Failure of Care: Perinatal Psychiatry in Victoria, BC

As I mentioned in a previous post, I went to see a perinatal psychiatrist for a consultation in Victoria, BC, three years ago, to ensure that the psychotropic drug that I was on at the time, lithium carbonate, was safe for pregnancy (long story short, she told me that there is a small cardiac risk to the fetus, but this risk has been overstated in past literature and it is more risky for the mother to be taken off lithium carbonate and then to suffer from a manic or mixed episode or depression).

In psychiatry, as in other branches of medicine, there are various branches and levels of specialty. While a GP might treat depression or anxiety or even bipolar disorder, many patients with psychiatric disorders will either have a consult with a psychiatrist or be treated by one regularly. This ensures that the patient has someone monitoring their condition and the medications that they are on, their blood serum levels of certain medications, and checking to see if there are any negative things happening to the kidney and liver, etc. from the medications.

If the patient gets pregnant, they are shifted from their psychiatrist (if they have one) to a perinatal psychiatrist, because most psychiatrists are uncomfortable treating a woman while pregnant, so a new layer of specialist is required for the duration of the pregnancy and often for a year or two postpartum (a fragile time when things like postpartum depression can occur and while the woman might be breast feeding and calls need to be made over whether or not she can on certain medications). Unfortunately, in most areas of Canada, specialists are in short supply and "special" specialists are in even shorter supply, leading to long wait times and difficulties for a patient to get an appointment or consult with a "special" specialist like a perinatal psychiatrist.

In early May of this year, my psychiatrist told me that he would not treat me while I was undergoing IVF. He said that he lacked familiarity with the hormones used in the process and their potential impact on my bipolar disorder/anxiety disorder to feel comfortable treating me. He said that I would have to be treated by a perinatal psychiatrist. I asked him to refer me to one (in Victoria the office is out at Victoria General Hospital and has a couple of perinatal psychiatrists). His office told me that he would not refer me when I called, so I went to my GP and asked him to refer me. My GP gladly did this (it turned out that my psychiatrist also sent a referral letter and that his office had somehow failed to communicate this to me).

Then I waited. I started to get concerned and called the perinatal psychiatry office. I was told that there were no appointments available until late summer at the earliest (I was calling in early May). They booked me an appointment in the late summer.

Then I got pregnant before my first cycle of IVF was set to commence. I called up the perinatal psychiatry office right away (as instructed by my psychiatrist and the Victoria Fertility Clinic) and asked if there was any way that I could get in earlier to see the perinatal psychiatrist who I had been referred to, since I was pregnant and my dose of lithium would have to be adjusted with my growing weight and blood volume (I did not want to deregulate, have an episode, and put the baby at risk or worse yet, be on a level of lithium carbonate that would be toxic to the growing baby). The perinatal psychiatrist's office  told me the perinatal psychiatrist was absolutely swamped. I asked what I was supposed to do if I my psychiatrist couldn't or wouldn't treat me and the perinatal psychiatrist couldn't fit me it? Ie. who would provide me with the required medical care (someone has to order blood tests, interpret them, and then give me prescriptions for my medication)? The office eventually said that I could come into the office in June. I was concerned that I'd still have to wait several weeks, but relieved that at least it wouldn't be the end of the summer. You shouldn't have to beg for basic medical care and I was disgusted with how much I had had to push to get even that appointment (what if I was less proactive or less able because I wasn't stable?).

Then they cancelled this June appointment.

I miscarried June 15, 2016. I didn't tell the perinatal psychiatrist's office that I miscarried though, because I knew that I'd be booking an IVF cycle again and my psychiatrist wouldn't treat me during it, so I'd need the perinatal psychiatrist very soon. I hoped that I would get in to see the perinatal psychiatrist before my first IVF cycle, so that she might warn me what to look out for with the IVF hormones, my condition, and the medication that I'm currently on.

The perinatal psychiatrist's office booked me in for an appointment near to the end of June this time. Then they called and cancelled again.

They then rebooked me for September. Then on the day of my appointment, they called to cancel again. They told me that the perinatal psychiatrist was off on leave and that when she was back (in 2 weeks) I would be at the top of the list to see her. They would call me to book me in in two weeks.
Well, it's now October and no one from the perinatal psychiatrist's office has called me. If I was actually still pregnant (and they don't know that I miscarried in mid June, so for their purposes I am), I would be five months pregnant and still would not have had an appointment with a perinatal psychiatrist (so, more than halfway through a pregnancy without ever having been treated by the specialist who is supposed to treat you for the duration of your pregnancy).

I find this level of failure of care in our medical system abhorrent. Is it because I have a mental disorder that it's acceptable that I'm not provided with a basic level of required medical care, that no one will treat me at all? Or is this just our medical system in general? One only has to look at a newspaper, online, or listen to people's stories to know that medical care in Canada leaves something to be desired. In Canada, about 50 cents on every tax dollar goes towards our medical system (and in BC we pay MSP fees every month on top of this too), yet our medical system is piss poor.

When I questioned the perinatal psychiatrist's office earlier in the year about what I was supposed to do (in the mean time) since my psychiatrist said he couldn't/wouldn't treat me and the perinatal psychiatrist couldn't fit me in, the medical office assistant suggested that until I was able to get in (which seems to be never in Victoria), my GP or my psychiatrist would just have to be instructed by letters from the perinatal psychiatrist over what my dose of psychotropic drugs should be, etc. Really!? If you told a cancer patient that they couldn't see an oncologist and that their GP would just be tinkering around with the radiation and drugs and doing their best to try to treat their cancer (when they had never been trained in oncology and had only read bits and pieces about it), it would not fly (and like cancer, mental disorders and illnesses have very high rates of death, including from suicide in the case of disorders like bipolar disorder).

I have a feeling that a lot of this intolerable situation with regard to treatment of mental disorders stems from the fact that it is still not acceptable to have a mental disorder or illness in our society (or at least not to admit that you have a mental disorder and seek help). It is shameful, the system is underfunded, these disorders are feared, shunned, seen as weak or immoral, and they are not treated with the level of care that other illnesses are (one only need look at the psychiatric emergency triage in Victoria- PES- where most patients are not given a bed while they wait half a week to two weeks to get into the hospital, but instead are expected to sleep sitting up in armchairs. That would never happen to a cancer patient or someone with a broken arm).

I asked my psychiatrist in June what I was supposed to do to get care if things started to go wrong. He said that I could always just go to the hospital if I suffered from a relapse. Oh great, so I could go to PES and sleep sitting up in an armchair for half a week to two weeks before getting into the actual mood disorders unit of the hospital? And I could be around psychotic strangers who could lash out and injure me or my baby (and I've been hospitalized there more than once, so I can tell you that people do have psychotic meltdowns from time to time where they must be restrained by security and the nurses, drugged, and dragged off to a restraint room- it  is not a relaxing or healing environment to be in for anyone). He told me that he could always get me on the waiting list for the actual hospital. For those who don't know, this can take up to half a year in Victoria, although he told me it might only take a few weeks (great, so if I'm suicidal, I can just wait around three weeks for treatment?).

Yes, I could call the perinatal psychiatrist's office yet again, but I'm so overwhelmed and overwrought with the IVF process, that I just can't do it right now. Maybe I'll do it tomorrow, just to check that they didn't make me an appointment and then forget to call me to tell me that I have an appointment (wouldn't surprise me given that they cancel appointments at the last minute). But maybe I won't call. Why bother, when I know that they won't have an appointment for me and if they do, they'll just cancel the appointment at the last minute again.

I've been waiting five months now for an appointment with a perinatal psychiatrist and it seems I'll be waiting a lot longer. It appears that in this medical system, it's every person for themselves and only a very few get an acceptable level of care (especially given the amount we all pay for this medical system). It's only the squeaky wheel that gets the grease and I can't imagine how many people are falling through the cracks.

P.S. I called the perinatal psychiatry office to check if I had somehow missed being told about an appointment (I didn't want to miss it and then have to wait several more months). The assistant said that the psychiatrist was back now and then she asked if I had a referral (so I guess that if I hadn't called I would not have been given an appointment like I had previously been promised at the beginning of September when my last appointment was cancelled). I told her that my referral was sent in five months ago and that I had been waiting to see the psychiatrist ever since. She put me on hold and went searching for my referral, which she found. She said that she could get me in next week for an appointment. She apologized for the long wait, but said that they've been short of doctors for months (don't they have locums?). I only hope that this fourth appointment time will not be cancelled like the other three have been so far.

Halfway Around the World and I Can't Stop Thinking of You

Whenever something bad happens in my life, my usual instinct is to flee (though other times fight is my reaction). This summer has been filled with vivid and perhaps drastic examples of me trying to run from the pain of my miscarriage after waiting years to become pregnant. 

View from the Nativity Tower of Gaudi's La Sagrada Familia in Barcelona, Spain

Going up to Kamloops to stay with my parents in law gave me a break from being at home in the usual routine of writing, housework, and seeing where the whole miscarriage scene unfolded. I caught up on sleep that I had lost, started exercising again, basked in my parents in law's love, and felt somewhat stronger when I returned home to Victoria.

Coming back from Kamloops I looked better rested than I had on the way up.

I then turned around almost immediately (four days) and left again for three weeks in Europe with my husband. We had been planning to go to Europe this summer or early fall anyways (depending on the IVF schedule/ pregnancy and waiting for the first trimester to be finished) so we seized the opportunity to do it in July before getting onto the next IVF schedule.

The cat was displeased with the reappearance of suitcases which signaled our imminent departure.

I had long dreamed of showing my husband Amsterdam and Barcelona where I had found so much wonder and joy as a teenager. Returning to the former 18 years later and the latter 20 years later was sure to be interesting. What new things would I notice? Would they be significantly different? The world is shrinking, how would that impact two of my favourite European cities? Would this cruise that we had received basically free of charge after our last disastrous cruise with Costa last year be better? I had never been to a couple of the Spanish Islands and Italian cities that we were stopping at on the cruise or Monaco, what would I learn from these places?

Exploring Amsterdam 18 years older than I was last time.

I was also nervous. What if something wasn't right after the miscarriage? After all, I hadn't been examined during or after it and had not had a D&C (it had just happened naturally). What if I discovered a uterine infection while I was away? Or what if the bleeding suddenly started again and became uncontrollable? If the condition was apparently stable before leaving, but hadn't been examined by a doctor and it reappeared, would it be a pre-existing condition, not covered by our travel insurance (yes, a lot of this anxiety is from my past as a litigation lawyer representing clients who were denied travel insurance coverage and other insurance coverage).

Panorama from our room at the W Barcelona.

The break away from home and all of the new sights and familiar sights were good (see my travel blog: www.tworestlesswanderers.blogspot.ca), but no matter where I went I was often preoccupied and sometimes even brought to tears, thinking about the baby that I had just lost. In the old protestant church, Oude Kerk, in Amsterdam, I lost it and started crying, despite the fact that I was in public, as my husband handed me a candle to light for the baby and one for ourselves.  I was halfway around the world, in someone's dream vacation (certainly mine), and unable to escape from this fresh loss in my life.

I was sombre lighting a candle in Oude Kerk in Amsterdam for our dead baby.

It proves that when you're running from yourself and your own grief, there is nowhere far enough that you can go. There is no escape. You have to feel the hot tears stinging your eyes, the tightness in your throat, the crushing feeling in your heart. You just have to feel. It's painful, but there is no escape.

The view from the W Barcelona's infinity pool.

Beauty around me, I scrambled to make sense of this world. I had expected to be taking this trip pregnant, happy in the almost certainty that I would finally have a child and now all I had was the bloated body of someone who had freshly lost a pregnancy. I couldn't help but ruminate. How could I not be able to get pregnant for years and then finally get pregnant on the eve of having IVF done and then lose the baby? Why is it that people who don't want to get pregnant get pregnant and actually carry the baby to term, but I couldn't? I know that life isn't fair and I've struggled with this concept my whole life (especially as a lawyer, sharing the pain of injustice with my clients, don't even get me started on insurance companies). My Myers-Briggs Personality Type, INFJ, makes me a very strong believer in justice, so really I'm just fighting myself. I guess I'll just never feel comfortable with how this world really is. But if you give up the fight, what is there left in life?

One of my favourite paintings from the Rijksmuseum in Amsterdam, Jan Steen's "The Dancing Lesson." Yes, I too loved to make cats dance as a child and I still do (much to Lamont's delight).

It being summer vacation, there were children everywhere. Harried parents, tired from travelling, and probably from their children's antics, didn't look grateful enough to be parents to my child hungry eyes. I know that children are annoying and try your patience and I get that not every day is a great day, but I've been waiting so long for a child, I hope that I'll appreciate every day if I ever become a parent. And it's hard not to doubt that I will ever be a parent, especially after this fresh loss in my life.

The remains of a dead teenager from Pompeii. I found the remains of the dead child too macabre to even photograph.

My husband I celebrated our eighth wedding anniversary on our last full day in Europe. We have grown more in love with each other every year (we've been together 10 years this New Years Eve), but a giant hole has been left in our lives, as we have been unable to have a child or two to grow our family and enhance our lives. We talked about children's names the night we met, having children was an important goal for both of us, and we've still be unable to name a child, hold a child, or move on to a new stage of our lives.

In the Grand Central Hotel Barcelona's rooftop infinity pool on our eighth wedding anniversary.

On the other hand, we've had much more of a chance to be adults without children than most people ever have (except those who never have any children). We've been able to both obtain advanced degrees, try out various and diverse careers, have more leisure time and hobbies, travel the world, and get to know ourselves to an almost unnerving degree. We've skipped across various islands of French Polynesia, wandered north to south through Japan, and strolled through many countries in Europe together (this year and last year) and Morocco (last year). Dreams like returning to Amsterdam and Barcelona, seeing a giant EDM concert with David Guetta in Ibiza, exploring the ruins at Pompeii, or gazing off into the sea in Monaco where Grace Kelly might have stood, might not have ever been possible if we had had children earlier.

Taking in the famous Monaco view.

In Ibiza for David Guetta's "Big" EDM event.

I thought that returning from Europe, my resolve to proceed with IVF would be stronger than when I left, but I'm finding the contrary. Perhaps I'm just exhausted. Also, my period which was supposed to show up a few days ago (so I could inform the Victoria Fertility Centre what my Day 1 is so that they can book me in for an IVF cycle starting with my next cycle) has not shown up. Perhaps my body is still confused after the miscarriage, or by the 9 hour time change, or by traveling, or there is that other remote possibility that I can't risk hoping for anymore (even if I were to be pregnant, which is highly unlikely, what if I miscarry again? I don't think I would survive that mentally).

Lamont has the right idea. Take it easy.

So, now I wait to see where I am mentally and emotionally with regard to when to start IVF and physically for my period which is necessary for me to even tell the clinic when I would be ready to start IVF. Sitting with the unknown is terrifying and highly uncomfortable, but at least I am home with my cat now. Lamont's the best life coach I've ever met.

My guru gazes off into the distance, fake crow disciple awaits the latest life lesson.