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

[Aileen]

@Kati I'm so sorry to hear you were treated so badly. Also sorry to learn of your other health problems. I hope you get the proper care very soon.

 

[Kati]

Thank you @Aileen. i am traumatized by the health care i have received at the Complex Chronic Disease Clinic. People who think that the clinic as it is is a good thing, I think not. I do not wish my care to anybody else.

Moreover patients should not be forced into alternative medicine like naturopath. Dr B has made weird comments publicly like "you are what you eat"- no you're not. We need science application, we need testing and team approach should include different medical specialties.

 

[lizteva]

Kati, it sounds like you had a really bad experience and I'm sorry for that. I don't underestimate how hard that must have been on you...and it also sounds like someone majorly screwed up by missing some things. It's just that I also know people who have had very positive experiences at the clinic and feel your experience is not the whole picture.

I agree that the clinic doesn't have any real medicine to offer us at this point but who does? I think the clinic helps people who have absolutely no income because they can't get a diagnosis; I think it can help people who aren't aware of self-management techniques to help stabilize their symptoms and get out of the push/crash cycle; we actually don't have a lot of support groups here for ME/CFS and any support people can get is good; and I think the clinic can help educate other doctors who don't understand the first thing about the illness. I also think that if Dr. Bested had been allowed to stay, she could have worked towards some changes to MSP billing to allow GPs more time with patients (like they have in Ontario) and started a systematic and scientifically acceptable research program that could have drawn researchers here to use our properly gathered and preserved samples. (None of us want to go through the XMRV roller coaster again only to realize in the end that samples are tainted and we're back to the drawing board).

I myself didn't even sign up to be a patient because I knew the clinic couldn't offer more than I've already learned, but I won't badmouth Dr. Bested for only working with the science that is out there and not coming up with treatments or a cure herself. And her ousting shows the ignorance within the system that she is working against--she would have been ousted much earlier, I think, if she'd started suggesting experimental treatments. I think if you keep expecting our medical system to get to where it should be overnight, you will continue to be disappointed.

Is what the clinic had to offer enough? Probably not, but that's the state of things and the place to fight that is with the provincial and federal government, not with doctors who are making what difference they can in an underfunded, uneducated system. And Dr. Bested took a stand and left when that system went too far and was going to compromise patient care.

Was hiring Dr. Bested a good step forward? I think yes

Are we better off now that she's gone? I have a hard time seeing how you'd say 'yes' to that 'cause I can guarantee you that she's not going to be replaced with anyone who is more progressive or understands our illness or our community better

 

[Aileen]

@Kati It always upsets me even more than usual when a nurse, or other health professional, is treated this way by doctors. It's like they are insulting you twice. First giving you poor treatment as a patient and secondly by dismissing your qualifications.

 

[Kati]

@Liz, i believe you were present at Dr Patrick's presentation. He's surrounded himself by many, many scientists and specialsits such as infectious disease, rheumatology, mitochondria and more. This is what is needed for ME and FM. Science. Working from bench to bedside.

If you take the HIV model, give all the support groups, CBT and special diets you want it will not fix viral loads and CD-4 levels. Medicine will. dr bested chose to hire a chinese medicine dr, a naturopath and have a CBT program for patients. OMG, who would even suspect she is a hematologist/pathologist?

And as an aside, if you listen to the Pain BC Radio show, she warns a patient about checking out where her sources were for believing a patient visit at the clinic would last 4 hours. i truly feel she was thinking of my when she said "check your sources". But then I went and checked out what the website said. And I took a screen shot of it. OMG, it's not Kati or other patients that said that, it was her own website.

i emailed her the same day and a change was done without changing the date update at the bottom and she never replied to me. I am not the enemy. i am a patient that needs care, medical care.

And i cannot comment about other people's experience at the clinic, since I do not have permission that is why i am only talking about my own.

 

[Valentijn]

And yes, right now, the "treatment" available is just self-management and pacing, etc. but really what else is there out there that is proven in evidence based research?

How about antivirals for chronically reactivated viruses? Or antibiotics for chronic bacterial infections? Those treatments are very much evidence based, with or without the ME/CFS diagnosis being attached to the patient.

"There's nothing better available" does not excuse half-assed treatment, and hasn't done so for a very long time. It simply isn't true.

 

[WillowJ]

I don't agree with what you are saying. I've had CFS for over 23 years and CBT/GET has never been mentioned to me before by any of my doctors that I have seen here in Metro Vancouver. I think that this "cheap treatment" is much more common in Europe.

I was offered CBT/similar on at least two occasions in my area.

Once for sleep problems (my doctor had asked for an actual sleep study and did not think CBT/sleep hygeine would help, but this is what my HMO at that time had a policy of doing first for all sleep patients)

and once for coping/CFS (no idea if this would have been actual coping CBT or not, as I didn't go, not strong enough at that point to deal if it wasn't, and at that point I needed medical treatment urgently--which was the reason I was having "trouble coping").

 

[Kati]

Patients with ME and FM are so neglected over here that simple problems are put on the fault of ME or FM and therefore is not considered important. I was not asking or expecting to receive anti-virals or other 'off-label' treatments at the clinic. I wanted them to take a look at the whole picture- That curious rash on my foot, which blistered after a course of steroid cream- it was likely shingles. We all know that shingles, and viral reactivation is very common in our patient group. The least I could have gotten there was a confirmation of that.

These days, it seems like rheumatologists don't even want to see patients with ME and or FM. That's so unreal. Even if they don't want to take us as patients, diseases overlap, and every once in a while, ME patients will go on to develop a rheumatologic condition. This clinic is a great opportunity to engage with the rheumatologists, However the clinic went the other way and hired a naturopath and a chinese medicine dr and has written down in my consultation that I need to meditate and see a naturopath. How good does that sound to a rheumatologist, you think?

 

[Daffodil]

I am afraid the only way we are going to get a proper clinic like the one Dr. Bested was attempting to provide is if it is private. Something along the lines of what KDM has going. From what patients have described here on PR, it sounds like he has managed to combine thorough care with time for patients with efficiency. Perhaps a private clinic run by Dr. Bested, with help from KDM to get it set up would be good for us.

Perhaps some things could be funded through the provincial healthcare system to reduce the cost to patients. For example, lab tests that are usually paid for under the provincial plan. Scans if necessary. Heart testing. They have a very specific list of what they pay a doctor for and the price. Even if they paid the usual amount for a normal doctor visit, at least that amount could be deducted from the price charged to patients?

A government-funded clinic will not work because the healthcare system revolves around the needs people had when it was originally established. The typical problems then were broken bones, diseases that most children today are vaccinated against, pregnancy and baby checks. It didn't take a 3 hour appointment to diagnose mumps. People did not usually live into their 80's and 90's. The current situation is vastly different. The whole system needs a complete overhaul.

hi aileen. private clinics are not allowed in Canada.

socialized medicine is great in theory but now I see the serious drawbacks.

Belgium has socialized medicine too but KDM has managed to provide real help....not sure how that can be done here, since anyone who doesn't tow the line loses their license.

 

[Aileen]

hi aileen. private clinics are not allowed in Canada.

socialized medicine is great in theory but now I see the serious drawbacks.

Belgium has socialized medicine too but KDM has managed to provide real help....not sure how that can be done here, since anyone who doesn't tow the line loses their license.

Exactly. Our health care system can't keep going the way it is. Here in Ontario, health care makes up around half the provincial budget!! And the Ont College of Physicians and Surgeons (old boys club) controls everything and rules with an iron fist.

I think we are going to have to look at introducing some types of private clinics. Perhaps for certain patient groups (like us) that do not fit well into the current systems. Much of the routine testing is done by private firms with govt picking up the cost for certain tests. Some scans are similar. The new hospital here in town is a public/private consortium (the building only).

So maybe clinics, with specific goals, to help specific underserved groups? Similar type of payment structure. Government pays $xx.xx for a specific consultation, test, etc and anything above agreed-upon amounts would be the patient's responsibility. CPSO keeps their nose out. Not exactly "equal" but it isn't now either. Better something than nothing?

 

[Kati]

i disagree big time here.

Health care is free in Canada. you have cancer, your care and drugs are covered, and they are expensive drugs. Care for a chemo treatment may well go above 100 grands. HIV/AIDs treatment drugs are 100-% covered. The quadriplegic who got that way because he(she) drove drunk, free care.

There are a whole lot of us sick now because the government looked the other way. While billions is spent in HIV research and while a full inpatient HIV ward closed down because it is not needed (in Vancouver, announced this week). It's time that our governments pay attention. And it's time that patients make a whole lot of noise.

Edit to add: the harper government just committed to 3billions for maternal/child health for the next few years. There is money out there. It's just that they choose to spend in on everything but this disease.

 

[Undisclosed]

There are private clinics in Ontario.

 

[TigerLilea]

The clinic should have had the ressources to send patients to other medical specialties faster, in my case, dermatology and rheumatology.

There is a severe shortage of dermatologists in BC, and apparently most of the ones still practicing are close to, or past, retirement age. So no one in this province is getting in to see a dermatologist any time soon without being on a waiting list.

 

[TigerLilea]

i disagree big time here.

Health care is free in Canada.

Health care in Canada is NOT free. We pay taxes and here in BC we pay monthly premiums for our insurance.

 

[Kati]

Health care in Canada is NOT free. We pay taxes and here in BC we pay monthly premiums for our insurance.

However @TigerLilea someone who has never paid thier insurance premiums but landed with cancer will still be able to receive services, and if they can't afford paying for the MSP premiums, that will be waived for them.

The essence of our socialized health care system is "health care for all"

 

[Kati]

There is a severe shortage of dermatologists in BC, and apparently most of the ones still practicing are close to, or past, retirement age. So no one in this province is getting in to see a dermatologist any time soon without being on a waiting list.

Yep, it took me 5 months to see one from the open blistered foot condition. and when i phoned the derm in mid April regarding my recurrent basal cell ca, i was given an appointment for June 3rd. Horrible.

Other medical specialties sufffering from gross shortage/ backlog are rheumatology and orthopedic surgery.

 

[Daffodil]

There are private clinics in Ontario.

hi kina. what kind of private clinics? even if MD's choose to practice privately here, they still are not allowed to charge more than the rate that is set by health Canada/OHIP....and they are still investigated by the CPSO if they deviate from standard treatments

in Canada, there is a 2 - 5 year wait list to see a spinal surgeon. people are actually going paralyzed because they cannot get in to see one. my mother's surgeon screwed up her back surgery. she was suicidal from the pain. her surgeon refused to do anything more for her, even though the radiologists said her nerves were still being compressed....and once you have a doctor perform surgery on you here, good luck getting anyone else to even look at you.

and don't even talk about suing a doctor here....it will get you nowhere.

I know there is a lot of good about socialized medicine, but Canada's system is really messed up and needs an overhaul. I have no idea why no one is doing anything.

 

[Daffodil]

Yep, it took me 5 months to see one from the open blistered foot condition. and when i phoned the derm in mid April regarding my recurrent basal cell ca, i was given an appointment for June 3rd. Horrible.

Other medical specialties sufffering from gross shortage/ backlog are rheumatology and orthopedic surgery.

wait a min.....you had to wait TWO MONTHS for skin cancer????

 

[Kati]

Yes @Daffodil. it was diagnosed and treated back in November, and in March/April it came back, it is now over 2cm (close to 2 fingers wide) but can't really measure because of its location on my back. i am going in for it on Tuesday.

Many people think I'm a loud mouth and hindering the building of the clinic. What has happened to me has been unbelievably horrible and unacceptable, that is why i am speaking up.

 

[alex3619]

Yes @Daffodil. it was diagnosed and treated back in November, and in March/April it came back, it is now over 2cm (close to 2 fingers wide) but can't really measure because of its location on my back. i am going in for it on Tuesday.

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