Medical Bureaucrats at BC Children’s Hospital & PHSA Botch Multimillion Dollar Donation For Desperately Needed BC Adult & Children ADHD Clinic

The CEO of Deeley Harley Davidson Canada, Don James has been trying to give a 3 million dollar donation for a desperately needed children and adult BC ADHD clinic. For 3 years.

Incompetent BC medical bureaucrats have ignored him. Repeatedly.

Update

Vancouver Sun deleted the story, so did the internet archive, I’ve posted it at the bottom of this post.

This is disgraceful.

Pamela Fayerman, the Vancouver Sun’s medical reporter wrote an excellent investigative story on this. Check out her website Medicine Matters and her Twitter and  Facebook page.

But unfortunately, her 1675 word investigative story complete with a staff photographer photograph that looks like it’s written for the print edition is posted instead in her blog, not the print edition.

Why? Was it spiked? Blog spiked? It’s a great story. Did it offend the powers that be at the Vancouver Sun? Their connected friends or organizations? Vancouver Sun managing editor Harold Munro apparently made the decision.

Please ask Harold why an excellent story like this is not in the print edition? Here’s his email address hmunro@vancouversun.com ADHD gets ignored or stigmatized in BC far too much.

Don James, CEO of Deeley Harley Davidson Canada explains why he offered the generous donation for a much needed BC adult and children’s ADHD clinic.

We’ve had some experience with ADHD in our family,” he said. “My wife Ruth, and I, wanted to ensure that children treated there aren’t suddenly dropped as patients when they transition to adulthood,” he said, noting that in 2009, a B.C. Medical Association report drew attention to the need for more services for ADHD patients of all ages.

I wish there were more people like Don James in BC.

James approached various mental health experts at the Provincial Health Services Authority (PHSA), the BC Mental Health Foundation as well as experts at BC Children’s Hospital. Although there was initial interest, no one got back to him with a plan or promise to use the money, he said.

This is disgraceful.

As an Adult ADHD coach who runs the Vancouver Adult ADD Support group, I get people emailing me on a daily basis, asking for people who can diagnose ADHD in children and especially in adults. I’ve heard far too many horror stories by people who suffered because they didn’t get diagnosed and treated for ADHD.

Many BCers wait months on wait lists to get diagnosed for ADHD IF they can find someone who is actually knows ADHD well enough to give a proper diagnosis. Most medical professionals in BC have no training in ADHD. UBC medical students only get one hour of training on ADHD.

Don James says

If they weren’t interested in our donation, they should have had more respect by referring us elsewhere because we weren’t talking about an insignificant amount of money. We weren’t given the straight goods.

People were protecting their turf and not thinking about all the patients out there who aren’t getting proper treatment. We were handled in an incompetent, unprofessional manner

So adults and children with ADHD in BC who are severely lacking in resources for diagnosis and treatment HAD someone out there willing to fund the services they so desperately needed but didn’t get them because incompetent medical bureaucrats decided fighting ego turf wars was more important than helping ADHD patients?

Or did they just have contempt for people with ADHD? I know people who work in the mental health field who’ve went public at work with their ADHD and experienced discrimination by doctors and psychiatrists because of it.

Dr. Jana Davidson, a psychiatrist and head of mental health at BC Children’s and Women’s Hospital and Health Centre, admitted that, as one of those tasked with handling the pledge, she dropped the ball and left James and his wife dangling for three years.

“I feel badly. These were incredibly generous, well-meaning people, intent on trying to improve services for those living with the negative effects of ADHD. “The responsibility fell on my shoulders. I should have done a better job, especially in the formal communication with them,” Davidson said.

The BC Liberal govt closed down the only public adult ADHD clinic in BC 5 years ago after having a politically embarrassing 12-14 month wait list for an entire year. Still closed. I asked then NDP health critic Adrian Dix‘s (now BC NDP leader) office if they’d do something about it, but just got a lot of empty promises and nothing in the end.

Why hasn’t health minister Mike De Jong done something about this? What will he do about this badly botched multimillion dollar donation? Email mike.dejong.mla@leg.bc.ca Phone: 250 953-3547

I asked BC Premier Christy Clark at her town hall meeting 8 months ago if she would reopen the BC Adult ADHD clinic the BC Liberals closed. Her answer is on my blog post with the audio, she said “I’m Absolutely Committed To Working With You On It”. CKNW and CBC did a story on it. But nothing’s happened.

“James said he made several overtures to experts, including Leslie Arnold, president of BC Mental Health and Addictions Services, a PHSA (Provincial Health Services Authority) agency that has a mandate for ADHD services based at Children’s Hospital.

When James first approached BC Children’s in 2008, the hospital was about to stop accepting adult patients because waiting lists were too long. Even after dropping adult patients, waiting lists for pediatric patients — and their parents who may be taught new parenting skills —are still long. At present, new patients must wait five months to be seen. ”

James said he’s incredulous he’s only recently learned more about the dithering on his pledge. And he’s especially disturbed he discovered about it through a Vancouver Sun journalist (this writer), not from hospital officials.

“No one ever told us they couldn’t use our money or why. We offered money and they simply ignored us.”

Dr. Margaret Weiss head of the BC ADHD clinic, and world renowned authority on ADHD resigned in part over this. She’s worked there for 20 years. This is a big loss.

The Don James donation debacle played a role in the resignation from BC Children’s Hospital of Dr. Margaret Weiss, one of the world’s leading authorities on ADHD. Weiss had practised psychiatry at the hospital for 20 years and had led the ADHD program for about the last half of them until she left a few months ago. The McGill and Harvard University-educated psychiatrist is now seeing ADHD patients and conducting research in her North Shore home office.

She’s one of the world’s most prolific authors of ADHD studies published in prestigious medical journals. She also advises health systems around the world how to provide ADHD treatment programs. Weiss said the diversion of the James donation, coupled with the BCCH policy to stop accepting patients after their 19th birthday, was devastating news to her and her patients. It was one of the reasons she resigned, she said

If you ever wanted to do something about getting back an adult ADHD clinic in BC now’s the time.

“Someone else should do it” rarely really happens in real life. Many non ADHD people don’t even think ADHD is real let alone care about us.

People with ADHD don’t get services in part because far too often many in the media, the govt, and the medical bureaucrats don’t think it’s real, or a real problem. If we want services, we need to tell them why we need them.

Here are a few ways you can help:

Please read the story and pass it on to people you know who might be interested in it and facebook/twitter, consider commenting on Pamela’s blog post or writing a letter to the editor, if you do, ask them why the article is not in the print edition of the Vancouver Sun.

Please call your MLA and demand they reopen the BC adult ADHD clinic and ask them to do an inquiry on why a much needed $3 million dollar donation for BC adult and children’s ADHD clinic got ignored for 3 years.

Here’s how to find your MLA’s contact info

Also please consider politely (cursing gets deleted) explaining to these people why adults and children with ADHD need a BC adult and children clinic. If they don’t think we need resources they won’t give us it. Lots of other groups want the limited resources.

If the PHSA Provincial Health Services Authority won’t help adults and children with ADHD, they should give the resources to VCH Vancouver Coastal Health Authority to do so

1. Lynda Cranston, President and CEO of the PHSA. Provincial Health Services Authority lcranston@phsa.ca

2. Lorna Howes, Director of Mental Health Services for VCH. Vancouver Coastal Health Authority  lorna.howes@vch.ca

3. Mike De Jong. Minister of Health. Email mike.dejong.mla@leg.bc.ca Phone: 250 953-3547

4. Mike Farnworth BC NDP’s Health critic. Email  Mike.Farnworth.MLA@leg.bc.ca
Phone: 250 387-3655

Other ideas?

Sadly the Vancouver Sun article is deleted from their website and no longer available in the Internet Archive either, so I’m posting it below

“Harley-Davidson CEO makes multimillion dollar pledge for ADHD treatment: the exclusive, controversial back story is here

http://blogs.vancouversun.com/2012/01/21/harley-davidson-ceo-makes-multimillion-dollar-pledge-for-adhd-treatment-the-exclusive-controversial-back-story-is-here/

January 21, 2012. 10:32 am • Section: Medicine Matters, STAFF

BY Pamela Fayerman
Vancouver Sun

For three years, a Canadian business leader tried to donate more than $3 million to BC Children’s Hospital. But he was frustrated in his bid to give his money away because of a donation debacle.
Don James, CEO of Deeley Harley-Davidson Canada, eventually took his multimillion-dollar pledge to Lions Gate Hospital, where it has now been enthusiastically and gratefully accepted.

The James estate in North Saanich,

The motorcycle mogul, who owns a magnificant estate on Vancouver Island where he and his wife breed Arabian horses, told me he wanted to donate money towards Childrens’ attention deficit hyperactivity disorder (ADHD) program.

At the time, Children’s accepted both children and adults for treatment and the James family had benefitted from the high quality care.

“We’ve had some experience with ADHD in our family,” he said. “My wife Ruth, and I, wanted to ensure that children treated there aren’t suddenly dropped as patients when they transition to adulthood,” he said, noting that in 2009, a B.C. Medical Association report drew attention to the need for more services for ADHD patients of all ages.

James approached various mental health experts at the Provincial Health Services Authority (PHSA), the BC Mental Health Foundation as well as experts at BC Children’s.

Although there was initial interest, no one got back to him with a plan or promise to use the money, he said.

Dr. Jana Davidson, a psychiatrist and head of mental health at BC Children’s and Women’s Hospital and Health Centre, admitted that, as one of those tasked with handling the pledge, she dropped the ball and left James and his wife dangling for three years.

“I feel badly. These were incredibly generous, well-meaning people, intent on trying to improve services for those living with the negative effects of ADHD.

“The responsibility fell on my shoulders. I should have done a better job, especially in the formal communication with them,” Davidson said.

James said he made several overtures to experts, including Leslie Arnold, president of BC Mental Health and Addictions Services, a PHSA agency that has a mandate for ADHD services based at Children’s Hospital.

When James first approached BC Children’s in 2008, the hospital was about to stop accepting adult patients because waiting lists were too long. Even after dropping adult patients, waiting lists for pediatric patients — and their parents who may be taught new parenting skills —  are still long. At present, new patients must wait five months to be seen.

Davidson said James wanted to “ramp up” a program that was the victim of finite resources. She was loath to accept money for a program that might run out of resources again. But no one ever told James that his gift wouldn’t be accepted, nor did anyone refer him to other medical centres or even the hospital foundation, which employs fund development pros who know how to finesse donations and properly handle donors.

James said his experience is instructive for others wanting to give money to health causes.

“If they weren’t interested in our donation, they should have had more respect by referring us elsewhere because we weren’t talking about an insignificant amount of money.

We weren’t given the straight goods.

People were protecting their turf and not thinking about all the patients out there who aren’t getting proper treatment.

“We were handled in an incompetent, unprofessional manner,” he said.

At one point, Premier Christy Clark was even involved in the matter, albeit indirectly. At the time, a year ago, she was campaigning for the Liberal leadership. On a radio show, she commented on the need for more services for adult ADHD patients. 

James said right after that, he got a call from a BC Children’s hospital representative asking if he was still willing to make the pledge. He said he was, but once again there was “no further feedback, no thanks, or anything.”

In frustration, the James family decided to see if their money could be used by another hospital. A friend of theirs connected them to the enthusiastic president of the Lions Gate Hospital Foundation, Judy Savage.

“This wonderful couple were captivated with our plans for our new Hope Centre and right off the bat, we had a meeting with the medical people,” Savage said, referring to psychiatry leaders.

The first million dollars of the James donation will be used towards the construction of the Hope Centre, an inpatient and outpatient mental health facility expected to open by the end of next year.

“We already do some work in the ADHD area,” said Savage. “If we weren’t, and couldn’t use their gift, then I would make it clear to them who does that and refer them elsewhere. Our job in philanthropy is to find out what is close to donors’ hearts. We don’t ram our vision down their throats and if it requires directing donors elsewhere, then we do that, because we can’t operate in silos in health care philanthropy.”

Leslie Arnold, president of BC Mental Health and Addictions, said she’s both disappointed and encouraged by the way things have played out.

“I’m disappointed we weren’t able to serve the James family. But for whomever receives their donation, it’s good news for mental health.”

James said he’s incredulous he’s only recently learned more about the dithering on his pledge.

And he’s especially disturbed he discovered about it through a Vancouver Sun journalist (this writer), not from hospital officials.

“No one ever told us they couldn’t use our money or why.

We offered money and they simply ignored us.”

Stephen Forgacs, spokesman for the BC Children’s Hospital Foundation, which was never involved in the negotiations, said it’s unfortunate his agency wasn’t asked by anyone to participate in the process because when big donors are willing to donate money, “we bend over backwards for them.

“We work with them to find the solution that works for them and works for the organization [hospital].”

James said he never went to the foundation because he presumed his pledge would be handled appropriately by the mental health experts. He now realizes he shouldn’t have made such an assumption.

Forgacs concedes that even when hospital foundations are involved, there are sometimes hitches, as in this case, where a program serving adult ADHD patients was discontinued around the same time the pledge for the donation came in. That meant the donors’ wishes were not in alignment with existing programs and services.

“It’s still very unlikely the foundation would ever turn away donors but it’s challenging when it’s being designated to programs that are not sustainable,” said Forgacs.

The Don James donation debacle played a role in the resignation from BC Children’s Hospital of Dr. Margaret Weiss, one of the world’s leading authorities on ADHD.

Weiss had practised psychiatry at the hospital for 20 years and had led the ADHD program for about the last half of them until she left a few months ago.

The McGill and Harvard University-educated psychiatrist is now seeing ADHD patients and conducting research in her North Shore home office.

She’s one of the world’s most prolific authors of ADHD studies published in prestigious medical journals.

She also advises health systems around the world how to provide ADHD treatment programs.

Weiss said the diversion of the James donation, coupled with the BCCH policy to stop accepting patients after their 19th birthday, was devastating news to her and her patients.

It was one of the reasons she resigned, she said.

“The teen to adult transition years are when kids with ADHD are at their most vulnerable stage of life.

ADHD raises the risk of learning problems, education failures, crime, car accidents, recreational accidents, brain injuries, alcohol and drug addiction, unintended pregnancies and on and on,” she said.

ADHD is often diagnosed in childhood.

But symptoms and impairments endure through the adult years.

A life cycle clinic recognizes that ADHD is often a life long condition so the model proposed by Don and Ruth James, in which patients of all ages are treated, is exciting to Weiss. 

She is, in fact, hoping she’s considered as head of the new clinic on the North Shore.

Since ADHD may be inheritable, children diagnosed with it often have a parent with it as well.

Weiss said that’s why it makes sense to have a centre where families can receive treatment.

Most countries with sophisticated health systems already do that, but not Canada, she said.

Treatment for ADHD involves medications (usually stimulants) and behavioural counselling. Parents of ADHD kids are often offered parenting skills training.

Dr. Derryck Smith, the former head of psychiatry at BCCH, who now works there only one day a week while seeing patients in his private clinic on other days, said it’s a “real pity” Children’s Hospital has lost not only Weiss but also the funding opportunity for a life-cycle clinic.

“What the province desperately needs, in my opinion, is a clinic that will assess and treat patients of all ages, in a multidisciplinary, research-focused, academic setting. 

This is important for teaching the next generation of doctors, who currently get almost no training in ADHD, esepcially in adults,” Smith said.

Dr. Lance Patrick, head of psychiatry at Lions Gate Hospital, said the concept of a “life cycle” ADHD clinic is an excellent idea “because ADHD doesn’t just go away as kids become adults.”

He’s thrilled that Lions Gate is the beneficiary of the James donation.

Plans are now being drafted to establish the new clinic on the North Shore. Using funds pledged from the James family, the clinic would ideally consolidate all the Vancouver Coastal Health (VCH) services for ADHD into one location.

Lions Gate Hospital is making good progress on the James family pledge.  

Patrick said a draft proposal of the new clinic was recently presented to his VCH regional counterparts. 

There was agreement in principle to proceed with a business plan. But no one yet knows where the clinic will be located or when it will open, Patrick said.”