Sunday, 8 September 2013

The Battle of our Lives (Part 2 of 2)

If you missed part 1, click here

Fighting for our son’s life...

We knew that we couldn’t accept that answer of “no”. Our son’s life was on the line. The specialist agreed to meet with me along with our son. I expressed our shock that he was refusing to try other treatment options on our son, even though two other doctors felt that he needed something more.

When trying to explain his decision, the specialist drew a chart on the whiteboard outlining the treatment paths that people with my son’s illness were supposed to take in our province. What was most shocking about this treatment plan is that patients start out with the least effective treatment option and only move to the most effective when the other options fail to work.  Huh? It didn’t make any sense to us. Why wouldn’t you start patients out with the best treatment?  Why wouldn’t you want to give them the best chance to get better?

Let me be clear, the specialist did not say that the treatment path they offer goes from the least effective to the most effective. Far from it. He made it sound like a wonderful plan. He may have gotten me to fall for it early on when our son was first diagnosed, but since that time, I’ve done my homework. I’ve spent more time researching treatment options for this illness than you can ever imagine. It had become my part-time job. I know that what works for one person, will not work for another. Not for this illness or any other for that matter.  I also know which treatments continually have the highest success rates in studies, and it wasn’t the one that was given to our son.

After a lengthy discussion, the specialist was clear that he was not reversing the decision. Our son was to stay on the same treatment plan until it started working for him. It didn’t matter that our son’s health had gotten worse. It didn’t matter that he could die. It didn’t matter that our stress was going to continue. His treatment plan would continue unchanged and that was that.

Things continued to get worse...

I cried all the way home. How could they look me in the eyes and say that they weren’t going to do any more to help our son.  How could they look at our son and say he would have to keep following the same plan even though he was still suffering and he knew it wasn’t enough. How?

Our son was devastated that his treatment plan was not going to change, and he no longer had hope of ever getting better. He stopped his treatment altogether and went on a downward spiral to self-destruct.

We were forced to watch this take place with no power to change anything.  We were constantly waiting for bad news about our son. We had no faith in the very system that was supposed to help him.

Too little too late...

After another year of hell, our son was finally offered the chance to try another treatment option.  By this time, his illness had progressed to being as bad as it could get. We knew that what he was being offered now, although on the next level on the chart, was too little too late. His illness did not respond to the treatment and escalated quickly back to the previous level.

With broken hearts we’ve watched our son’s health decline causing him to miss out on everything that healthy young people his age were enjoying. He was a victim of a broken, underfunded system.

While our son continued on a downward spiral, I watched other patients get the best treatment without having to follow the “chart”. They got to skip the steps – even the ones whose illnesses were not as advanced as our son’s was. They were the lucky ones who won the treatment lottery.   

Unfortunately, some of the ones who didn’t win the lottery paid the ultimate price. I do not want this to be my son. I do not want this to be your child either.

By God’s grace, our son is still alive to fight another day.

Thankfully, the government now seems to be paying attention to this issue but talk is cheap. I don’t think anyone battling this illness – or their families – will get excited until we see action, meaningful action that will save lives.

Enough of that foolish chart and the lottery system. Being treated shouldn’t be a matter of luck. Every patient deserves an equal opportunity to get better. They deserve a treatment program that is right for them. 

It is hard enough to have a sick child. Families do not need the added stress of inadequate treatment when it is not necessary.  This is not an illness without treatment, but it is certainly one that goes untreated for many regardless of their age.


Illness = addiction
Specialist – addiction worker

Food for thought....

Did you feel differently about my son and our family when you learned that the illness was addiction? Unfortunately, many people, including some who work with addicted individuals, hold biases about addicts because they don’t understand the illness for the health issue that it is.  Because of this, we are left with a broken system that is not working. A system that is based on an old fashioned notion that looks at addiction as a moral issue, despite how that theory has been proven to be wrong time and again.

Individuals battling addiction deserve to have access to the most effective treatment just like anyone battling any health issue. Can you imagine a young person with diabetes having to go through all that my son went through before getting the proper treatment?  Would we ask them to start off with the least effective treatment and suffer for years before being offered something else? Would the parents of a youth with diabetes be denied the opportunity to discuss their child’s illness?   Would only a handful of youth with diabetes get the proper treatment while the others have to go through phases that are least effective? I think not!

I hope this article gives you pause and a chance to reflect on one of the biggest health and social issues facing Islanders today. While I couldn’t possibly cover our whole journey in one article, I wanted to give you a little taste of what it is like to love a child who is addicted here on PEI and elsewhere in North America.


  1. Our system is unforgiving, our youth are shushed to silence! Shame on the people who are the very one's that are to help heal! This is not breaking news, it is heartbreaking reality on our "gentle" Island. Standing for change and compassion for our youth who have fallen to ignorance in need of treatment.

  2. Rose this made me cry, Because your son is my son!
    You have taken this to a level that hopefully those with children that do Not have this illness, will understand! Shame on those treating our son's,rather lack of treatment!!

  3. "When trying to explain his decision, the specialist drew a chart on the whiteboard outlining the treatment paths that people with my son’s illness were supposed to take in our province. What was most shocking about this treatment plan is that patients start out with the least effective treatment option and only move to the most effective when the other options fail to work."

    "...I watched other patients get the best treatment without having to follow the “chart”. They got to skip the steps – even the ones whose illnesses were not as advanced as our son’s was."

    These contradictions suggest to me that it is not the fault of the province, but rather the specialist who refused to budge! I don't think it should be directed entirely to the province here.

    I wish you and your son the best. I hope he gets the treatment he deserves and is able to get well.

    1. Thank you for your feedback and well wishes.

      I know that this post may sound political with my putting responsibility on the government but it truly is not. Addiction knows no political stripe. The reality is that it is the government who funds our various levels of healthcare, including Addiction Services, which is grossly underfunded. That is why you've been hearing so much about it in the past year. A significant investment needs to be made. Islanders are speaking out, including those on the front lines.

      Our family's story is not unique. This is the story of the majority of people seeking help for addictions but, like I said, there are some who have won the treatment lottery so they would have a completely different story to tell (lucky them!).

      I couldn't write the whole story because it would take too long. What is not in there is that a committee meets each month to decide who can go on to more intensive treatment. The committee consists of management level folks in Addiction Services. It was the committee that turned down my son and so many others, not one person. A couple of people from the committee met with us. I wish it was as simple as one person being stubborn and not changing his mind. That would have been easier to deal with because we would have had the option of requesting to see someone else.

      Thanks again!

  4. This article truly captures the audience's attention and leaves you questioning a lot.
    It is 100% true that people look towards others with addiction as a moral issue, although those people couldn't be more wrong considering they are commenting or reflecting on an issue they know nothing about. Addiction IS a disease with it's own treatment system such as cancer is a disease that claims thousands of lives each day. The same goes with addiction and it is so sad to see how the island of ours lacks so much towards facing this issue.
    People look on the national new's and see various stories about political scandal and corruption but neglect to see the very corruption within their own back yard.
    So many islanders are left untreated due to addiction and the stigma behind it. So many people think it's just a matter of choice which is so far from the truth.
    I myself have worked with addictions in a community off island and have seen the tremendous impact it has not only on the life of the addict but the family and community associated around it as well.
    The island's health care needs to be reevaluated especially towards working with addiction. It's absurd that a committee who only see's a person's life as a dollar symbol can make such an important decision that affects not only the life of the addict but the life of those around.
    My heart goes out to this family and the incredible strength, determination, stamina and courage it takes to face and speak publicly about such an issue.
    I can only say that you are not alone. That this fight is not going unrecognized and that you have the support of so many others. I hope to one day soon read about the success of your trials.
    Much love, support and respect to you and others who are facing such a fight.

  5. Rose, once again you are speaking for alot of us. Myself and my family arein this battle and I'm afraid that nobody will be the winner. This have been four years of a nightmare that we live everyday. I just cut the article out of the weekend paper about the Standing Committee Input for PEI. Will this help, I hope so but I am doubtful. Our health care system budget is being cut by millions of dollars. How will the government help us. Our family has been left to sink or swim. That is how I truly feel. Whatever success we have will be our own doings not from the help of Addiction services, Mount Hebert, Child and Family or the Health Care providers. My strength comes from readings like this blog, my friends and my therapist. As of now , our daughter is a lost soul who I pray for everyday and hopefully she will find her way through her own will and strength because right now nobody out there is helping her and really and truly only she can help herself just like the rest of our family is doing. Thanks again Rose

  6. The Canadian government are the biggest drug dealers and they should be held responsible for there actions !!

    1. I agree strongly with this statement, I am also in the same position with my son and waiting for the same thing to happen and it almost seems that either you have to know one of these special doctors personally or your child gets to suffer,it should be available for all our children not just a chosen few and I know a few people who died while waiting for this so there is no time for a plan ,action needs to be taken now!! How long do our children have to suffer?

    2. God bless you! This makes me so angry!! I can relate to this!

  7. God Bless You Rose and all the people in this story.

    1. Wow!!! Thanks you for sharing this story..I felt like it was me telling the story. :(

  8. Several of my child's friends now have hepatitis c. One of these friends has been in detox 6 times since February, her addiction got progressively worse and she began injecting drugs, tried to quit but and over and over she was denied methadone. She developed hepatitis c and was given methadone right away... the process is not only insane but is actually costing the government much more. Compare the costs of multiple detox visits, Strength program, the loss of health, and a stronger addiction, and treatment for hepatitis c to a methadone/suboxone prescription in February...seems like a no brainer! Thank you for sharing your story Rose and for being a voice for such an important issue.

    1. The government only understands dollar & cents...Well they should do the math..the cost of Jail..Prison..HepC..And that is just our children!! The physical & emotional toll it takes out of we Parents..Cost the health care system also..Geez it does not take an Einstein to figure out a Good treatment program would be far less Costly!!

    2. You're welcome. We - as a society - are all in this together. Let's hope that things will change so that Islanders can get the help that they need. Research suggests that every $1 spend on treatment saves $12 in other areas, including health and justice. That's a good investment!

  9. I understand completely the situation this family is in. I myself was an addict, injecting opiates daily just to have the ability to get out of bed in the mornings. Having been to Mt Herbert 3 times, meeting daily with addictions and going through all the recommended steps. None of that did anything to helpy addiction. I am clean now, but no thanks go to the pei health system. I left the province. While putting myself in a position where I knew no one and had no access to drugs worked for me. I realize that is not a possibility for everyone. I once thought the only way I would be drug free was to die. Thanks to 1 good friend I learned otherwise. It is a tough road to be on but don't give up. It is possible to beat this disease.

    1. Congratulations on your recovery! Your story will provide hope for so many who visit this blog, including me. I wish you much strength and a beautiful future.

    2. A lot of these drs are prescribing opiates to patients and getting people addicted to them. This then in turn has an affect on our health care system as we now have people who are suffering from a dr inflicted drug addiction. It is all about the money and not about the human life. This is not only in treating drug additions, but in all other illnesses!!

  10. I so agree with what everyone is saying here. Two weeks ago, my child, who is of legal age, ended up in Emergency because of taking someone else meds and has been for two years. She went to QEH after going through first the doctor, then addictions then to QEH. The psychology Doc meet with her and then sent her home, despite what I told them. Her boyfriend should have argued to put her in but didn't!!! I don't know what my rights are, but she should have stayed there where it was safe and got the help she needed. Instead, they sent her back where she has access to those meds. The system sucks!!!

    1. Yes, the system needs a lot of work! Here's hoping things will change SOON.

  11. I truly 'enjoyed' (if I can use that term) reading your account of your son's illness and a system that was completely unresponsive. It is a story that is sadly repeated time and again on PEI. I am saddened that in this day and age when we have so much information on 'what works' for youth and addictions that our province remains stuck in a very patronizing and outdated mode of treatment. Suboxone, for example, is recommended for many people over methadone yet in PEI (and most other provinces, to be fair) a person has to demonstrate that methadone is not a viable option for them first! The goal of substitution therapy is to stabilize an individual so they can remain in treatment, hold down a job or go back to school; in other words, to rejoin society as a healthy functioning member. My question is around the treatment modality - how is someone supposed to lead a so-called normal life if they are required to go to a pharmacy or Dr's office daily for their methadone treatment? How does that achieve the goal of reducing stigma? Of normalizing someone's life? Suboxone is as effective if not more effective for many people and after a short period of time people recovering from addiction are able to receive a monthly supply similar to any other prescription. This should be the first line of treatment for many people, and I believe the stigma associated with attending a daily methadone clinic is a deterrent for people who need help with opiate addictions. There are so many changes PEI could implement at very little cost, this being just one of them, that could save so many lives, stop the progression of the illness earlier, and keep our young people away from criminal activity. What we need are more vocal advocates such as yourself, for I fear that if we sit back and 'hope' the government will come up with a plan based on the evidence we will be no further ahead in another 10 years.

    1. Thank you for your feedback. Yes, I agree that the methadone program does have drawbacks, such as going to the pharmacy each day. It would be great to see this change at some point. I also agree that there are many ways to make things better that would cost little to nothing for the system. You sound very knowledgeable. I hope that you are advocating somehow too!


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