Is it me now, is it me later, or is it me not at all – challenging health care in Ontario

In my head I tell myself to move cautiously. I can see obstacles in the way: I am an outsider when it comes to physical health and wellbeing. Yes, off course, I spent the last two years navigating mental health supports. The issue is when you set a goal of improving physical health for the year ahead, and out of necessity you have to engage the larger overall health care system, it’s a different set of challenges altogether.

Systems develop over a long time and move in very small, very calculated and calibrated ways. Threats of rapid change are met with a circle-the-wagons defence, with everyone on the inside heading for the basement tornado refuge, emerging when the storm passes with closer intimate bonds. I believe babies were made in air raid shelters during the Blitz. Similarly, institutions where conflicts occur daily over budgeting and policy resort to a kind of beurocratic inbreeding when confronted by outside threats.

 Fundamentally, I am an outsider. I don’t know the language or the protocol. My mind has been honed to a business, project management, deliberate and nimble knife edge; up front negotiation, clarifying and evaluating, then charging forward. My life is a schedule, narrowed down to 15 minute actions. My communication is electronic; I can track it that way. I make notes, outline, and communicate very effectively. I hold on to adages like, “If it’s not in my schedule, it doesn’t happen!”

Yet, in small ways, I have been able to make significant changes using technology. I am now able to take my blood sugar levels three times a day: 9 a.m., noon, and 4 p.m. It’s in my schedule. As a Type 1 diabetic I haven’t been able to track this for years. I’ve gone further and make notes on diet, insulin, and recently I replaced lunch with a diabetic shake and power bar – the levels are starting to even out and are closer to normal than in years!

 The ‘system’ has its own way of doing things. To see a specialist to review my diabetes condition I am told to attend a hospital education program. Uh, oh, not only have I been through this in the past with diabetes, I’ve also been through so-called programs with mental health supports. I can assure you that in order to ‘graduate’ and move on, you have to conform. They finally get you in a One-Flew-Over-The-Cuckoo’s-Nest kinda way.

I don’t have time to go with the flow! So, I am now a disillusioned outsider and I haven’t even begun. To be clear, I am not resisting change, or help. I have put years into understanding me, peeling back the onion. Developing intelligence early in life, along with curiosity and creativity and a need to evaluate the world, is a very dangerous thing. Do not encourage your children to question authority or think divergently. It is dangerous and will lead to a lifetime of struggle and mental health issues. I am living proof! It is abusive for parents to encourage their children to think for themselves. If your children show the slightest spark of intelligence, take away their books, pencils, and subject them to cold baths. Hurry, do it. You don’t have time to waste. You must think of their future happiness and success!

Hyperbola aside, I am still left pondering if the health care system in Ontario is going to be my next cross to bear. Do I have the capacity or the energy, or will I end up bitter and declared “difficult.” Perhaps, if I can manage the process, I will create small wins over time – and do all the things I have learned through experience and practice – just maybe I’ll come out of this year OK.

Finally, I saw a clip in a documentary on Thomas Edison this past weekend. Most people apparently think of Edison as trying over and over again to create the light bulb. A historian in the show mentioned that Edison spent little time dwelling on past mistakes. In contrast, he used creativity and imagination to create new solutions to problems daily. I’ll consider this approach but I’m also reminded of the last scene in Cuckoo’s Nest – Chief Bromden finds McMurphy in bed after being lobotomized. It’s the final push the Chief needs to escape. We wait all film for this breakthrough moment. I’ve been waiting a while too.

 

Metadata

Thomas Edison – sound bite – didn’t look at past mistakes

Health Care System – complex environment – outsider – new language and environment

Mental Health – personal experience – incremental change works best – 2 years

Commitment – thought/ stress/ time available/ impact/ attention span

Capacity – small additions to established patterns

Process – overwhelming – mapping landscape – burn-out

Approaches – cross to bear – conflict – shut out – accessibility – difficult persons

Recording – note-taking – linking to sources – comments/blogs/articles

 

 

Open Letter to My New Endocrinologist

Well – that happened!

Not quite sure where to start, or if it will matter anyway. I don’t expect this to be read, least of all understood and considered; however it behooves you to listen to experience.

I presented myself at your office with several challenges and opportunities, key of which is my determination to move forward with health goals in 2015 – a new approach after failing again and again for years. I was scheduled several months ago, though I changed the appointment because I knew I wasn’t ready – now I am.

I gave honest and forthright input into various conditions, and how I am pursuing a rational and realistic approach to healthcare moving forward: Incorporating structure in my life, incremental change, monitoring and gathering data, and setting achievable goals.

I understand that time is a precious commodity – it is fundamental in my life as a project manager, though I’d like to step back for a minute and outline some history briefly.

• 5 years with diabetes
• Defaulted on commitments with previous specialists
• Defaulted on commitments with education clinic programs (twice)
• Mental health issues – depression/anxiety/ADD/ Bipolar

What I want to summarize about this is I have had to fight my way to this point – through crisis and adversity – managing career, family, and all the pressures daily to succeed, to be dependable, and to be productive. I have done it on my own – and determined the path that works for me. I have put processes in place to address challenges, assess options, and keep going.

My prediction for a successful outcome with your recommendation and referral to an education program is limited to about 40% or less. I’ll take it one step further and say that I see two outcomes:

  1. 1.Attempt to access consultation with yourself on improving my diabetes – through engaging in a clinic – though I see this as an uphill battle wasting time that will end in frustration and disengagement.
  2. After going through an uncertain process over the next several months when I don’t have time to dispose and negotiate, find myself back on my own – and this time I’ll take care of it my way.

I could go into detail about my options and experience with diabetes treatment and clinics, though I’ll make the following clear:

• Education programs are not tailored to the individual. It’s a shoe-horned approach.
• Information is often superfluous – or not presented with participants learning in mind.
• Change is “expected” by practitioners, who see clients as malleable and able to incorporate all – as though they were empty vessels.
• Conflict by practitioners is the preferred response when challenged for any reason.
• Practitioners are dismissive – not supportive.

Search engines use tags to narrow information as metadata. I randomly created some tags summarizing my appointment at your office to give me key words to reflect on. They are quite revealing:

Rushed; Hectic; Up and down in different rooms; Resident – not primary doctor; Not taking time to listen or hear; Shoe-horning; Unable to communicate the way I needed; Was met with ‘we know best’ approach; Overlooked in the process to get out the door and move on; anxiety and experience – déjà vu; Stress and prediction of poor outcome; No follow up scheduled; Wait and see approach – not proactive; Contradicted/ opposed; cynical; no encouragement.

In conclusion, I now have to assess the consultation and try to gain some kind of perspective, to avoid cynicism in my life and see what I opportunities I can squeeze out of the experience. One thing’s for sure – I am not going to ‘own it’ if it goes South. I have better things to do with my time, like moving forward.

I hope this input is valuable and I await a call at some future time, for a program of unknown length and content, with uncertain outcomes.

Regards

Brian Scott.