Decade-long wait for surgery 'ruining her life,' Alberta woman says

An Alberta woman says her life is wasting away after a series of missed communications, long waitsand gaps in the system have left her waiting more than a decade for surgery to relieve the severe pain in her back and neck.

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"It's such a waste of my life, when I know it could be fixed. It's so frustrating. I sit around and do nothing and watch life pass me by," CathieBurnuptold Go Public. "So the last 10 years are pretty much a waste of my life, waiting for surgery that could have been done years ago."

Burnup is from Strome, Alta., a small village southeast of Edmonton. She has a history of congenital scoliosis and osteoarthritis.

The 56-year-old had to quit her job 10 years ago and now spends her days lying on the couch wearing a neck brace. She takes high doses of fentanyl for the pain as she waits for surgery to fuse two disks in her neck and a joint in her pelvis.

"Life is awful. It's chronic pain, so it's lonely, because you really don't fit in with society, you can't interact with people so you kind of become a hermit," she said.

Successful surgeries in the US

When Burnup wasa teenager, Alberta doctors sent herto the Twin Cities Spine Center in Minneapolis for several surgeries in the early 1970s.

After Burnup was injured in a car accident in 1982, Alberta Health agreed to pay for another surgery in Minneapolis when doctors recommended she return to the same hospital that had performed her earlier procedures.

In 2005, Burnup's condition started to deteriorate and doctors told her she needed more surgery.

Go Public put together a timeline based on doctors' letters and referrals that shows big gaps, long waits and a failure to communicate within the health system.

• December 2005: Burnup's doctor gets a response back from an Alberta neurosurgeon saying he is too busy to see Burnup, suggesting she be referred to another doctor or back to the doctor who originally performed her surgeryin Minneapolis.
• 2006-10: Burnup is bounced from doctor to doctor and department to department within Alberta Health waiting to hear if the surgery will be done in either in Alberta, B.C. or Minneapolis.
• March 2010: Alberta Health finally agrees to pay for Burnup's trip toMinneapolis,but only for a consultation.
• April 2010:Burnupsees Dr. JosephPerrain Minneapolis who confirms the need for surgery and suggests the option of gettinga Canadian surgeontodo it.
• Late 2010: Burnup is told by Alberta Health she won't be going for surgery in the U.S., but wouldinstead be sent to the VancouverSpine Surgery Institute at Vancouver General Hospital.
• January 2011:A letter is sent to Burnup saying she is approved for travel funding for an appointment with Vancouver surgeons.
• Early 2013:Burnup calls the Vancouver Spine Surgery Instituteto ask about an appointment and is told she is on the waitlist and would be notified when an appointment became available.
• March 2013: The Vancouver Spine Surgery Institutetries to contact Burnup for an appointment time, but finds her number had been disconnected and her doctor did not have a new number. However, the number the institute called was not Burnup's general practitionerbut one of the surgeons in Minneapolis. Burnup is unaware of the miscommunication.
• After three failed attempts to contact Burnup, the VancouverSpine Surgery Institute puts her file into what it calls the "incomplete cabinet."

After Go Public's inquiries, patient services manager Brendan Tompkins said the Vancouver Spine Surgery Institute would pull Burnup's file and restart the process. The wait for a consultation is now a year to 18 months, and because so much time has passed, Burnup needs to update her medical file with a new MRI or CT scan.

Go Public also provided the institute with the correct contact information for Burnup's doctor.

Health ministry promises answers

Go Public also put Burnup's case to Alberta's Ministry of Health and to the province's health advocate. Both said they wouldn't go into specifics "out of respect for patient confidentiality."

"We would like to help the patient resolve this situation. The minister's office has reached out to this individual to hear her story, and we want to ensure that she, like all Albertans, can access the care that she needs," wroteministry spokeswomanCarolyn Zieglerin an email.

After CBC's inquiries, Burnup got two calls,one from the Ministry of Health promising to get to the bottom of what happened, andanother call from Alberta Health offering to help Burnup get an appointment with an Alberta neurosurgeon.

Many patients lost in health-care limbo

The father of an Alberta man who died weeks after being diagnosed with testicular cancer says stories of patients being lost in a kind of health-care limbo are common.

Dave Price said his son diedafter being failed multiple times by the health-care system. Greg Price, 31, died on May 19, 2012, three days after surgery to remove a cancerous testicle.

The Health Quality Council of Alberta released a review of Price's experience with the system. The report found breaks in continuity of care, lost information and poor communication between health-care providers is common.

Price saidthere have been improvements since his son died, but there are still big gaps.

"That is the reality of the way the system operates," Price said, adding thatpatients need to be assertive to make sure all the doctors involved in their care are collaborating and sharing information.

"There are way too many stories where there are gaps. It might be inadvertent on the caregiver's end, buton the patient's end it is critical," he said.

The Health Quality Council of Alberta and Price are recommending an online "patient portal,"a way patients and doctors can track the process to get treatment.

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