‘It can be done here’
Daughter says outof-province surgery unnecessary for elderly father
Three days of worry started on May 7 for Dana Sellars and her family.
The Carbonear woman had opted to stay in Newfoundland while her parents travelled to Halifax for her father’s surgery, one Sellars believes should have been performed in St. John’s.
John Gillingham has had Parkinson’s for 17 years — a disorder of the nervous system that causes tremors, rigidity, stiffness and other ailments. He received a Deep Brain Stimulation (DBS) system five years ago, which sends electrical impulses to his brain and helps curb the tremors of some Parkinson’s patients.
The closest location to install this system through surgery is Halifax, where Gillingham last had the DBS implanted.
Every five years the battery in the DBS system must be replaced. The surgery takes about 15 minutes to complete and costs between $10,000 and $20,000, but neurologists with Eastern Health have only performed the procedure for emergency situations. Since July 2013, six patients have received an emergency battery replacement in Newfoundland and Labrador. There have been 23 patients since 2012-13 that travelled out of province for DBS-related surgeries.
Sellars is not happy that her elderly parents had to fly to Halifax for three days for the 15minute surgery.
“It can be done here,” she told The Compass last week. “And neither of my parents are well enough to travel.”
Sellar’s mother Glenys has some health issues that can be challenging while travelling as well.
Gillingham knew he was going to have to get the battery changed before June. That was the five-year deadline. Sellars reached out to the Department of Health and Community Services to find a way to avoid travelling out of province. She explained her father’s situation, and requested to have Eastern Health authorize the neurologist in the province with experience changing the battery pack to perform the surgery, and not just for her father, but for all affected.
A short response from Health Minister Steve Kent’s ministerial liaison said, “Your correspondence will be reviewed for appropriate action.” So Sellars waited.
“I was impressed with how quickly they got back to me first,” she explained, but there was a long wait for a follow up. She sent another message in mid-April and wrote again the day
her parents arrived in Halifax. She was still waiting for a response when she spoke with The Compass last Wednesday. Kent replied to requests for an interview immediately, and was unaware she did not receive a response. Sellars received an apologetic email for the oversight. The health minister does appear to be open to reassessing that arrangement.
Department looking into it
“The battery replacement can be done here, and is apparently relatively simple to do, and we are working with Eastern Health to sort this out quickly,” he explained in an email to The Compass. “The Sellars family raises a legitimate concern, and we are acting on it.”
Sellars feels it’s too little too late. Her parents spent some $1,500 out of pocket for travel, accommodations and food while in Halifax. But it wasn’t the money that was the problem.
“My parents are just completely exhausted,” she said. “Because of the timing, they inserted a brand new battery pack, it’s like going from a flip phone to an iPhone. But, if it had have been in St. John’s, the time would have been there to sit with mom and dad and explain, ‘Now this is the difference, this is how this one is going to work compared to the other one.’ They had a five-minute session in Halifax.”
The situation created stress and anxiety for the family, as their father and mother were forced to wait alone in the waiting room in Halifax.
Since it’s too late for the Gillinghams, Sellars wants to see a change soon so no one else will have to travel for a simple procedure. And Kent agrees.
“I want this procedure to be performed here as soon as possible,” Kent said. “We don’t need to send people out of province for this.”
Glenys (left) and John Gillingham just returned from a three-day trip to Halifax so John could have a 15-minute surgery that is not covered in this province.