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Kaiser patients felt trapped in a ‘circle of horror:’ How they fought for mental health care

Sacramento Bee - 9/15/2022

Nam Nguyen cratered after mental health clinicians went on strike at Kaiser Permanente in mid-August and the company abruptly canceled both her support group and her weekly therapy sessions.

Two days after the strike began, Nguyen landed in an emergency room where she was placed on an involuntary psychiatric hold out of concerns that she was a danger to herself. She had faced “a circle of horror,” she said, as she tried to get the care she needed.

“I was already off on short-term disability because I was struggling a lot with depression and trauma and PTSD,” said Nguyen of Benicia. “Then both the individual sessions and the (intensive outpatient program) transition group were canceled.”

The strike by 2,000 mental health providers at Kaiser provoked a crisis for Nguyen, but she and several other patients said they’ve long faced obstacles accessing mental health treatment through the giant network.

One example are the ruefully named “ghost lists” that Kaiser provides patients seeking out-of-network therapists. Kaiser patients said they struggled to find anyone on these lists who are accepting new patients or who still work with the health network or who have the right credentials to treat them. Often, patients say, they leave messages that are never answered.

Kaiser clinicians said these complaints are central to the strike. They are holding out for improved working conditions that they say would allow Kaiser to recruit and retain enough therapists to slash the months-long waits that patients now endure to get in-network treatment.

Increasing patient complaints also have drawn the scrutiny of the California Department of Managed Health Care, which announced in May that it had launched a surprise investigation into whether Kaiser was providing its members with timely access to behavioral health services.

Kaiser Permanente executive Patricia Rodriguez told The Bee that the health network sees mental health care as just as important as physical health care.

“We hear the frustration and concern in the comments you have shared with us, and they are a powerful reminder that we need to continue to improve and advance our care and service,” said Rodriguez, the senior vice president of clinical services at Kaiser. “We don’t want anyone to have these kinds of experiences.”

At the same time, Rodriguez noted: “We know from patient surveys — our own and those by independent organizations — that the broad majority of patients who receive mental health care through Kaiser Permanente are pleased with the care they receive.”

Rodriguez said the company’s ratings for behavioral and mental health care were among the highest in the state on the 2021-22 report card from the California Office of the Patient Advocate. In that report, 94% of Kaiser members said they felt that their care team respected what they had to say, and the company received a 5-star rating, the highest in the state.

Nguyen said that, even though she works at Kaiser as a health and wellness coach, she has struggled to get the system to work on her behalf. She elected to share her name and story with The Bee’s readers despite fears that she would face reprisals at work.

She ended up filing a grievance with Kaiser and then appealing to the state oversight agency to compel the health insurer to connect her with an out-of-network clinician who had the trauma training that her Kaiser therapist had recommended.

She wondered aloud: What would have happened if she didn’t have a college education or hadn’t known she could file a complaint with the health plan or request an independent review from the state?

Patients say Kaiser doctors know about roadblocks

Nguyen and other Kaiser members said that even the company’s providers and staff know that patients face an uphill battle if they want to see a therapist or specialist.

In early 2021, while California was operating under an extended COVID-19 stay-at-home order, Sacramento resident Maya Polon told her primary-care doctor that she was struggling with stress and grief and wanted a referral to see a mental health clinician.

Her doctor told her that the chance of her ever getting a session with a therapist was slim. His prescription: Keep a daily journal.

“He just said, ‘You’re not going to be able to get through to anyone, but just do this gratitude journal. Write down five things you’re grateful for every day, and I think you’ll feel better,’” said Polon, a communications strategist who works with labor unions, climate activists and other organizations around the state. ”Honestly, at that point, like being told to do a gratitude journal was like, if you are drowning, and someone just yells like, ‘I’m sorry you’re drowning.’”

The doctor also told her that she didn’t need a physician referral to seek mental health care. She could just call Kaiser’s mental health line. She did and got an intake appointment. That call, however, led to a process that she called “overwhelmingly defeating.”

“You basically are forced to prove that you are not mentally stable to them,” Polon said. “I left the (intake) appointment sobbing, after having to list off every single reason that I felt that I was deserving of therapy.”

After intake, Polon was given the option of five meetings where she could discuss her symptoms. A friend who had experience with the Kaiser system recommended she do it.

“It wasn’t talk therapy. You tell them a symptom, and they offer you solutions,” she said. “That’s the extent of it. So you say, ‘When I feel anxious, I have trouble breathing.’ And they say, ‘OK, here are five types of breathing exercises you can try.”’

After those sessions, she was given a diagnosis. She had a panic disorder and an anxiety disorder. Kaiser recommended medication and weekly talk therapy.

Finding providers is a ‘nightmare’

Another nightmare loomed around the corner, though, Polon said, when Kaiser sent her a “ghost list.” She met with one disappointment after another while making calls.

Finally, the staff at one practice called her back and told her they had a therapist who could see her but that they would need a different referral code from Kaiser before their practice could be reimbursed. The office manager tried over and over to get it corrected, but her efforts failed, so Polon had the manager sit in on her calls with Kaiser. That didn’t work either.

Polon met with her out-of-network therapist for more than eight months before Kaiser finally provided the right referral and began paying. In the interim, the bill climbed to $12,000, and after each weekly session, Polon’s therapist would apologetically explain that she was required to tell her how much she owed, even though they expected Kaiser would eventually cover it.

Historically, mental health services has been separated from the rest of health care, requiring people to jump through hoops to get to it, and that needs to change in order to get the right care to the right people, said Lynn Bufka, associate chief of practice transformation at the American Psychological Association.

Ideally, Bufka said, an intake process would ascertain the nature of the patient’s problem, identify the level of severity, determine whether the system can provide the right care for the patient, and if not, go outside the system to find it. Bufka said, if she ruled the health care world, she would assign patients a primary-care mental health clinician who would keep tabs on them and make referrals.

While searching for a provider, Nguyen said she got three “ghost lists” and hit many brick walls over several months. Finally, one therapist gave her the name of a provider with the right training, but that clinician had no contract with Kaiser and Nguyen couldn’t get approved to see her.

All the while, Nguyen said, she was receiving letters from Kaiser saying that she was “getting the care you need” and urging her to return to her therapist in Walnut Creek.

Nguyen recalled feeling confused, invalidated, exhausted and manipulated. She considered attempting suicide.

“It was affecting my sleep,” Nguyen said. “It was affecting my mood. I work with a lot of patients on a daily basis. ... I wasn’t able to do my job well. I was barely getting by just being a parent, so it affected me a lot because of the stress and the worry.”

Could California agency really help?

Out of desperation, Nguyen sought an independent medical review on July 26 from the California Department of Managed Health Care, asking regulators to force Kaiser to offer a trauma specialist who could provide the services that her Kaiser therapist had recommended.

An attorney from the agency sent a letter to Nguyen on Aug. 17, two days after the Kaiser strike began. By that time, Nguyen’s group and individual therapy sessions had been canceled.

She had been waiting since the day the strike began to get instructions on how to start a partial hospitalization program. A provider at Kaiser’s crisis line said that the program’s mix of individual and group therapy, psycho-education, skills building practice, and evaluations would be just the right level of care for her. A mother of two, Nguyen would be able to return home in the evenings and overnight to care for her children.

On Aug. 17, though, Nguyen hadn’t heard from anyone, so she called Kaiser back to see what they could offer. She was awaiting a response when she opened the letter from the state attorney.

She summarized the letter as saying: “Hey, so we looked at your thing (the independent medical review) about the trauma therapy. Kaiser says they’ve referred you to this person, and so they’ve fulfilled their contract. All good.’”

Nguyen was aghast: Kaiser had never checked to see whether she had connected with the therapist.

“I never spoke to this person, I called them three times. They’ve never returned my call,” Nguyen told her attorney in a voice message. She called the therapist, appealing to her to confirm whether she was available so she could share the response with Kaiser and the state agency.

Nguyen was so agitated that, when the Kaiser representative called her back, that she was issued an ultimatum: Go to the emergency room within three hours, or prepare for a welfare check by the police.

Nguyen reasoned: “Maybe this is the process, and they need to assess me and then maybe that will get me to the partial hospitalization program faster.”

Once at the emergency room, though, a therapist put her on a 72-hour hold, even though Nguyen felt partial hospitalization would be a better solution. She had to arrange care for her two boys, and as she tried to recover, she was also sending emails from her phone to let the state agency know they wouldn’t be able to reach her for a while and why.

The agency’s attorney agreed to re-open her case and to speak with her the following week.

Why doors finally opened

Nguyen said she’s now on the way to getting the help she needs because the Department of Managed Health Care intervened. Nguyen was released from the involuntary psychiatric hold on a Saturday, Aug. 20, and called the attorney assigned to her case the following Monday.

“I actually told (him) to drop the case because it was too hard for me, too stressful, that the fight was not worth it and I needed to focus on taking care of my mental health, and that Kaiser told me the care I needed wasn’t available,” Nguyen said.

But the lawyer wouldn’t hear of dropping it.

Nguyen said he asked her: ‘What level of care do you feel you need?”

She responded: “’Partial hospitalization? But Kaiser says they don’t have that.’”

“That’s a plan problem,” the attorney said. “That’s not your problem.”

The words stuck with Nguyen. What has happened since that phone call seems a miracle to her.

The attorney called her daily, and so did Kaiser’s representatives. To assist in her current crisis, Kaiser placed her in an intensive outpatient program but has plans to move her into a partial hospitalization program with a new contractor in mid-September.

Soon after, a Kaiser representative called to let her know they had approved her seeing an out-of-network trauma specialist and asked whether she had someone in mind. She provided the name of the therapist she’d been given during her long, winding search for care.

“Kaiser has the capability to support patients if they want to or are made to,” Nguyen said. “On my own I had been struggling for care from June through August. With the DMHC, they resolved both issues in a week.”

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