New Brunswick patients and families at the centre of a mysterious neurological syndrome are still waiting for the results of a clinical review, which were supposed to be released early this year.
The unknown syndrome was initially connected to a cluster of 48 people between early 2020 and May 2021.
At that time, patients and their families were told it was a mystery - potentially something no one had discovered before. But in October 2021, the province said autopsies of those who died pointed to other causes.
A clinical review committee made up of six neurologists was then tasked to review each patient’s clinical history and diagnosis.
New Brunswick Health Minister Dorothy Shephard had said the review would be released “in the early new year.”
“The clock has not stopped on our work,” said Shephard, during a news conference on Oct. 27, 2021. “The oversight committee has committed to completing its work as expeditiously as possible and I look forward to receiving it and sharing it with the families and the public in the early new year.”
In a letter dated Jan. 31 to Shephard and officials at Horizon and Vitalité Health Network, a group of patients and their families stated: “We demand that you share the exact date that this report will be released to the public, including the date for the press briefing to discuss it. We have waited long enough.”
Siblings Jill and Tim Beatty were one of the families listed in the letter. They lost their father in 2019, and say the wait for answers has been extremely difficult.
“The longer we go, and the more that we have sort of a dismissal tone looking for the information that dispels the idea instead of going in pursuit of inquiry. Like, what happened? The further and further we get from actual answers,” said Tim Beatty.
Steve Ellis, who’s waiting for answers on behalf of his father, says some are being informed they are no longer part of the cluster.
“We need to know now what’s in this report,” he said.
In a statement Thursday, a spokesperson for the Department of Health said the committee is still working on its investigation.
“Due to complex nature of collecting all of the detailed medical information required for its review and its due diligence in carefully reviewing individual patient information, the work of the Oversight Committee continues at this time. Letters to the physicians and the families are still in the process of being sent out,” they stated.
The department did not commit to a timeline as to when the findings will be released.
“We want this for other people; we don’t want other families going through what we’ve gone through,” said Jill Beatty. “We don’t want this for anyone.”
