Sunday, November 11, 2012

Random Rant

So, I'm home, and I have lots to say about being back but today, I am going to go on a bit of a rant regarding the goings on for people seeking eating disorder treatment in Canada.

There has been an ongoing uproar from suffers about not being able to access out of province care for their illnesses. It makes sense to be looking beyond what one has tried and tried again in one's quest for recovery.

Last year, the Ministry of Health, many health authorities, and the provincial ED program took quite a beating as people with anorexia and bulimia bravely brought their struggles to the spotlight. The situation in BC infuriated me and continues to – to an extent. One thing I need to clarify, and finally have the public words to support what I knew of BC to continue this discussion, is that it is anyone's right to seek out of province care in another hospital. It is Canada, and without any sort of specialist's input, one can get a referral to, and access hospital-based care outside of their province of residence.

When I said this last year, supported with my own experience, I was attacked as badly at the ministry if not worse because it was so personal. Who was I to say anything when I had been sent to boutique treatment in Europe, right? Right. Poor little rich girl who was already getting what she needed. Rich? Who are you kidding? Desperate, and fortunate to have family and friends that were willing to sacrifice more than I will ever know to give me the opportunity to get well in the environment I needed, is more like it. I eventually shut up, then, because it wasn't a battle I needed to fight. Despite speaking from experience and with knowledge, I was told I was wrong. I still don't want to become too involved in all this, but there needs to be clarification and credit given to the people who really are trying to help the best they can. So, I quote from a article, the rest of which regards the personal story of someone else and is not pertinent to my discussion today.

“Ryan Jabs, media relations for the Ministry of Health said the ministry recognizes the tremendous challenges individuals cope with on a daily basis dealing with complex medical issues, such as an eating disorder.

"It is important that any client receives the most appropriate treatment to meet their needs, whether that is in an outpatient, residential or inpatient setting, as determined by clinical experts," said Jabs. "The ultimate goal is to help people recover and live in their own communities - and we need to ensure supports are available for people close to home.

"Clinicians work closely with all their clients and their GP to develop and maintain a care plan to maintain a healthy lifestyle, which includes psychological support, health checkups and dietician support. However - and while we will not speak to individual cases - we cannot force people into care; clients need to be willing to continue to participate in their care."
Jabs the ministry is not denying anyone the option of seeking treatment outside the province.

"Anyone can access hospital-based care for an eating disorder in another province, as long as they have been referred by a BC physician and accepted into the program," said Jabs. "B.C. will cover the cost of this treatment through our reciprocal billing agreement, and no pre-approval from the ministry is required.”"

Within these few paragraphs there is a bit of jargon and towing of party lines, but let me speak about it from my experience again.

First in Vancouver, the provincial program did what they could for me. Eventually, like Jabs mentions, they worked closely with my GP and decided that to keep me in my community was better because it allowed me access, with the frequency I needed, to inpatient care. I also had frequent access to affiliated health staff such as counsellors, an OT, and an RD. I saw my GP weekly at the very least, usually more frequently.

The “clinical experts” involved through the provincial program did their job. They admitted me to their program when my name came up on the waitlist; a couple of times they personalized it as best they could in that they gave me a longer stay or options regrading passes and/or feeding schedules. They continued to see me for follow-up clinic appointments that, although I felt were unnecessary, were part of their communication regarding my care with my GP. I was offered the residential program that is available here, they worked to prepare me, physically, for it. In the end, it did not fit for me and we all agreed on that. Though my experience and discharge were traumatic, we all tried our best.

Jabs goes onto say that they cannot force people to participate in treatment. For the 3 years I spent largely in my wee northern community, very rarely was I certified in hospital and never in the community. My GP understood the importance of having me feel like a part of the team and not governed by said team. As needed, he drew on the support he saw in the community. I was doing no one any favours by participating, except myself. I knew, that despite my emotional mind not understanding what was going on and despite how uncomfortable the ideas that were being posed to me were, I needed to let someone else know better.

Within what we had to work with, I tried. I needed to eat, we arranged individual meal support. Was it optimal? Probably not. I “got away' with many negative things but we all tried. Even when I refused to eat or tampered with my supplements, the people involved in my care knew that the regular contact with me was essential. If I was trying to put the wool over one person's eyes, I might be too exhausted in a day or two to keep up the act and therefore, someone else was able to assess my status and possibly intervene at the right moment. The commitment by those involved with me, despite the tricks I tried to pull, sent me a subconscious message that they cared about the me that was really there, inside – masked by all the negativity of an ED. Just because meal support was labelled as such, it went beyond that.

There were frustrating times. There were attempts to have me abide by contracts that told me what I needed to do to stay out of hospital. There were days where I tried to give them all the middle finger and walk away. Regardless, when I inevitably came back (sometimes hours later, days at most), they were there to help me.

Is this a common occurrence? I'm not sure. I hear people saying they've been “dumped” by their counsellors or dieticians and I have to believe that is their experience. But why? Is it that key component to being a willing participant? Was it the flexibility/fluidity with my care that kept me engaged? Partially, I expect it was. I also know that a huge part of it for me was that my team was not sticking by me just to keep me alive but to get me well. None of us knew how to do it. We did know that there was no text book answer or algorithm to follow for Julia, so we were creative – they in positive ways, and me more often in negative ways to protect my ED.

They seized the moments when more of Me was showing and worked with that. They got to know, as time went on, who was speaking at any given time – Julia or her eating disorder. They were tough years for us all, but we did it – together. There was very little force. The only thing that I felt was forced was that no one was going to give up on me.

Lastly, the ongoing saga of people applying for out of province care and declaring they have been denied funding. It is Canada. We can access hospital-based care in any province we choose if we have a referral from a doctor of any sort who feels strongly that we would benefit from something different. There are no special funding requests needed. To be clear, this is just for hospital-based care. As Jabs says, there needs to be the referral and the acceptance of the patient by the program referred to. If either of these parties feel that there is care within the province that could be tried first, one needs to go through the motions.

When people saw me going off to a world-class treatment centre overseas, of course they had emotional reactions. So did I, as I felt so completely unworthy. Part of me knew, however, that it was the last stop for me. It was going to work or I was as good as dead. I also knew that I had done my best within my country and worked as hard as my sick mind would allow me. I tried the provincial program repeatedly inpatient and the residential program. I tried community based care. I tried out patient in Vancouver. I requested to try the program in Edmonton and that was facilitated within 6 weeks from referral (from my GP and acceptance to the program by the director there) to walking through the doors of the U of A hospital. Nothing fit or provided lasting change/relief from my illness.

I look back with pride in myself for working as hard as I did with the little strength I had. I applaud the teams in each place that worked with each other to provide the best care they could for me. I sometimes proclaimed that x, y, or z would not help me but even with that resistance, I knew I had to try because I was aware that I couldn't not try something new/different.

Hospitals in all provinces do the best they can to treat these complex illnesses. I know that not everyone has access to the degree of compassion I received from my practitioners. I do know that every Canadian citizen regardless of diagnosis, has a right to the provision of care that best suits their needs as is available. A key part of all of this, is the willingness that Jabs speaks about. I have heard it referred to as “readiness” and for me, that was the wrong word. I never felt ready because I had no idea what was on the other side of the hell I knew I had to walk through but I was willing to try and to try again. Yes, eventually I reached a very hopeless place but it was at that time when I was able to access when I needed and what worked. For someone else, to keep trying something new, to keep working with whatever few resources they have, something might click sooner or in a different way. What works for them will manifest itself as the time is right.

The purpose of my rant, today, was to bring light to the availability of hospital-based care for all Canadian citizens but also to encourage people to work hard with whatever they have. Keep communicating even if the possible result scares you. I've been there, I've had to tell people exactly how I was feeling emotionally or physically with the understanding that I could lose my rights to anything in a flash because of my honesty; I've had to do the same thing over and over with little tweaks to try and achieve a different result; I've worked with creative teams to try and make things different with the resources we had.

There is not a person out there who cannot say I didn't try everything I could. Yes, I bailed on treatment a few times because I knew (the real me) that it was not for me but that didn't stop my search for something that might work and even trying what I was fairly sure, wouldn't. I believe it was partially that commitment on my part that kept my practitioners engaged. Also, please don't fall prey to the idea that only “specialists” know how to deal with people with eating disorders. That is far from reality. My team learned from me and with me about what might work for me and that kept me going.

If one really thinks that a set of four different pastel coloured walls are going to make a difference – possibly. There are a few variations in programs around the country, yes. Beyond the program is the possibility to meet people who will work for any individual. I also believe that those people are available in any program, hospital, or community. Those people are available in day to day life – let them be there.

So, yes, keep exploring options and remember, it's not always as difficult as some people make it seem, to access different treatment. The actual process is difficult and painful; lonely and can feel unbearable – but that doesn't change with location. In the end, willingness is key and from there, the possibilities are endless.

1 comment:

  1. It is easy to think that if you could just go to the treatment program you want that things will be better - however, treatment is very very difficult regardless of where you are and you have to have the desire to fight inside you for any of it to work. I did have the experience of going elsewhere and getting treatment that turned out to be more helpful to me than anything I had experienced prior, however, I also know that, if I don't keep my mind focused on my goals when I have less than what I think is ideal treatment, then I lose many opportunities to learn and perhaps find help where i never imagined it would come from. (And it is true that if one can get treatment in their community, there is a greater opportunity to transfer and generalize skills to the environment that you will be living in. No matter where you get treatment the goal is to reclaim that life outside hospital and treatment.)