Lost in the labyrinth

“In health there is freedom. Health is the first of all liberties.”

— Henri-Frédéric Amiel (1821-1881), Swiss author, philosopher and critic

One of the most satisfying things about working in the media is that sometimes, by telling people’s stories, you can help make a positive difference in their lives.

We’ve all read articles that resonated with the public and prompted outpourings of generosity — stories of folks who had fallen on hard times and the goodwill that flowed in response.

In the news business, we tell stories about families left homeless by fire, children who need costly medical equipment, food banks with bare shelves, and abandoned pets that require life-saving medical intervention.

Those stories, while sad to hear, are gratifying to relate when they wind up at a happy ending, with the crisis abated — at least in the short term.

But behind every story is a real person, and not all stories are simple or end with a satisfactory resolution.

And there are some — a parent’s struggle to regain custody of a child, for example — that we cannot even try to tell, because privacy regulations prevent us from getting the information we would need to provide balanced coverage of the problem.

That’s frustrating, and not because you want to breach someone’s privacy or because you know there’s a good story there and you’d love to tell it, but because you wish there was something you could do to help and you can’t.

In the past couple of weeks, I’ve heard two such stories, and while privacy legislation prevents me from going into too much detail, what they have in common is that they point to a real need in this province.

I recently received an anonymous letter from an inmate at Her Majesty’s Penitentiary who is unhappy with the psychiatric services provided there.

Those services are currently being peer reviewed because there have been a number of similar complaints, but that peer review is of no direct help to him in the short-term.

The man said he doesn’t think new inmates are assessed thoroughly enough before decisions are made about whether or not they can remain on medications prescribed to them by other physicians.

“If these meds are used in any manner to get a high (for example Ritalin, Valium, codeine),” he writes, “it is determined not needed. If you cannot get a buzz (Zantac, allergy meds, etc.) chances are they are continued.

“Now, there are people here that do just abuse medications to get high — that I am not disputing. But there are those here who really need their meds. People with ADD, ADHD, nerve problems, sleep problems, and are just plain psychotic without their meds.

“Other inmates are the ones who have to put up and live with those people. Sometimes it gets plain scary with them. … I ask that someone look at inmates’ medical files and then you will see what I and many others are speaking of.

“I trust you will publish this so we can have a voice into what is being done to us.”

Last week, I heard twice from a man with bipolar disorder who says that ever since his psychiatrist moved away, his medication has been changed by other doctors and his mental health has deteriorated. Indeed, his level of lucidity seemed to diminish between one phone conversation and the next.

He says he is at the Waterford and has been unable to get access to his own medical files so that he can talk to someone about his concerns.

Both men contacted the media as a last resort, because they are in positions where they feel they have no voice.

Now, there are plenty of health advocate companies out there willing to help people navigate a health system that can seem labyrinthine at times — if they can afford to pay the price.

One company, Family Health Advocates, notes on its website: “The maze created by an intricate health delivery system is often overwhelming. At a time of crisis, looking for services in a timely manner is often beyond one’s capabilities.”

I’m sure they’ve helped many of their clients find peace of mind. The trouble is, not everyone can afford a health advocate.

So, who will speak for them?

People struggling with depression or addiction are already vulnerable, and they may have no one who can help them ensure that they get the individualized care they need. People in prisons and psychiatric institutions don’t have access to the research tools and resources they might be able to use to help themselves — hence the anonymous letters, the distressed phone calls to the media.

We have advocates in this province for children and youth, and a citizen’s representative who can help resolve disputes between ordinary people and government agencies.

Perhaps it’s time for a citizen’s health advocate, someone who could intervene at a patient’s request to help resolve medical issues that are affecting their quality of life — and keeping them inside institutions.

It takes courage to speak out publicly about something as personal as your health, particularly with the stigma that unfortunately is often still attached to mental health issues.

It must be even tougher if you feel like the right people aren’t listening.

Pam Frampton is The Telegram’s

story editor. She can be reached by email at pframpton@thetelegram.com.

Twitter: pam_frampton