Horizon clinic treating mystery brain disease patients still doesn't have social worker, psychologist

When Horizon Health Network announced a specialized clinic aimed at treating people who've been told they have a mystery brain disease, it promised to help support patients and their families navigate the health-care system.

But nearly three months since it opened, the clinic doesn't yet have a social worker or psychologist working there and is still looking to hire a full-time registered nurse, according to information provided by Horizon.

The clinic, called the Special Neurodegenerative Disorder Clinic but often known as the Mind Clinic, is run out of the Moncton Hospital with the aim of "providing earlier diagnosis of neurodegenerative disorders affecting adults at any age."

Initially, Horizon said the clinic would focus on assessing patients suspected of having a mystery neurological disease.

So far, according to the government website, 48 New Brunswickers are part of a potential cluster of people who have experienced symptoms such as memory problems, visual hallucinations, balance issues and muscle spasms, among others. At least six people have died.

The patients range in age from 18 to 85, with most living in the Acadian Peninsula and Moncton areas when they were referred by a health care provider.

'This is now affecting my father's care'

Steve Ellis would like to see the recruitment process expedited at the Mind Clinic.

His father, 63-year-old Roger Ellis, was confirmed to have the mystery neurological illness last month.

Ellis and his father had a followup appointment last week with neurologist Dr. Alier Marrero.

The appointment was held at the Dr. Georges-L.-Dumont University Hospital Centre instead of the Mind Clinic, and Ellis said Marrero told him that was because the Mind Clinic isn't fully operational and needs more staff.

"He's doing the best he can with the 48 cases he already has, and he's getting an influx of referrals," Ellis said.

"He's very busy and as a result, he said that he can only see my father in person every three months. But if he had proper staffing, he could see my dad monthly. So this is now affecting my father's care and it's at no fault of Dr. Marrero. It's completely at the fault of the government."

More in-person appointments with Marrero would make it easier for his father to ask questions and have physical examinations.

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"I don't know what it's going to take to move the dial, but that clinic needs to be staffed and soon because people are deteriorating," Ellis said.

Ellis, who lives in Nova Scotia, was recently able to see his father in person for the first time since the Atlantic bubble closed last fall.

"Currently, he is going downhill," Ellis said.

"His mobility has really changed in the last few months.He's walking slower. His muscles are more rigid. His cognition has decreased."

Clinic won't have psychologist until November

While he doesn't feel his symptoms are as severe as what some other patients have experienced, Luc LeBlanc would also like to see more staff at the Mind Clinic. He has also been told he has the mystery brain disease.

The 41-year-old man from Dieppe said he called the clinic numerous times about some new symptoms he was having, before finally going to the emergency room. After five weeks, LeBlanc said he still has not heard back and does not have any upcoming appointments with the clinic.

"Six people have died and it seems like it's not a priority or something," LeBlanc said.

Neither Ellis nor LeBlanc say they have had the opportunity to see a social worker through the Mind Clinic.

No one from Horizon was made available for aninterview.

In an emailed statement, Dr. douard Hendriks, Horizon's vice-president of medical, academic and research affairs,said the clinic is operational and has a team of three doctors, who see patients "in addition to fulfilling their regular duties."

• Mystery neurological disease prompts Horizon to launch special clinic

The clinic has also hired a part-time administrative support employee and "secured the services" of a research co-ordinator and an occupational therapist to help with patient assessments.

But the clinic won't have a social worker until August and a clinical psychologist until November, both positions that were mentioned in the April press release.

"Despite the wider challenges around nursing recruitment, we are still working to fill the position of full-time registered nurse, however part-time nursing support has been secured on an interim basis," Hendriks said.

Clinic has 81 patients

Health Minister DorothyShephard said the department has given the Mind Clinic the funding it requested.

She said some staff working there are assigned temporarily while hiring is underway, something she said can be a lengthy process. She referred additional questions about that process to Horizon.

"It's definitely not the money side of it," the minister said in an interview.

"It would be either working through the processes of the hiring, because if there are positions that people have to leave elsewhere to come to a new position, there's always a collective bargaining process that's ingrained that they have to either backfill, or they have to be ready to let them leave that position."

• FULL COVERAGE: New Brunswick's mystery neurological illness

So far, the clinic has 81 patients, 76 of whom have been seen since the clinic opened in the spring,according to Horizon.

It's not clear how many of those patients have symptoms that have been associated with the mystery neurological illness. The province hasn't updated its case count since the end of April.

Last month, the province set up an oversight committee, co-chaired by Hendriks, that will oversee the investigation into the illness. Its mandate includes reviewing patients' files and the results of lengthy surveys Public Health is doing with patients and their families, all with the aim of figuring out what is causing patients' symptoms.

That committee won't be investigating any additional cases until they finish looking into the 48 that have already been identified, Shephard said, a process that's expected to take about six months.

"There will not be any more added to this until these 48 are reviewed, until we see the path that could then lead us to how future reviews could happen," the minister said.

In addition to not investigating additional cases, Public Health officials are also no longer revealing the locations of where cases have been detected.

When asked on Monday why the province won't release the same level of data it has been releasing for COVID-19 cases, Shephard said it's "because there's nothing definitive about any of it."

"Until these epidemiological surveys are completed and analyzed by the committee, we don't know what degree of validity a location has," she said.

"Or any of it. So we need to let them do their work on this first part."