Former Medical Director of the Complex Chronic Diseases Program Breaks Silence Over Controversial Departure, Says “Patients are not widgets on an assembly line”

by lmatthews on August 4, 2014

alison bested lyme disease doctor canada bc ccdpDr. Alison Bested has become something of a heroic figure to Canadians with Lyme disease and other chronic health issues that remain underserved by traditional medical care.

Back in 2013 Dr. Bested oversaw the opening of BC Women’s Hospital’s Complex Chronic Diseases Program which promised to take on complicated cases including patients with Lyme disease, chronic fatigue syndrome, fibromyalgia and undiagnosed conditions that had caused years of suffering but which remained a mystery. Bested left the clinic abruptly in May, 2014, but has stayed silent about her departure until now.


Rumours circulated that over the last year Dr. Bested saw just one patient a week at the clinic while the waiting list grew to over 1400 patients. Bested did not respond to criticism over this low volume of patients until releasing a public statement in late July where she explains how she came to the tough decision to leave the clinic she had ardently hoped would provide much-needed care for an often overlooked population of patients.

Bested explains in the statement how establishing the clinic meant recruiting and training fellow physicians, writing contracts and patient forms, getting the clinic’s website up and running and even adapting software for use in managing patient care. In addition to the patients in her care, Bested also oversaw the management of other physicians’ patients, mentoring these doctors to offer the same standard of care in these complex cases for which she has become well known.

Was Bested Paid to See Just One Patient a Week at Lyme Clinic?

The implication that Bested received a generous salary for just seeing one patient a week is distinctly unfair and many of her patients have rallied to her defence, noting that the two to three hour consultations that they had with Bested constituted the most worthwhile medical care they have received often in years of suffering from an undiagnosed condition potentially related to Lyme disease. These patients were shocked to hear of their new physician’s quick departure and are, along with those on the growing wait-list, now afraid that they’ll never get to the bottom of their health issues and feel better.


Dr. Alison Bested’s statement is copied below in its entirety:

As the former medical director of the Complex Chronic Disease Program (CCDP), I am responding to public comments made.

I was excited when PHSA hired me. The Complex Chronic Diseases Program was one offering great promise. Regrettably, for the many British Columbians suffering chronic debilitating illnesses and pain, this promise was not kept.

PHSA Press Release December 2011: “BC Women’s Hospital will be home to a new clinic that will address complex diseases such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Lyme disease and Fibromyalgia, which often lead to disability for British Columbians.

British Columbia is taking a leading role within Canada with the clinic and its associated research program. The establishment of the clinic is made possible with the direct investment of $2 million from the BC Ministry of Health.”

Health Canada’s 2010 Community Health Survey found 100,000 BC people had these conditions. For 9 months, I worked administratively creating the program from scratch: recruiting doctors, writing contracts and patient forms, adapting software for the 5 year study of CCDP patients, writing the website etc.

On July 29, 2013 I started seeing patients. On patient days, I saw my own patients and mentored all of the new doctors and staff and saw and reviewed patients with them as they came on staff. These were not counted as my patients but it was my responsibility to train staff in the CCDP. We developed complex diagnostic patient workups and individualized multi-disciplinary treatment plans. I connected with international professionals to develop the best possible clinical program. As the physicians became experienced with these patients, I increased my patient days to 4 days a week and decreased my administration to 1 day a week. I worked most evenings and weekends to finish the work.

The wait list grew to 1,500. St. Paul’s Hospital Pain Program’s had the same wait list when it opened. The Pain Program’s wait list decreased after satellite pain clinics were created throughout BC. This was also the CCDP’s plan. Medical residents were to begin training at the CCDP this fall.

I agreed to lead the Program based on the 2011 Proposal written for the Ministry of Health that described the model of patient care used by international experts.


Pressure to see more patients resulted in administrative directives to reduce the time doctors spent with patients. The LEAN program was applied at BC Women’s in a heavy-handed manner resulting in changing the model of care. I, in agreement with the doctors, didn’t support this change that greatly reduced time doctors spent with patients because it compromised patient care in these vulnerable patients. My opinion, about the best model of care for patients was not respected and I felt disrespected in the process. BC Women’s Hospital terminated my appointment as Medical Director, but expected me to continue to see patients. I could not support the change in the model of care and I resigned as a clinician. Half of the CCDP doctors also resigned.

Patients are not widgets on an assembly line that can be sped up to push them through faster. CCDP patients have 6 or more diagnoses, many medications, disabling fatigue, difficulty thinking and remembering and severe pain. Women, men and children are often disabled, can’t work, attend school or even a doctor’s appointment. Patients deserve comprehensive care specific to their medical needs. It was unreasonable to think that 1 new program with 2 full-time equivalents of doctors could begin to catch up in this underserviced area in 7 months of clinical operation.

Patients asked me about the best location for the CCDP. In my opinion, patients would be better served if this Program was located in a medical office with Faculty of Medicine UBC affiliation and Ministry of Health funding to allow more flexibility and support research. This had been done previously to meet particular needs for other underserviced patients.

Research dollars promised were never present for finding better clinical tests or treatments in the CCDP. BC attacked HIV with determination 30 years ago when there were no tests or treatments for HIV. The situation dramatically improved for HIV patients today, but not so for these complicated medical patients.

Patients, write your MLA, tell them about your experience with medical care and insist on better tests and treatment for your medical condition.

It was my pleasure to work on behalf of the patients in British Columbia. You are the reason that I came. You will always be in my prayers.

NEVER GIVE UP!

Sincerely,

Alison C. Bested MD FRCPC


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