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Question: My doctor referred me to a clinic so I can be treated for my obsessive-compulsive disorder. I was upset to learn that the wait to see one of the specialists is about 12 months! Why is it so long?
Answer: Obsessive-compulsive disorder (OCD) has long been a hot topic in the media and lots of celebrities have been afflicted with the condition.
Several years ago, you may recall Howie Mandel, the Canadian-born comedian, actor and game-show host, went public with his own struggles with OCD and how it gave him an almost crippling fear of germs.
Possibly the most famous case of OCD involves Howard Hughes, the brilliant American engineer, industrialist and billionaire. His obsessive fear of germs eventually turned him into a recluse. And when actor Leonardo DiCaprio portrayed the troubled tycoon in the 2004 movie Aviator, he admitted to having a mild case of the disorder himself.
But despite its fairly high profile, OCD remains a misunderstood condition. Unfortunately, that lack of understanding often extends to the medical community as well.
“Most mental-health settings across the country have scant expertise in treating OCD and related conditions,” says Dr. Peggy Richter, a psychiatrist and director of the Clinic for OCD and Related Disorders at Sunnybrook Health Sciences Centre.
The lack of widespread expertise has contributed to very long waits at the handful of centres that do specialize in treating the condition.
In some respects, the shortage of proper treatment stems from the way OCD used to be categorized in the Diagnostic and Statistical Manual of Mental Disorders. The manual – often called psychiatry’s ‘bible’ – is widely used to classify and diagnose mental disorders.
In earlier editions, OCD was lumped in with other anxiety disorders.
Two years ago, the fifth edition – or DSM-5 – was released and OCD ended up in a new and more prominent spot.
It got its own chapter and was grouped together with several related conditions such as hoarding disorder, hair-pulling disorder (trichotillomania), skin-picking disorder, (excoriation) and an intense dislike of one’s own physical appearance called body-dysmorphic disorder.
“The key change was the recognition of the relationship between OCD and these other conditions,” says Dr. Richter. (As well, DSM-5 recognized hoarding and skin picking disorders to be distinct psychiatric conditions for the first time.)
They all share similar traits, but they manifest themselves in slightly different ways. They also need different treatment approaches than other anxiety disorders. ‘One size fits all’ doesn’t work.
“With this recognition there may be more help forthcoming,” says Dr. Richter who is also head of Sunnybrook’s Frederick W. Thompson Anxiety Disorders Centre.
It could, for instance, improve the focus of research into the underlying causes of OCD and the related disorders. What’s more, patients should now have a better chance of being accurately diagnosed. And with a correct diagnosis, patients should get more targeted and effective treatment plans than they would have received in the past.
Of course, these advances won’t happen overnight. In the meantime, patients like you will still have to wait an extended period to see a qualified specialist.
“It is incredibly upsetting and frustrating for patients and their families when they are told there is a one-year wait for access (to treatment),” Dr. Richter acknowledges.
OCD affects about 1 in every 40 people, or 2.5 percent of the population.
Those with the condition experience unwanted, obtrusive thoughts that keep popping into their heads. For instance, an OCD patient might get a headache but be unable to shake the thought that the pain is actually a sign of cancer, says Dr. Richter. Or, another individual with OCD may fear exposure to germs when touching doorknobs.
They often worry that their thoughts or actions will cause harm to others – especially those who they hold most dear. As an example, Dr. Richter says, they might be convinced that their failure to check a stove burner will lead to a fire endangering their entire family. In reaction, they may develop a series of repetitive behaviors as a means of dealing with the anxiety. So, they will check the stove, but once isn’t good enough. They check, and check, and check again – often in a very particular ritualized manner.
“I think most people can relate to these symptoms in some way. All of us will occasionally double-check to make sure a door is locked or worry about something obsessively,” explains Dr. Richter. However, it becomes a mental disorder when these thoughts and rituals hijack people’s lives and consume a huge part of every day.
“These disorders may be life-long,” says Dr. Richter. “That doesn’t mean we can’t help people with OCD or related disorders get better or manage their symptoms. But it does mean that it’s a problem that’s not likely to go away and never return.”
There are two main treatments — prescription medications and cognitive behavioural therapy or CBT for short, often used in combination.
For medications, a patient is typically started on a class of anti-depressants known as selective serotonin reuptake inhibitors, commonly known as SSRIs. They may also be prescribed anti-anxiety drugs.
The drugs, she points out, usually have only a limited effect on the disorder. However, they may be able to ease symptoms to the point that cognitive behavioural therapy becomes somewhat easier to do successfully.
CBT is essentially a form of psychotherapy aimed at modifying dysfunctional thinking and behavior. But therapists with training in CBT specifically for OCD and related disorders are not widely available in Canada.
“There are a lot of therapists who have the best of intentions, and they have CBT training – but they lack expertise in OCD,” she says. That means patients “are getting a generic form of CBT which unfortunately is not particularly effective in these conditions.”
Until more health-care providers get this training, patients can expect fairly long waits at the few clinics that do provide the treatment.
“In an ideal world, everyone would have access [to treatment] within months of referral and would be provided with specialized ongoing follow-up,” says Dr. Richter. “But that exceeds our capacity.”
Sunnybrook Hospital has launched a series of educational lectures on OCD to help bridge the treatment gap. Other mental health centres that specialize in OCD across Canada may be adopting a similar approach to help patients before treatment begins.
“One can learn to live with the disorder to the point that it is a minimal interference in one’s life,” provided the patient has access to the appropriate treatment, she says.
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Paul Taylor, Sunnybrook’s Patient Navigation Advisor, provides advice and answers questions from patients and their families. His blog, Personal Health Navigator, is reprinted on Healthy Debate with the kind permission of Sunnybrook Health Sciences Centre. Follow Paul on Twitter @epaultaylor.