Canada: Chronic disease expert at pioneer BC women's clinic leaves abruptly

[Kati]

I hope you have a speedy and full recovery. Take care.

Thanks @alex3619 to be honest the little cancer is the least of my problems

 

[Daffodil]

holy sh---t. that is MADNESS. INSANITY

 

[NK17]

@Kati your is the personal story that should not exist, nowhere in a civilized country!!!

I really feel for you, I agree that we need to manifest and come out of our prisons, I just don't know how ...

I also understand completely what you mean by saying that the little cancer is the least of your problems.

You are a strong and courageous woman and we need you to be alive and kicking to fight for all PWME.

 

[Kati]

@NK17 thank you so much for these kind words and support.

i have received a lot of grunts for saying what I said and talking about my experience. In fact someone even told me that if the clinic ever closed, then it would be because of me.

All the while, said clinic did not even attempt to make things better, they just continued on their path of naturopath, self-help approach and let's not care about the physical part, let's just address the psycho-social part and contain them patients.

if patients are not being given a voice, as you know social media is just right there and will get a voice one way or another.

Patients with Me and FM deserve much much more than what's offered in Vancouver.

 

[Firestormm]

Parting words – and hospital criticism – as Dr. Alison Bested leaves B.C., returns to Ontario

July 22, 2014. 2:40 pm

BY PAMELA FAYERMAN

Her silence over her controversial departure from BC Women’s Hospital has been deafening.

Alas, it didn’t last forever as Dr. Alison Bested, the former medical director of the Complex Chronic Disease Program has sent me a statement she calls a “public response;” it is posted below.

Her stipulation is that I publish it in its entirety; I have acquiesced to this request...

Read more: http://blogs.vancouversun.com/2014/...-alison-bested-leaves-b-c-returns-to-ontario/

Statement from Dr. Alison Bested

"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.

Dr. Alison Bested in her former office at BC Women’s Health Hospital and Health Centre. Photo: Arlen Redekop/PNG​

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"

 

[TigerLilea]

And more to add, I hear from patients seen by Dr Patrick as part of the study that is currently going on have been treated much differently than the clinic. (As in treated much, much better). This should be food for thoughts. Patients who needed consultations with other specialsits were given a referral.

The clinic should have had the ressources to send patients to other medical specialties faster, in my case, dermatology and rheumatology. They did none of that. i was seen at the clinic in July (with the open blisters foot) and saw the dermatologist at the end of November and he randomly asked to see my back after he saw the melanoma family history and found the basal cell ca right away. So the dr at the clinic, what was he looking at when auscultting my lungs with the door wide open and no shirt on?

A CFS/FM/Lyme clinic probably wasn't the right place to be seen for open blisters on your foot, but should have been taken care of by your GP. You don't go to a specialist in one field expecting to get a referral to a specialist in another field. That's the GPs job.

 

[Kati]

@TigerLilea, that's your opinion. i got mine.
i will not discuss this online. The care I have received at the clinic has been appalling and completely unacceptable.

 

[Little Bluestem]

Since half of the CCDP doctors resigned with her, she could bring them to the U.S. and open their own Complex Chronic Disease Clinic.