Daughter says Eastern Health waited too long to disclose the situation and won’t give her any answers
Susan Williams says she has been stymied for answers from the government and Eastern Health over an outbreak of hepatitis B at a personal care home, where she says her mother became infected. — Photo by Barb Sweet/The Telegram
Eastern Health uncovered a hepatitis B outbreak at a personal care home last year that was likely caused by poor infection control practices, The Telegram has learned.
The calamity has shattered a St. John’s family.
Dorothy Manning became a chronic carrier of hepatitis B because of the outbreak, said her daughter, Susan Williams.
The Public Health Agency of Canada describes hepatitis B as an infection of the liver 100 times more infectious than HIV.
It can be prevented by a vaccine.
Manning, now 65, was moved from one personal care home to another private institution to be in the same facility with her husband, Cyril. They did not share a room, but Williams said her father became infected four months ago — she thinks he likely borrowed a razor or contracted the virus through saliva from a kiss or shared drink.
Williams said although health officials knew about Manning’s diagnosis by December 2009, her family did not find out until January 2010.
Williams believes her mother contracted hepatitis B while living at a now-defunct St. John’s personal care home, but that it wasn’t discovered until she had moved to the other facility in Mount Pearl.
Williams said she only found out because her father called her crying one evening and said he had been given a needle and was told by a nurse that his wife “had something bad in her stomach she would never get rid of.”
“And that was an 82-year-old man’s version of what went down,” Williams said.
Her mother’s hepatitis B diagnosis was confirmed for Williams in a late-January meeting with Dr. David Allison, medical officer of health, she said.
Allison cannot discuss patients or confirm their details, but told The Telegram the outbreak at the personal care home was discovered in November 2009.
Since she learned of her mother’s virus, Williams said, she has been unable to find out through health officials who is liable, whether the personal care home had insurance, and other details.
She said no one has ever taken responsibility or said they were sorry.
Williams said her mother fell down roughly five years ago and, after a stay in the hospital, was placed at the St. John’s personal care home by the social work team at St. Clare’s Mercy Hospital.
“Nobody knows the hours (spent) just sitting watching her. And for nobody to take acceptance or responsibility is killing me. Killing me,” she said, breaking into tears during in a interview alongside her husband Terry at their St. John’s apartment.
According to an Eastern Health document obtained by The Telegram, the health authority as of January identified six hepatitis B virus infections among staff and residents at the St. John’s personal care home that occurred sometime between November 2008 and November 2009 for most of them.
“Our observations have led us to conclude that this outbreak was most likely due to poor infection control practices surrounding the use of blood glucose testing equipment. Notably, transmission was not confined to diabetics,” the document states.
It did not name the personal care home, but it noted that Eastern Health would be checking to ensure that infection control measures are closely adhered to in personal care homes, including the proper disposal of needles and lancets, and making sure that each resident has his or her own supplies and that there is not any reuse between them.
The St. John’s home has since closed for reasons unrelated to the incident, Eastern Health said, and its former operator is deceased.
According to Eastern Health, the facility had liability insurance
In the document obtained by The Telegram, Eastern Health said communicable disease control staff and personal care home monitors would continue to follow the staff and residents exposed to hepatitis B and has offered immunization to other care providers, roommates and close family members.
Williams and her husband have both tested negative in blood tests administered every three months. They’ve also been vaccinated.
But she’s aghast that the information was withheld from the family until they pursued it after getting the phone call from Williams’ father.
Williams said in the roughly two months between the time Eastern Health said it informed her mother she had hepatitis B and when Williams learned of the outbreak, she continued caring for her mother as she always did, including shaving her legs.
“My hands are always broke open. Who’s any more close than I am? I was never informed of this,” she said.
“I found out in January 2010 and still can’t find answers. I still can’t get anywhere, still can’t get any acceptance, still can’t get any acknowledgement.”
When she asked for a further report on the outbreak, she was told to pay $5 and file an access request with the provincial government, she said.
Williams added that Eastern Health would not disclose who the insurance provider was for the personal care home.
“I shouldn’t have to wait 30 days,” she said. “How could this happen? … It’s all a coverup. It’s all a mess. The health is gone out of our health system.”
Now Williams wonders about the credibility of Eastern Health’s monitoring of personal care homes and the following of policies and safety procedures, and whether staff at the homes are properly trained.
She said her mother had her own clearly labelled diabetic supplies that came every month from the pharmacy and there was no excuse for her to have been infected.
(“Eastern Health) sanctioned this place. They deemed this place safe. … And what I did, basically, is sign her death warrant. If she was to die tonight or die when she is 99, I will always wonder, because this should never have happened,” Williams said.
“They will never know what all this caused, all because someone was too stupid or negligent to follow procedure.”
She blames Eastern Health and the provincial government for not properly monitoring personal care homes.
And I don’t think there is any one group at fault. Everybody had a piece of the pie and everybody failed it,” Williams said.
Terry Williams, faced with his wife’s frustration and anguish, wrote then premier Danny Williams in early November, copying the letter to other departments and to Eastern Health. The family was told the matter had been referred to Health Minister Jerome Kennedy.
This week, the Williams received a letter from Kennedy, providing Internet links for standards of care in long-term care homes.
Kennedy noted that Eastern Health is directly responsible for administrating and delivering health services in the region, and said his office wants to see a copy of a response to the family by CEO Vickie Kaminski.
“I am confident that a thorough review will be completed by Eastern Health and any necessary action taken,” Kennedy wrote.
Through his spokeswoman, he declined an interview with The Telegram.
Williams said if her mother was told about the hepatitis B infection in December 2009, she wouldn’t have been able to process the information, as she has had several mini-strokes.
Williams said her father, a retired St. John’s city worker, is in the second stage of dementia and she has the same conversation with him every night in which he asks what is wrong with his wife.
This week, after being at St. Clare’s since late September waiting for a nursing home bed because her level-of-care requirement has increased, Manning was finally placed in a St. John’s nursing home.
Williams wonders what precautions will be taken for other residents and staff there and whether her mother will be properly taken care of.
As she talks about her fears, Williams breaks down again and her husband reassures her she has tried to open every door she can.
She’s back working at her retail job after taking most of the past year off on employment insurance due to the stress of the ordeal and the need to tend to her mother. She relays the heartbreaking story of her mother asking to come home with them to the modest apartment they share with their son.
Williams said her mother told her, “I’ll sleep on the couch. I’ll be a good girl,” and that breaks her heart.
Williams said she’s been told her mother needs a new drug to manage her hepatitis B levels, but it has side-effects and she fears her mother might not be able to communicate them. She said it’s a drug that may require special approval.
“With all this bureaucratic red tape I’m going through right now, what happens when she reaches the next level? What happens when her liver has finally developed cancer?” Williams asks.
“And she’s really sick. And I got to take time off work. … Who is paying for all that?”
She said she’s going to have to deal with it all again with her father now that he has the virus.
“I’ve always been the one to make everything right for her and Dad, and now I can’t,” she sobs.
She said she’s consulted lawyers but was told there was no monetary value in her case and she didn’t have the financial backing to pursue it.
“I was never in this for monetary gain, but now I’m angry,” she said.