Pandemic safety procedures leave some mental health patients feeling abandoned

Handling the COVID-19 pandemic has been tumultuous for all of us, involving quick adaptation and frequent discomfort. But for those managing a chronic condition like a mental illness, the pandemic created a fog of uncertainty and new barriers to care that exasperated some issues, despite the best efforts of local workers to mitigate them.

The state deemed mental health services essential, so they could continue under lockdown, but they weren’t specific about what preventative measures providers should or could take.

Copper Country Mental Health, the needs-based, government-supported provider of mental health care in the Keweenaw Area, received some basic guidance from the Michigan Department of Health and Human Services (MDHHS), which they combined with guidance from the CDC and the Michigan Occupational Safety and Health Administration (MIOSHA).

“So we had input from a lot of different agencies and organizations, and then we met as like a safety committee, and that involved our nurses, and we developed the protocols,” CCMH Director Cari Raboin said.

Month by month through the pandemic, the guidance they received changed, and so the committee met repeatedly to update their procedures.

“So it was a moving target,” Raboin said. “It was moving and changing all the time.”

The CCMH staff were also concerned because some studies being released showed that severe mental health disorders could be an increased risk factor for mortality in patients with COVID-19. They felt that the increased risk to the people they’re meant to serve called for a higher level of caution.

Therapy was moved to phone or video interaction. Injected medications were offered in the parking lot by masked and gowned nurses. Even emergency room mental evaluations for people brought — sometimes involuntarily — to the hospital were done over the phone in coordination with emergency room staff and family when available.

“[CCMH] staff would talk with them [the hospitalized] on the phone, too,” Raboin said. “So we got a lot of input, more than just the phone assessment.”

Assertive Community Treatment, which is regular one-on-one activity between a patient-consumer and a CCMH worker and often involves things like making and attending appointments or doing personal shopping, was able to continue with some extra precautions.

But any kind of group social activity had to be ended and didn’t resume for a long time. In the best of cases, these activities moved to a virtual format.

Matt and Nola Olson said that was hard on their adult daughter, who also lost the job shredding paper she had been working a couple of hours per week because of lockdown.

Their daughter doesn’t like cameras and so virtual options don’t suit her.

“When everything shut down and isolation came, you could really see it,” said Nola, their daughter’s full-time caretaker.

This in turn meant Nola had less time for her own work and personal care, which were already limited by the lack of trained, available respite care.

“I had to keep her busy,” Nola said.

Nola felt that the isolation was causing their daughter’s symptoms of schizophrenia to worsen. They felt the first therapist they worked with remotely didn’t understand and wasn’t listening to their concerns.

“We have to deal with it, they don’t,” Matt said. “They’re on the other end of the phone.”

The Olsons were able to change therapists to one they felt took more care to compensate for the shortcomings of telehealth, but still feel their daughter would be better served by in-person therapy sessions.

Raboin said there are pros and cons to using teletherapy. Not being able to read physical cues and body language is definitely a drawback, but she said they got a significant amount of positive feedback from consumers about teletherapy, as high as 70% approval in a survey they sent out. Those who have trouble keeping in-person appointments because of transportation issues, or symptoms of their illness that make going out in public more difficult, found it particularly helpful.

“We hope to be able to continue to provide that as an option,” Raboin said.

It’s currently allowed under special federal and state rules, but may not be in the future. Until CCMH hears from agencies that are above them in authority, they can’t make any long-term plans, either. And not having a plan to offer their patient-consumers keeps everyone apprehensive.

The Olsons said that not knowing what the plan was, and not having any direct contact with therapists or other professionals has left them feeling out of the loop and abandoned.

Raboin said communicating was “definitely” a challenge. They sent out letters, updated their website, and attempted other outreach with each update.

“But the best way we found to communicate with people is one-on-one,” Raboin said.

The most reliable way they found to communicate information was to have someone’s case manager or primary clinician talk with a patient-consumer or their guardian directly about new information or changes.

Whereas transportation to appointments is a barrier to care for some, access to broadband internet or wifi is a barrier for others.

CCMH provided iPads for some consumers who didn’t have a good device for video chatting and bought calling cards for others who had limited minutes on their phones.

The Olsons have to rely on dial-up internet or cell-based internet because of the rural location of their home and their financial constraints, which is another thing that keeps video conferencing from being a good option for their daughter, so they mainly rely on audio-only phone therapy.

“As far as mental health was concerned, it’s all telephone,” Matt said. “And it’s hard to gauge things off a telephone… you’re missing all of the visual cues.”

The Olsons said that the double-standard between physical and mental health was part of what made it so frustrating.

“What burnt me up was the hospital was open the whole time,” Matt said. “Granted you had masks and you had to check for fevers and you know, but if you broke your arm you knew you could go to the emergency room and have your arm dealt with.”

But for mental health issues, there was nowhere open to them.

The Olsons are told their daughter has an illness of the brain and it should be treated as a physical ailment, “but we weren’t treated that way.”