CBC on NSMoms progress, government delays and CPSNS refusals to collaborate.

NSMoms is a group of caregivers advocating for a compassionate mental health and addiction system. They have all either lost a family member to suicide or are actively navigating the health-care system with a loved one. Their website is nsmoms.ca. Nearly a year ago, we spoke with the group about the push to have an amendment to the Personal Health Information Act be taken up by the provincial government. That happened and became law in April of this year, but the group says they’d like to see health professionals trained in this faster.

Nancy Saunders is a founding member of NSMoms and co-facilitator of a suicide loss support group. Cyndi Corbett is a caregiver facilitator of a family support group. I spoke with them in the studio, where Nancy started by explaining the change to PHIA.

The law was in the Personal Health Information Act, clause 38(1)(d), and it was the clause that defined the criteria for when clinicians could disclose personal health information without consent. The criteria used to read that disclosure could happen if the disclosure would avert or minimize imminent and significant danger, and the province took the word “imminent” out.

So, it did result in physicians and clinicians being able to have a bit more proactive intervention when there was a mental health crisis. So, it was a good change. I believe in the interview that we had with you that day, we said that our focus would be now on making sure that that clause, that change, was a catalyst for real culture and practice change. That’s exactly what we’ve been focused on since then.

There was, I would say, very inadequate information and preparedness by government for this change that occurred on April 1st, but we have been working very hard trying to get the information out there to the regulatory bodies, to government, to all of the health-care professionals and faculties and schools.

One of the key colleges that we have tried to work with is the College of Physicians and Surgeons, and they have refused to meet with us. We’ve been wanting to share some of the practical resources that we’ve developed to help physicians communicate with families, and we’ve written four letters and have received four refusals to meet. So, we feel that’s an important step that needs to be taken.

Notably, we’ve had very much success in working with the Faculty of Medicine. They are collaborating with us to adjust their curriculum and continuing professional development to include the new law, and actually a lot of related laws around the exceptions to privacy. We are delivering a 90-minute session at the Dal Fall Refresher this November alongside the Canadian Medical Protective Association to teach doctors about this law and related laws. Hopefully, we’ll have a lot of attendance there, but we’ve been really focused on using all of our resources to get the information out there to everyone that needs to understand this change.

Cyndi, I want to bring you in here now. Tell me more about your work with those family caregivers, and what do family caregivers know that the health-care system may not be aware of?

Simply put, family caregivers most often know something is wrong long before the system does. We notice changes in daily life, what our loved one’s norm is, risk, sometimes once upon after diagnosis, medication, side effects, housing, just basic day-to-day functioning.

One way to look at it would be that a clinical visit is a snapshot and families know the whole movie. And so we’re asking—it’s our continuous ask—for our collateral information, the information that we know about our loved one’s day-to-day functioning, that that be heard, documented and considered as critical to treatment, diagnosis, even discharge planning from the hospital.

The families are really the voice of risk, and our input can save lives. We’re talking very serious stuff like psychosis, suicide. That information needs to be conveyed.

What is NSMoms doing to help caregivers advocate for their loved ones more effectively?

We’ve been working very hard—we’re a small little group—over this year to educate caregivers to speak up clearly and professionally. We’re trying to provide information so that caregivers can provide the critical context for safety and care decisions, and our message is always about collaboration.

Ultimately, the health-care team and family caregivers are looking for the same thing: to keep their loved ones safe and healthy. The more we can work together, particularly with serious mental illness because there are lifelong needs, the better.

We have created, on our website nsmoms.ca—and when you go into the main page you’ll see the Toolkit button—a series of five pamphlets to date, including things like basics for caregivers, ER navigation, legal obligations of doctors in working with families. There’s another pamphlet for communicating with social workers and another one to navigate the provincial crisis team.

We created those knowing that nothing like this exists in the system, and certainly for all of us when we were trying to navigate all this, we found that to be a deficit, and it continues to be not available for caregivers.

We have asked Nova Scotia Health to display these pamphlets in Nova Scotia Health facilities where they can be very useful, so caregivers can really have them on the spot. You can download them from our website, but we really want them to be out there displayed in the facilities where mental health care is. To date, Nova Scotia Health has not agreed to display our pamphlets.

Did they give you any reasoning as to why not?

It’s pending. I think we are expected to hear sometime very soon, hopefully.

Also in the Toolkit, we have created doctor letters and ER letters that give families the language to advocate in an extremely confusing system. So there are sample letters and fillable templates for each scenario. We’ve created scenarios that match real-life situations happening every day in Nova Scotia in doctors’ offices, in the ER or in acute care units.

The letters are to help keep the system to account. That’s part of our goal for the things that we’re working on right now—we want the culture to change. So this would help the practices change. It’s not really about targeting individual doctors; it’s about system accountability.

If you go into the Toolkit again, you’ll see doctors’ letters on our website: requesting attention, capacity assessment and urgent safety concerns for doctors; and then in the ER, where there are care issues happening every day, lack of communication with caregivers, inappropriate discharge from the ER and inappropriate discharge from inpatient care.

Nancy, what do you know so far about any training of this new implementation—not implementation, but this amendment—when it became law? What do you know about the training side of things?

We have had meetings with government, many meetings and discussions around the importance of the practice and culture change that needs to go along with this change in the legislation, and the government does seem to be committed to doing that.

What we’ve heard so far is that the first training session for the 2,300—they have 2,300 clinicians working within mental health and addictions—and the first training session to start doing that retraining is February 2027. What we’ve been told is it could take up to three to five years to actually train all of the clinicians that work within mental health and addictions. We feel this is very unacceptable. It’s a change that should have taken place many, many years ago.

I think people know how important it is and, again, staff shortages aren’t allowing them to have staff attend training and still cover off the operational work. Taking three to five years is going to mean a lot of escalated illness, a lot of prolonged illness and death, and it’s unacceptable.

I do have to say again, we raise this often, but there is an allocation of spending of resources and budget within the mental health and addiction system that is way too low. The World Health Organization advises that 10 to 12 percent of the overall health budget should be put to mental health and addictions, and year after year our government continues to allocate less than five percent.

So, you know, we know that doctors and clinicians are working in very overburdened and under-resourced systems, and this is causing, again, a lot of people unwell and unsafe in our communities not getting the help they need. The prolonged training is another example of this.

Cyndi, one of the things that you and Nancy and everyone involved with NSMoms call attention to is system accountability. Building off of what Nancy was just saying, what does that mean in terms of serious situations that result from lack of care?

To us as Nova Scotia moms and as caregivers, accountability means that failures are documented, received and corrected. There are very dangerous gaps, and Nancy was alluding to the same thing: this revolving ER door, which everybody knows in serious mental illness continues to happen.

The patient becomes unwell, goes to the emergency room, deteriorates, is discharged too quickly, goes back into the community, and then back again. Really, if caregivers were allowed to be more involved in the care and to have a better understanding of how to care for these serious mental illnesses, ultimately it would save health-care dollars.

And more importantly, it would save the health of a whole family unit, because this does a real number on the family and also the person who really needs the care.

Cyndi, Nancy, thank you very much for your time today.

Thank you very much.

Nancy Saunders, founding member of NSMoms and co-facilitator of a suicide loss support group. Cyndi Corbett is a caregiver facilitator of a family support group.