors of BC. The journal
provides peer-reviewed clinical
and review articles written 125 Premise
primarily by BC physicians, The value of independent drug assessment
for BC physicians, along with
James M. Wright, MD, Ken Bassett, MD, Thomas L. Perry, MD, Aaron M. Tejani,
debate on medicine and medical
politics in editorials, letters, and PharmD
essays; BC medical news; career
and CME listings; physician
profiles; and regular columns. 128 BCMD2B
Print: The BCMJ is distributed Modern-day cardiac auscultatory teaching and its role alongside
echocardiography
monthly, other than in January
and August.
Caleb A.N. Roda, BSKin
Web: Each issue is available at
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Subscribe to print: Email
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131 WorkSafeBC
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104 bc medical journal vol. 61 no. 3, april 2019 bcmj.org
contents
BC Medical Journal
Vancouver, Canada
604 638-2815 132 News
journal@doctorsofbc.ca Changes to the Editorial Board (132)
www.bcmj.org Read the quarterly GPSC newsletter online (132)
GPSC article update (132)
Compass program (132)
Editor Online sexually transmitted infection testing offers many benefits (133)
David R. Richardson, MD Tool to help with early detection of melanoma (133)
Editorial Board Pre- and postnatal nutrition program in Victoria (134)
Jeevyn Chahal, MD Protein “switch” could be key to controlling blood poisoning (134)
David B. Chapman, MBChB
Brian Day, MB
David Esler, MD
Amanda Ribeiro, MD 135 Council on Health Promotion
Yvonne Sin, MD
Canadian physicians support mandatory alcohol screening
Cynthia Verchere, MD
Roy Purssell, MD, Robert Solomon, LLB, Erika Chamberlain, PhD
Managing editor
Jay Draper
Associate editor 136 BC Centre for Disease Control
Joanne Jablkowski
British Columbia’s Tuberculosis Strategic Plan: Refreshed and focused
on TB elimination
Senior editorial and
production coordinator
Kashmira Suraliwalla Shaila Jiwa, RN, Victoria Cook, MD
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Proofreader 137 College Library
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bc medical journal vol. 61 no. 3, april 2019 bcmj.org 105
editorials
Langley City family practice
I
have spent over 25 years of my life working at Langley Hospital, where worried, because this environment
as a family physician in Langley I have fostered excellent relationships fostered closeness and sharing. There
and have seen many changes in with many physicians and staff. is always someone around to bounce
my community during this time. The Speaking of relationships, one ideas off and listen to concerns about
population has more than doubled, re- constant during all of this growth has this patient or that issue. Complaints
sulting in increased traffic congestion, been the welcome presence of the are shared, lightening the burden each
commercial areas, infrastructure, and physicians with whom I work closely of us carries throughout our busy
recreational facilities. Langley now in our clinic. I feel so lucky and have practices. We also regularly laugh and
has every big-box retailer known to been blessed to have shared these joke with one another. Fridays after
Western civilization, including Cost- years with these quality individuals. work are one of my weekly highlights
co, Walmart, Home Depot, and the Four became five, and now we are six. as we settle into the weekend by shar-
Real Canadian Superstore. What was When I first joined the original three, ing some drinks and snacks.
previously a quiet drive into the cen- I was surprised to find that our office We have seen each other through
tral core is now a stop-and-go traffic desks were in the same room without illnesses, accidents, tragedies, divorc-
light adventure. Despite this, Langley any physical barriers to separate them. es, aging parents, and so much more.
has been good to me. My two children I found this lack of privacy unnerving These people are my rocks and I know
were raised here and I have made many and was concerned about confidenti- they have my back through thick and
good friends over the years. I also met ality, interruptions, and noise levels. I thin. Now don’t get me wrong; we’ve
my wife here, twice.* I managed to wondered how work would get done had our disagreements over the years,
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sult of differences and disputes. I’m
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106 bc medical journal vol. 61 no. 3, april 2019 bcmj.org
editorials
Reflections on my first year of independent practice, so far
W
hen 1 July 2018 came genuine surprise, but some can come thought that if I passed the exam then
around, I had done the across as judgmental. One patient all the knowledge I needed for family
countless paperwork and even talked to me for a good 10 min- medicine would be there, and, miracu-
paid my dues. I finally got the okay to utes before he finally asked, “When lously, between 30 June and 1 July I
venture into the world of family medi- am I going to see the real doctor?” I would become the wise, all-knowing
cine on my own. It was, and still is, could only reply, “Sorry, Mr S., I am doctor I strived to be. But I woke up
an exciting time, but also a terrifying who you are seeing today.” on 1 July feeling like the same person
time. I spent the first few weekends of I was the day before.
this monumental year thinking about I am able to share quite a
There are still many things I do
all the cases I had seen the week prior not know, so I ask for help from col-
bit of knowledge and pearls
and second guessing myself about leagues, check resources, and consult
I have gained along the way,
some. I ended up calling several pa- specialists. I also look back and realize
tients to check on how they were despite only having been in how much more I do know compared
doing, and most of them were, first, practice for a short time. to only several months ago. I am more
surprised I called and, second, usually confident dealing with cases and mak-
doing better, and if not, there was a There will come a time when these ing decisions. I was hesitant at first to
plan of what to do next. This put my remarks no longer occur. I’m not sure teach medical students and residents
mind at ease somewhat. The unknown if I’m looking forward to that or not. because I thought I would not have
is still scary, but I know it is a part of Nonetheless, I remind myself that my much knowledge to share, but in re-
the growing pains and transition. I’m training has enabled me to help pa- ality, I am able to share quite a bit of
also happy to say that my weekends tients, so being the most professional knowledge and pearls I have gained
are generally getting better. and knowledgeable that I can be is the along the way, despite only having
Another thing I’ve noticed is the best response. In the meantime, I may been in practice for a short time.
many remarks on my age and expe- as well take them as a compliment. This period of transition is an ex-
rience. The remarks I most often get The one thing I did not truly come citing time. There are finally no resi-
are, “Oh, I thought I would be see- to understand fully until recently is that dency requirements to fulfill but we
ing someone . . . older,” or, “You look the learning never stops in medicine. in turn become fully accountable for
like you are in high school!” I have Yes, mentors and teachers told me that our patients. To my fellow colleagues
not yet come up with a good response they are constantly learning something who have also recently ventured into
to these remarks, so it usually ends new. But for some reason, when I was practice, let’s continue to learn and
with an awkward laugh and shrug. I in residency, the end goal seemed to be grow together. I look forward to what
think most of the remarks come from passing the CCFP. A small part of me lies ahead in our careers. —YS
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bc medical journal vol. 61 no. 3, april 2019 bcmj.org 107
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108 bc medical journal vol. 61 no. 3, april 2019 bcmj.org
president’s
comment
Are doctors territorial? When it comes to quality care, we better be
Being a doctor is chelation therapy, or consuming herbs our communities, we fiercely protect
no walk on the such as kava kava. (On a side note, against wasteful investigation, sha-
beach. Certainly although language is important and manistic treatments, and fear-pro-
it’s rewarding there are historical reasons for its use, voking propaganda. And if doing that
work and it’s we ought to find another term for al- makes us territorial, then let me be the
a privilege to ternative medicine, because the alter- first to draw a line in the sand.
serve others, but native to medicine is not medicine.) —Eric Cadesky, MDCM,
recent headlines We are also territorial in advo- CCFP, FCFP
suggest that we cating for our health care system,6 Doctors of BC President
have had sand thrown in our faces: or at least some improved form of it.
• The public is told that nurse practi- Through initiatives like the Guide- References
tioners can provide the same care as lines and Protocols Advisory Com- 1. Henning C. Nurse practitioners fill gaps as
family doctors.1 mittee,7 continuing education, and family doctor shortage grows. CBC News.
• Naturopaths are legitimized through many quality-focused organizations, Accessed 4 March 2019. www.cbc.ca/
funding to treat patients after a car we do not have space for those who news/canada/british-columbia/nurse
accident.2 promote unnecessary tests8 or incor- -practitioners-filling-gaps-family-doctor
• Some pharmacists want to give a di- rect or imaginary diagnoses.9 We rec- -shortage-1.4565750.
agnosis and then sell the treatment.3 ognize cultural humility10 but strive 2. ICBC. Focusing on care, not legal costs.
Given the expected pushback to balance that with science, even as Accessed 4 March 2019. www.icbc
from our profession, I was recently movements with malicious intent11 .com/about-icbc/changing-auto-insur
asked by a reporter why doctors are aim to erode our societal constructs of ance-BC/Pages/focus-on-care-not-legal
so territorial. My initial thought was, science and medicine. -costs.aspx.
who is more collaborative than doc- It is through this lens of advocat- 3. Ireland N. Pharmacies want to give $15
tors? We work (most importantly) ing for our patients that we can under- strep throat tests—but pediatricians say
with our patients and their families, stand recent actions. We are happy to they’re not accurate enough for kids. CBC
but also with pharmacists, kinesi- work with nurse practitioners and do News. Accessed 4 March 2019. www.
ologists, physio- and occupational so in many settings, but the skills— cbc.ca/news/health/canadian
therapists, social workers, speech and and, quite frankly, the value—of doc- -pharmacies-strep-throat-tests-second
language therapists, administrators, tors are unparalleled. Pharmacists are -opinion-1.4902431.
staff, and many other health care pro- our medication experts and an im- 4. GPSC. Team-based care. Accessed 4
fessionals. We are asking for support portant part of the health care team, March 2019. www.gpscbc.ca/our-im
to develop team-based care4 so we but the question of conflict of inter- pact/team-based-care.
can work together complementarily est12 diverges from the principle of 5. The College of Family Physicians of Can-
and practice to scope.5 patient-centredness. ada. Best advice: Team-based care in the
But I have further reflected on And although much online de- patient’s medical home. Accessed 4
this question. While we aren’t neces- bate eventually degrades to prove March 2019. https://bccfp.bc.ca/wp
sarily territorial over who provides Godwin’s Law, we as doctors cannot -content/uploads/2015/06/Team-based
care to our patients, happily sharing stand by while some naturopaths and -Care-in-PMH.pdf.
it with other health care professionals functional medicine doctors encour- 6. Nguyen N, Xu Y. Healthy Debate, Opin-
in team-based settings, we are protec- age people to pressure medical doc- ions. Why doctors must be advocates.
tive of our patients and of the health tors to order tests13 so that insurance Accessed 4 March 2019. https://
care system we work in. We are ardent will pay for it. healthydebate.ca/opinions/doctors
about giving the best care—one need We enjoy serving our patients -must-advocates.
only look at the many online forums and putting them first. We want bet- 7. Government of BC. Guidelines and Proto-
to see how passionately doctors advo- ter ways to collaborate in teams where cols Advisory Committee (GPAC). Ac-
cate to protect patients from unproven each health care professional works cessed 4 March 2019. www2.gov.bc
or unlikely investigations and treat- to their full scope. But when it comes .ca/gov/content/health/practitioner
ments such as magnetic field therapy, to the well-being of our patients and Continued on page 112
bc medical journal vol. 61 no. 3, april 2019 bcmj.org 109
letters
to the editor
We welcome original letters of less than 300 words; they may be edited for
clarity and length. Letters may be emailed to journal@doctorsofbc.ca,
submitted online at bcmj.org/submit-letter, or sent through the post and
must include your mailing address, telephone number, and email address.
All letter writers will be required to disclose any competing interests.
Re: Cannabis use are absolutely not saying that mari- Author replies
by adolescents juana killed that child.”3 I thank Dr Mitchell for his opinion and
This article [BCMJ 2019;61:14-19] As Dr Ocana notes, it can be dif- for standing behind the quote, “There
would be the first in the literature to ficult to deal with misinformation; are biochemically distinct strains
establish different clinical effects this is magnified when it is published of cannabis, but the sativa/indica
from C. sativa and C. indica strains. in a medical journal. The three most distinction as commonly applied in
While Dr Ocana insists that clinical commonly held misbeliefs among the lay literature is total nonsense and
research supports separating these physicians are that cannabis overdose an exercise in futility.”1
strains because of their different ef- can be fatal, that cannabis is often In effect, Dr Mitchell is saying
fects (stimulating vs sedating), the contaminated with fentanyl, and that “strain does not matter.” I can’t say
reference he provided does not sup- there are differences in effect between Dr Mitchell is wrong, but it does not
port this or even use these differing C. indica and C. sativa strains. align with the data we collected.
strain names. Recent chemical analy- —Ian Mitchell, MD, FRCP Dr Mitchell proposes that my ob-
sis of cannabis strains from Washing- Clinical Associate Professor, UBC servations should be viewed more as
ton State argues against differences in Department of results of the placebo effect in combi-
CBD and THC between these strains.1 Emergency Medicine nation with observer bias, especially
Other cannabis scientists are in agree- Site Scholar, Kamloops Family given the lack of quantification of the
ment that these terms are better suited Medicine Residency Program cannabis used.
to marketing than clinical use: “There I respectfully disagree. This is not
are biochemically distinct strains of References a placebo effect. The data are based on
Cannabis, but the sativa/indica dis- 1. Jikomes N, Zoorob M. The cannabinoid a retrospective chart analysis of a het-
tinction as commonly applied in the content of legal cannabis in Washington erogeneous population, in a naturalis-
lay literature is total nonsense and an State varies systematically across testing tic setting, with no exclusion criteria.
exercise in futility.”2 facilities and popular consumer products. Even after you remove the noise, our
In Dr Ocana’s article, results are Scientific Reports. Accessed 26 February observations remained statistically
presented from a cohort interviewed 2019. www.nature.com/articles/s41598 more likely than expected by chance.
about their experiences with different -018-22755-2. It seems that Dr Mitchell is sug-
strains; however, the results should 2. Piomelli D, Russo EB. The cannabis sativa gesting that our observations are mis-
be viewed more as those of the pla- versus cannabis indica debate: An inter- information, worse because they are
cebo effect in combination with ob- view with Ethan Russo, MD. Cannabis published in a peer-reviewed medical
server bias, especially given the lack Cannabinoid Res 2016;1:44-46. journal. Here’s why I see it differently:
of quantification of the cannabis used. 3. Silverman E. The truth behind the ‘first • Before our study, from reading the
Dr Ocana also states that deaths marijuana overdose death’ headlines. The medical literature, I didn’t even
have increased with cannabis legal- Washington Post. Accessed 26 February know there were two distinct strains.
ization. The cited reference mentions 2019. www.washingtonpost.com/news/ • During our study, I was amazed
only one death, that of a child who to-your-health/wp/2017/11/17/the-truth how strong the signal remained,
died of myocarditis. This case was -behind-the-first-marijuana-overdose despite a possible placebo ef-
controversial enough for the case re- -death/?utm_term=.5e8828886558. fect, observer bias, and regardless
port’s authors to publicly clarify, “We of the dose. Not only are the strains
110 bc medical journal vol. 61 no. 3, april 2019 bcmj.orgletters
different, they are opposites. needles with minute amounts of nor- To sleep or not to sleep
• After our study, I shared my obser- mal saline, soft tissue contractures are One thing that endears me to the
vations with every clinician at ev- released. BCMJ is the editor’s page. DRR
ery conference and everybody said I am now pain free and back to do- writes thoughtful, often funny com-
what Dr Mitchell said, “There is no ing all of the activities I love to do. ments about the world around us.
strain difference.” Here are some interesting details His December 2018 editorial, “Sleep,
In essence, what our patients that I picked up during my visits: when it no longer comes naturally,”
consider a self-evident truth, that sa- • A detailed history of all past injuries [BCMJ 2018;60:478] was a bit of
tiva stimulates and indica sedates, is is considered in terms of myofascial a departure from his usually joyful
based on millennia of trial and error. It contractures and scars. character, and reading it filled me
should not be a mystery to respected • A series of standardized movement with concern and empathy for him.
cannabis scientists. But it is. That’s tests is used to define painful areas. It revealed his struggle with antici-
why I knew we had to publish it. • The most painful sites are treated patory anxiety insomnia, wondering
Whether this is a random finding first, followed by re-evaluation of each night if sleep is going to come to
or whether it represents the first stone movements. Then the next painful him. The last line was: “…if anyone
on the scale that measures the weight area is treated. has suggestions for some good book
of evidence, only time will tell. • Multiple cycles of injections, fol- titles, please send them my way.”
—A.M. Ocana, MD, CCFP, ABAM lowed by evaluation and further in- I asked myself, what would be
North Vancouver jections, are carried out at each ap- a good book for someone awake
pointment. enough in the middle of the night to
Reference • Tissue realignment takes place the want to read, but anxious enough to
1. Piomelli D, Russo EB. The cannabis sativa first few days after treatment, fol- hope to get back to sleep?
versus cannabis indica debate: An inter- lowed by stabilization. I scanned my list of 117 BC
view with Ethan Russo, MD. Cannabis The technique was pioneered by physician authors on www.abcbook
Cannabinoid Res 2016;1:44-46. Dr Greg Siren,1 a family physician Continued on page 112
with a focused practice in chronic
MyoActivation for the pain in Victoria, BC.
treatment of pain & disability At the time I write this letter, myo-
Chronic musculoskeletal pain is com- Activation is also available in Van- Seeing my data has
mon in our society. One in five people couver at the CHANGEpain Clinic, given me confidence
suffer with chronic pain in Canada. the Downtown Community Health and a sense of pride.
We need alternatives to pharmaco- Centre (Downtown Eastside), and the
DR STEPHANIE AUNG
logic interventions that are cost ef- Complex Pain Service at BC Chil- Family Doctor, New Westminster
fective, safe, and available to most dren’s Hospital. It has been shown to
patients. Ideally, these alternatives be effective in treating chronic pain
would be covered by MSP. Most im- originating in the soft tissues in the
portantly, alternative treatments could elderly as well as children.
decrease our reliance on opiates. I hope this letter raises awareness
I am a retired family physician about this technique. It can be prac-
who underwent right hip replacement tically delivered in primary care pa-
surgery in 2018. I was skeptical when tient encounters and could be part of
a colleague suggested I try myoAc- a multidisciplinary approach to treat-
tivation during my rehabilitation. A ment of chronic musculoskeletal pain.
compensatory flexion and adduction —Suzanne Montemuro, MD, CCFP
contracture of my right hip was slow- Victoria
ing my recovery. I also had weak hip Join physicians across BC who
are using their EMR data for
abductors, hamstrings, and gluteus Reference
self-reflection. Learn more and
muscles. 1. Lauder G, West N, Siren G. MyoActiva- enrol at hdcbc.ca/enrol.
What is myoActivation? It is a re- tion: A structured process for chronic
fined injection technique that targets pain resolution. IntechOpen. Accessed 5
damaged fascia, scars, and other trig- March 2019. www.intechopen.com/on
ger points in the body. Using multiple line-first/myoactivation-a-structured-pro
needling with hollow bore cutting cess-for-chronic-pain-resolution.
bc medical journal vol. 61 no. 3, april 2019 bcmj.org 111letters comment
Continued from page 111 Trip across Canada:1862–1863 Continued from page 109
world.com, and looked for diaries, Duncan AC. Medicine, Madams, -professional-resources/msp/commit
novels, short stories, historical sto- and Mounties: Stories of a Yukon tees/guidelines-and-protocols-advisory
ries, poetry, and theatrical plays Doctor -committee-gpac.
published between the early 1800s Emmott K. How Do You Feel? 8. Carroll AE. The JAMA Forum. The high
and recent times. I looked for read- (1992 poetry collection) costs of unnecessary care. Accessed 4
ing material that was relatively slow Karlinsky H. The Evolution of March 2019. https://jamanetwork.com/
paced, interesting but not exciting or Inanimate Objects: The Life journals/jama/fullarticle/2662877.
anxiety provoking, and long enough and Collected Works of Thomas 9. Abassi L. American Council on Science
to get sleepy—or bored—while Darwin (1857–1879) and Health. Your adrenals are not fa-
reading it. Kenyon A. The Recorded History of tigued, you are. Accessed 4 March
Here are 10 books I recommend, the Liard Basin, 1790–1910 2019. www.acsh.org/news/2017/09/05/
written by some of our physician Lee E. Scalpels and Buggywhips your-adrenals-are-not-fatigued-you
colleagues, in alphabetical order by Leighton K. Oar and Sail: An -are-11782.
author: Odyssey of the West Coast 10. Doctors of BC. Supporting cultural safe-
Burris HL. Medical Saga: The Swan A. House Calls by Float ty for First Nations. Accessed 4 March
Burris Clinic and Early Pioneers Plane: Stories of a West Coast 2019. www.doctorsofbc.ca/news/sup
Cheadle WB. Cheadle’s Journal of Doctor porting-cultural-safety-first-nations.
Tolmie WF. The Journals of 11. Griffin A. The Independent. Anti-vaccine
William Fraser Tolmie: Physician myths are being promoted by social me-
Doctors and Fur Trader dia bots and Russian trolls, study finds.
Helping Dear Dr DRR, have a good read Accessed 4 March 2019. www.inde
and a good sleep! pendent.co.uk/life-style/gadgets-and
Doctors
—George Szasz, CM, MD -tech/news/anti-vaccine-vaxx-bots
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112 bc medical journal vol. 61 no. 3, april 2019 bcmj.orgEVERY DAY, THE CMA TAKES ACTION ON ISSUES LIKE PHYSICIAN WELLNESS, SENIORS CARE, EQUITY AND DIVERSITY. DRIVING BIG CHANGE IS WHAT WE DO. The Canadian Medical Association unites physicians across the country, helping to make a real difference on issues that matter to you. Thanks to your ideas, expertise and support, we’re leading positive change that’s strengthening the medical profession and driving better health for all Canadians. Be part of all we do. Join today at CMA.ca/join © 2019 Canadian Medical Association bc medical journal vol. 61 no. 3, april 2019 bcmj.org 113
Erika Ono, MSW, RSW, Robin Friedlander, MD, FRCPC, Tamara Salih, MD, FRCPC
Falling through the cracks:
How service gaps
leave children with
neurodevelopmental disorders
and mental health difficulties
without the care they need
Four clinical vignettes illustrate the challenges faced by families of
children with a dual diagnosis in British Columbia and demonstrate
the need for a wraparound approach to service delivery.
T
ABSTRACT: Children with neuro- the specifics of the diagnoses, chil- he Diagnostic and Statisti-
developmental disorders are at in- dren may be eligible for community cal Manual of Mental Disor-
creased risk of developing mental support services, outpatient mental ders (Fifth Edition) defines
health difficulties, and when neu- health services, and inpatient psy- neurodevelopmental disorders as “a
rodevelopmental and psychiatric chiatry services. However, because group of conditions with onset in the
disorders do co-occur, children and of system fragmentation and insuf- developmental period. The disorders
their families frequently face mul- ficient collaboration and commu- typically manifest early in develop-
tiple barriers as they try to access nication, obtaining these services ment, often before the child enters
services and resources. A literature can be challenging and many chil- grade school, and are characterized
review indicates that there is a lack dren are falling through the cracks. by developmental deficits that pro-
of specialized mental health servic- Four clinical vignettes illustrate how duce impairments of personal, social,
es for patients with a dual diagnosis, children and their families trying to academic, or occupational function-
and the resulting inadequate level of access support face barriers, includ-
community supports has placed the ing bureaucratic processes, lack of Ms Ono is a PhD candidate and sessional
burden of care on families. Services respite, out-of-home service obsta- lecturer in the School of Social Work at the
for children in BC with a dual diagno- cles, and limited specialized training University of British Columbia, an evalua-
sis are delivered by different agen- for care providers. Policy changes tion specialist at the Centre for Health Eval-
cies and programs, primarily under are needed to ensure a wraparound uation and Outcome Sciences, and a social
the Ministry of Children and Fam- approach to care based on integra- worker at BC Children’s Hospital Psychiatry
ily Development and the province’s tive interagency and cross-agency Department. Dr Friedlander is clinical head
health authorities. Depending on practices. of the Neuropsychiatry Clinic at BC Chil-
dren’s Hospital. He is also a clinical profes-
sor in the UBC Department of Psychiatry
and director of the Developmental Disor-
ders Program. Dr Salih is a psychiatrist in
the Mood and Anxiety Disorders Clinic and
the Neuropsychiatry Clinic at BC Children’s
Hospital. She is also a clinical instructor in
This article has been peer reviewed. the UBC Department of Psychiatry.
114 bc medical journal vol. 61 no. 3, april 2019 bcmj.orgFalling through the cracks: How service gaps leave children with
neurodevelopmental disorders and mental health difficulties without the care they need
ing. There is a wide range of de- disabilities in the community. In this In addition to making access to
velopmental deficits that vary from process specialized psychiatric care specialized mental health services
very specific limitations of learning diminished.4 Individuals with a co- difficult, the inadequate level of com-
or control of executive functions to occurring neurodevelopmental dis- munity supports in general has placed
global impairments of social skills or order and mental health difficulties the burden of care on families. “Car-
intelligence.”1 Major neurodevelop- could only access generic mental ing for a child with a disability can be
mental disorders include intellectual health services in a system not set up a demanding experience, taxing both
disability (ID), autism spectrum dis- for easy access to these services. The the physical and emotional capacities
order (ASD), fetal alcohol spectrum “generic [mental] health care model, of the caregiver, as well as the material
disorder (FASD), and genetic condi- combined with no national guidelines resources of the family.”8 Challenges
tions such as Prader-Willi, fragile X, and provincially determined services include increased caregiver physical
and Down syndrome. Children with shared by two distinct ministries has and psychological stress, family dis-
neurodevelopmental disorders are at translated into poorly coordinated tress, reduced marital satisfaction,
increased risk of developing mental care for individuals with intellectual and inadequate social supports for
health difficulties, with 39% of chil- disabilities and mental health needs parents of these children.9 Research
dren with a neurodevelopmental dis- in Canada.”5 These systemic issues indicates the need for adequate re-
order requiring mental health services have “led to misdiagnoses, inappro- spite (“short-break residential servic-
compared with 14% of children in the priate treatments and over-reliance on es”); availability of additional respite
general population.2 psycho-pharmacological interven- services in emergencies; accessible
Children with a dual diagnosis tions.”6 As Ouelette-Kuntz states, out-of-home placements; flexibil-
and their families frequently face “Individuals with mental health prob- ity in eligibility and service delivery;
multiple barriers when trying to ac- lems and ID experience ‘double stig- shorter waiting lists; psychoeduca-
cess support services. Service de- ma’. . . . Persons with ID and mental tional support groups for parents;
livery in BC is fragmented, with health issues are often considered peer mentoring; on-site health clinics
the health authorities and different inappropriate for traditional ID com- for caregiver accessibility, cultural
agencies, programs, and contractors munity integrated services because sensitivity; and streamlining, coordi-
providing various kinds of care and of their psychiatric difficulties but nation, and centralization of servic-
funding, primarily through the Min- are also considered inappropriate for es.10-12 Furthermore, as Goddard and
istry of Children and Family Devel- usual mental health services because colleagues note in their study of sto-
opment (MCFD). Service gaps have of their low IQ. Adding to this stigma ries collected from parents, “Perhaps
resulted from this model, similar to is the lack of knowledge of mental the most persistently troubling system
those seen across Canada (oral com- health professionals with regard to for these parents was that of the bu-
munication from V. Dua, psychia- this population because of deficien- reaucracy. . . . Parents expressed their
trist-in-chief, Surrey Place [Toronto, cies in training and the existing barri- frustrations about how they have re-
Ontario], 7 July 2017). ers to practice in this area.”6 ceived the bureaucratic ‘runaround,’
The attempt to integrate individu- especially from the social welfare
Literature review als with neurodevelopmental disor- system. . . . They described a system
In BC before the 1990s, children ders into their communities has led that compartmentalized, that regular-
with neurodevelopmental disorders to them being “segregated once again ized, and that fostered fear, confusion,
received services through three insti- by a failure to address their special- and frustration.”13
tutions: Woodlands, Tranquille, and ized medical needs.”6 Social margin-
Glendale. In 1981 the BC government alization cannot be addressed solely Current services
announced plans to close all three in- by a shift to community care. The Services for children in BC with a
stitutions. This plan was implemented “work of deinstitutionalization does dual diagnosis are delivered by differ-
over the next 15 years, with Wood- not stop at transferring participants ent agencies and programs. Children
lands3 officially closing in 1996. into the community. . . unless relo- may be eligible for a variety of com-
Following deinstitutionalization, cation brings with it a fundamental munity support services, outpatient
services became de-medicalized and change in the [quality of life] of par- mental health services, and inpatient
more importance was placed on inte- ticipants, it creates only an illusion of psychiatry services, depending on the
grating individuals with intellectual deinstitutionalization.”7 specifics of their diagnoses.
bc medical journal vol. 61 no. 3, april 2019 bcmj.org 115Falling through the cracks: How service gaps leave children with
neurodevelopmental disorders and mental health difficulties without the care they need
Assessment services for outpatient medical psychology de- is private fee-for-service psychology
neurodevelopmental disorders partment. Some psychological assess- clinics. Assessments for genetic con-
Regional health authorities in part- ments are also conducted in child and ditions are undertaken by hospital-
nership with Provincial Health Ser- adolescent inpatient psychiatry units based services, including pediatrics,
vices provide multidisciplinary across the province, and a smaller medical genetics, metabolic diseases,
assessments for autism spectrum number in the BC Children’s Hospi- and neurology.
disorder and fetal alcohol spectrum tal outpatient psychiatry clinics. As-
disorder through the BC Autism As- sessment for intellectual disability is Community support services
sessment Network (BCAAN) and done mainly through psychoeduca- The Ministry of Children and Family
the Complex Developmental Be- tional assessments at schools; how- Development provides commun-
havioural Conditions (CDBC) pro- ever, these resources are limited and ity support services for a range of
gram ( Figure 1 ). In addition, a small many children with intellectual dis- neurodevelopmental and psychiatric
number of children are assessed at ability are not assessed during child- disorders ( Figure 2 ).
BC Children’s Hospital through the hood. The other option for assessment
Autism spectrum disorder Fetal alcohol spectrum Intellectual disability (ID) Genetic conditions
(ASD) disorder (FASD) Psychoeducational Hospital-based assessment
BC Autism Assessment Complex Developmental assessment at school or through pediatrics, medical
Network (BCAAN) or private Behavioural Conditions private psychology clinic or genetics, metabolic
psychology clinic (CDBC) Network as part of ASD or FASD diseases, or neurology
assessment services
Figure 1. Assessment services for neurodevelopmental disorders.
Ministry of Children and Family
Development (MCFD)
Key Worker and Parent
Children and Youth with Special Needs (CYSN) division
Support Program
For children with a variety of needs, including autism
For children with fetal alcohol
spectrum disorder (ASD) and intellectual disability (ID)
spectrum disorder (FASD)
Autism Funding ASD or ID services At Home Program
program Respite resources, behavioral Medical and/or respite resources
Behavioral consultant services, child and for children dependent in at least
intervention youth care worker services three of four functional activities of
resources (depending on need and availability daily living (eating, dressing,
of resources in community) toileting, washing)
Figure 2. Community support services.
116 bc medical journal vol. 61 no. 3, april 2019 bcmj.orgFalling through the cracks: How service gaps leave children with
neurodevelopmental disorders and mental health difficulties without the care they need
Children and Youth with Special Funding program, which provides understand fetal alcohol spectrum
Needs (CYSN). Most of the servi- support for intervention services: disorder by providing education and
ces for children with autism spectrum $22 000 annually for children under information specific to the needs of
disorder and intellectual disability are age 6 (early intervention) and $6000 the child and family. They also help
delivered through the Children and annually for children age 6 to 18. families access support, health, and
Youth with Special Needs division of education services for the child. Local
MCFD.14 Services are often delivered At Home Program. The At Home parent support agencies provide par-
by contracted agencies or individual Program provides medical and/or ent and grandparent FASD training
care providers. Families receive sup- respite benefits to assist parents with and parent mentoring sessions, and
port services for children with autism the costs of caring for a child with sponsor parent support groups.
spectrum disorder and/or intellectual severe disabilities at home. To be eli-
disabilities, which can include direct- gible for the program, children must Outpatient mental health
funded respite, contracted respite, be dependent in at least three of four services
respite relief, homemaker/home sup- functional activities of daily living Outpatient services are provided pri-
port, behavioral support, child and (eating, dressing, toileting, washing), marily by divisions of the Ministry of
youth care worker support, and parent have a palliative condition, or meet Children and Family Development
support. The availability of services the requirements for direct nursing and the province’s health authorities
is dependent on which programs are care provided by provincial Nursing ( Figure 3 ). In addition, some services
running through contracted agencies, Support Services. are provided by private practitioners
which varies from one location to such as psychologists and counselors.
another. Children with ASD receive Key Worker and Parent Support
additional services under the Autism Program. Key workers help families
Examples of challenges addressed: Private practitioners
anxiety, depression, attention deficit hyperactivity disorder, Psychologists, counselors,
aggression, self-injurious behavior, unsafe behavior psychiatrists, pediatricians,
clinical social workers
Ministry of Children and Family
Health authorities
Development (MCFD)
Children and Family support Child and Youth Developmental Provincial Fraser Health Island Health
Youth with and child pro Mental Health Disabilities Health Services Child and Youth Anscomb
Special Needs tection services (CYMH) Mental Health Neuro Neuro Program Neuro
(CYSN) Emergency Mental health Services psychiatry psychiatry development
Additional respite if the services Services Clinic at BC Clinic at Surrey Team at Queen
respite, child/youth is not specific to Children’s Memorial Alexandra
overnight eligible through children with Hospital Hospital Centre for
respite CYSN and there intellectual Children’s
are safety disabilities Health
concerns
Figure 3. Outpatient services for patients with mental health and/or behavioral challenges.
bc medical journal vol. 61 no. 3, april 2019 bcmj.org 117Falling through the cracks: How service gaps leave children with
neurodevelopmental disorders and mental health difficulties without the care they need
Child and Youth Mental Health Developmental Disabilities Men Centre for Children’s Health (Island
(CYMH). Child and Youth Mental tal Health Services. Developmental Health). The neuropsychiatry and
Health delivers psychiatric services to Disabilities Mental Health Services neurodevelopment teams working at
children up to age 18. However, this is operated by regional health author- these centres provide assessments and
service does not provide specialized ities to provide specialized mental limited treatment.
care for children with a dual diagno- health care for youth with co-occur-
sis. If children with neurodevelop- ring intellectual disability and mental Inpatient psychiatry and
mental disorders are assessed as “too health or behavioral challenges. This residential services
severe” or “low functioning,” they are unique program offers psychiatric Inpatient psychiatry and residential
often denied mental health services, assessments and treatment, clinical services are provided by the Ministry
regardless of mental health concerns counseling, music and art therapy, of Child and Family Development,
or diagnosed psychiatric comorbid- and case management. Eligibility health authorities, and Community
ities. Since 2014 the referral process requirements include a diagnosis of Living BC (CLBC) ( Figure 4 ). Two
for Child and Youth Mental Health intellectual disability accompanied child inpatient/day programs and sev-
has changed to primarily self-refer- by severe mental health difficulties. eral adolescent inpatient psychiatry
rals. Unfortunately, this has created Services are available to individuals units operate across the province.
obstacles for many families who are in starting at age 12 in the Lower Main- However, there are no specialized in-
crisis and find applying for services to land and Vancouver Island and age 14 patient psychiatry units for children
be challenging. Moreover, most Child in the rest of the province. and youth with a dual diagnosis.
and Youth Mental Health offices of-
fer drop-in intake sessions for only Health authority neuropsychiatry Residential group homes. When
a few hours 1 day a week. This can services. Outpatient child and youth families are struggling to care for
create additional barriers for parents neuropsychiatry services are pro- their children, placement in a group
of children with neurodevelopmental vided at clinics in three tertiary care home may be required. To obtain
disorders, families with English as a centres: BC Children’s Hospital residential care, parents must apply to
second language, working parents, (Provincial Health Services Author- the Ministry of Children and Family
single parents, and families without ity), Surrey Memorial Hospital (Fra- Development. They must then sign a
transportation. ser Health), and the Queen Alexandra Special Needs Agreement or a Volun-
Ministry of Children and Family Community Living BC
Health authorities
Development (MCFD) (CLBC)
Residential group homes Complex care program Child or adolescent Inpatient assessment
Provided by contracted Provided at Maples inpatient psychiatry units facility
agencies organized through Adolescent Treatment Centre Hospital-based services Provincial Assessment
Children and Youth with for individuals age 7 to 18 with such as the Child and Centre (PAC) for individuals
Special Needs or child health, developmental, and/or Adolescent Psychiatric age 14 and older with
protection services under a behavioral needs that affect Emergency (CAPE) unit at intellectual disabilities and
Voluntary Care Agreement or their ability to function in the BC Children’s Hospital mental health or behavioral
Special Needs Agreement routine of daily life challenges
Figure 4. Inpatient psychiatry and residential services.
118 bc medical journal vol. 61 no. 3, april 2019 bcmj.orgFalling through the cracks: How service gaps leave children with
neurodevelopmental disorders and mental health difficulties without the care they need
tary Care Agreement, which places Alex tion program. The psychiatrist has
the child in the care of the ministry. Alex is a 13-year-old male with fetal also recommended respite care and
Families have no options for long- alcohol spectrum disorder, attention counseling for Alex’s mother.
term out-of-home care that does not deficit hyperactivity disorder, post-
require going through Children and traumatic stress disorder, and a specif- Gaps in services. Multiple obstacles
Youth with Special Needs or child ic learning disorder in reading and have made it difficult to move for-
protection services and giving up care written expression. Alex lives with ward with the psychiatrist’s recom-
of their child. Group homes typically his adoptive mother, who is a single mendations. Because Alex has an
do not have mental health staff.
Complex care program. The Maples
Adolescent Treatment Centre of-
fers residential care for children with
mental health concerns and troubling
behavior. A complex care program for
There are two distinct patient populations:
children age 7 to 18 includes individ- in one the children have few comorbidities
ual treatment and service plans.
and need limited specialized intervention
Provincial Assessment Centre and support, while in the other the children
(PAC). The Provincial Assess-
ment Centre is a designated tertiary
have significant mental health comorbidities
psychiatric service under the Men- and sometimes extremely challenging
tal Health Act, mandated to provide
multidisciplinary assessment and
behaviors that require intervention for
treatment for individuals age 14 and which funding is not readily available.
older with an intellectual disability
and concurrent mental health and/or
behavioral challenges. PAC is part
of Community Living BC, the prov-
incial Crown corporation that funds
and supports services to adults with parent and has her own mental health IQ of 84 he is not eligible for servi-
developmental disabilities, autism struggles. She currently receives in- ces through Children and Youth with
spectrum disorder, and fetal alcohol come assistance as a person with dis- Special Needs, which requires an IQ
spectrum disorder. abilities. Over time, the behavioral of 70 or less when defining intellec-
difficulties stemming from Alex’s tual disability. Had he met this eligi-
Clinical vignettes multiple diagnoses (temper outbursts, bility requirement, the family could
The following clinical vignettes are aggression toward his mother and have benefited from respite care and
fictionalized amalgamations of pa- peers, stealing) have led to caregiver the services of a child and youth care
tient symptoms and systemic barriers burnout. worker and a behavioral consultant.
commonly seen at tertiary outpatient Alex is also not eligible for care under
neuropsychiatry clinics in British Services accessed and recom Developmental Disabilities Mental
Columbia. The vignettes do not rep- mended. The family has access to a Health Services because he does not
resent actual patients. They have been community key worker and a psych- meet that agency’s requirements for
included to illustrate the recurring iatrist at a tertiary outpatient neuro- intellectual disability either. Alex’s
issues and gaps in services that chil- psychiatry clinic. The psychiatrist has mother, supported by the neuropsych-
dren with a dual diagnosis and their recommended Alex receive ongoing iatry clinic, had previously called the
families experience. treatment in the community to mon- Ministry of Children and Family De-
itor his medications and see a therapist velopment and asked to be considered
for emotional regulation and a behav- for respite and other support services.
ioral consultant to design an interven- She was told that because there were
bc medical journal vol. 61 no. 3, april 2019 bcmj.org 119Falling through the cracks: How service gaps leave children with
neurodevelopmental disorders and mental health difficulties without the care they need
“no child protection concerns” the iatrist at a tertiary outpatient neuro- neuropsychiatry clinic and receives
ministry would not open a file, even psychiatry clinic for consultation and benefits through the Autism Funding
though the MCFD does open files short-term treatment. The psychiatrist program. Previously, community-
for family support services as well has recommended that Leo receive based consultants who were not ex-
as child protection services. She then support from a behavioral consultant perts in self-injurious behavior were
used the self-referral intake process and behavioral interventionist and be contracted by Children and Youth
for Child and Youth Mental Health started on medication and monitored with Special Needs to provide in-
to access required mental health ser- in the community. home behavioral consultation and
vices for ongoing therapy and medi- intervention. These interventions did
cation management for Alex and was Gaps in services. Because Leo does not change Emily’s behaviors. For
refused services. The reason given not have a diagnosis for autism spec- the past 2 years Emily’s psychiatrist
was Alex’s diagnosis of fetal alcohol trum disorder he is not eligible for has been strongly recommending she
spectrum disorder. Because of this the Autism Funding program, which see a behavioral consultant skilled
diagnosis, Alex’s co-occurring men- would cover the cost of a behavioral in managing self-injurious behavior
tal health conditions were discounted. interventionist to implement a treat- and be considered for placement in
ment plan developed by a behavioral a residential facility specializing in
Leo consultant. Leo cannot be referred to challenging behaviors. As the behav-
Leo is an 11-year-old male with Pra- Child and Youth Mental Health to ad- iors continue and worsen, the mental
der-Willi syndrome, a rare genetic dress his mental health concerns be- health of Emily’s parents is precipi-
disorder affecting chromosome 15. cause his clinical needs require more tously declining and their marriage is
Individuals with this diagnosis com- than the services of a general mental under heavy strain. One parent is un-
monly have insatiable appetite, de- health clinician, and he cannot ac- able to continue working because of
velopmental and cognitive delays, cess a psychiatrist through Child and the constant care Emily requires.
hypogonadism, and behavioral and Youth Mental Health without seeing
psychiatric difficulties. Leo has an IQ a clinician first. In addition, he is un- Gaps in services. Lack of communi-
of 67, placing him in the mild intellec- able to access a psychiatrist through cation from Children and Youth with
tual disability range. Leo engages in Developmental Disabilities Mental Special Needs initially delayed secur-
chronic skin-picking and self-harm, Health Services because he is young- ing appropriate supports for Emily.
typical of the behavioral phenotype er than 12, and a private child psych- While her family now receives bene-
associated with Prader-Willi syn- iatrist will not accept the referral. fits through the Autism Funding pro-
drome. He also inserts objects into gram, the $6000 per year provided
his rectum and smears feces over his Emily does not cover the interventions she
body, stabs his wounds with sharp Emily is a 9-year-old female with needs. Also, despite the very obvious
objects, and fills them with dirt. His autism spectrum disorder, moderate challenges Emily’s parents face, they
parents have often had to stay up all intellectual disability, separation anx- have had to continuously and tire-
night to prevent him from worsening iety disorder, and Tourette syndrome. lessly assert their needs and advocate
the multiple self-inflicted wounds on Emily must wear a helmet, gloves, for their child. An additional issue
his body. Leo exhibits impulsive be- and knee pads because of her severe for this family has been the require-
haviors and is a flight risk. Leo’s par- self-injurious behavior. Her parents ment to sign a Special Needs Agree-
ents are overwhelmed by managing have had to stand by helplessly while ment for residential treatment, which
the difficult behaviors associated with Emily bruises and batters her head involves relinquishing care of their
his neurodevelopmental disorder and and face. Despite multiple trials of child to CYSN. This is a difficult step
co-occurring psychiatric problems. medication by several psychiatrists for the family to take, but is the only
and community-based behavioral way to access a specialized residential
Services accessed and recom interventions, Emily’s self-injurious program.
mended. The family has access to behavior is worsening.
Children and Youth with Special Harpreet
Needs services because Leo’s IQ is Services accessed and recom Harpreet is a 14-year-old female with
less than 70. Leo has an education mended. Emily is under the care of moderate intellectual disability. Her
assistant at school and sees a psych- a psychiatrist at a tertiary outpatient comorbidities include epilepsy, anx-
120 bc medical journal vol. 61 no. 3, april 2019 bcmj.orgYou can also read
