Evidence of meeting #13 for Subcommittee on Neurological Disease in the 40th Parliament, 3rd Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was parkinson's.
A recording is available from Parliament.
9:35 a.m.
Conservative
9:35 a.m.
Associate Professor, Ottawa Hospital, University of Ottawa
I was just seeing if you were going to continue in French, in which case I would have to put in my earpiece, because my French is terrible.
9:35 a.m.
Conservative
9:35 a.m.
Voices
Oh, oh!
9:35 a.m.
Bloc
Luc Malo Bloc Verchères—Les Patriotes, QC
I simply wondered about the guidelines that will soon be published.
In particular, will we go into the point that Mr. Sherwood wanted to raise our awareness about, specifically that doctors are more interested in issues related to the collateral, subjective and emotional effects of the illness, in order to get a better handle on everything?
In her testimony, Ms. Squire said that, once the doctor told her that she had Parkinson's, he closed her file and put it away, leaving her to take in this news. That was 16 years ago and, maybe the way of giving the diagnosis has improved, but Mr. Sherwood seemed to say that there was still a lot of work to do in this area. Do the guidelines you've developed address this as well?
9:35 a.m.
Associate Professor, Ottawa Hospital, University of Ottawa
That is a good question. Actually, we broke it down into four different main sections. The first one is on communication. The whole section is on communication and how those in the health care system, whether it be physicians, physiotherapists, or nurses, should be communicating with individuals with Parkinson's, trying to give information that patients want to hear--but not too much information that they don't want to hear--and trying to make sure that when they do communicate things, they actually give the instructions, writing them down.
Those may be more basic recommendations, but still they're very important recommendations to give better care for individuals with Parkinson's. As I said, we have a whole section on communication.
9:40 a.m.
Bloc
Luc Malo Bloc Verchères—Les Patriotes, QC
Mr. Sherwood, would you like to continue your presentation? I know you still had things to tell us. Perhaps you would like to comment on what Dr. Grimes just said in response to the question you had, about whether this type of guide could be a helpful tool.
9:40 a.m.
As an Individual
Sorry, I didn't get the English translation initially.
By “problem” you're referring to what?
9:40 a.m.
Bloc
Luc Malo Bloc Verchères—Les Patriotes, QC
In fact, I wasn't speaking about a problem you have, but simply about this question you asked about support relating to the collateral, subjective and emotional effects of the illness on the patient, so that this would be better addressed by the health care team. Dr. Grimes said that there will be an entire chapter on this in the guidelines that are going to be published. Did his answer reassure you and respond to this need that you brought up?
9:40 a.m.
As an Individual
I would say in response that we have a whole lot of sub-specialists, a whole lot of areas of focus, and they're all neatly packaged in nice boxes. Parkinson's is one area of specialization, and there are a whole lot of others.
I strongly suggest that if the area of hospice palliative care were to integrate with Parkinson's in a more intentional way, the knowledge of both coming together would be very helpful, specifically for Parkinson's. Unfortunately, hospice palliative care has historically been somewhat of a fringe element of health care and has not integrated into the mainstream to the extent that it could. Given that there is a lot of knowledge that Parkinson's as a specialty has about Parkinson's specifically, the area of hospice palliative care that focuses on suffering, relieving suffering, and improving the quality of living and dying has a lot to say that could be very helpful. Just as Parkinson's could inform hospice palliative care, it could be the other way around.
I think it just requires communication between these areas of specialization, taking the experts who exist within both fields and seeing where there's overlap; seeing where there are opportunities for that information to be shared and for people to grow and learn together. I think integrating hospice palliative care professionals into the interdisciplinary teams would be one way, at a clinical level, to see that it happens.
Experientially, people learn better when they learn together and have the ability to mentor each other. You can come in and do an in-service and go through a wonderful education program, but walk out and do nothing to change your practice as a clinician. But when you have people working together, sharing knowledge, and saying, “What about this? What about that?”, then you have the ability to grow together.
I think that's where the opportunity really lies for these two areas to focus on.
9:40 a.m.
Conservative
The Chair Conservative Joy Smith
Thank you, Monsieur Malo.
What wise words those were, Mr. Sherwood. Thank you.
We'll now go to Ms. Leslie.
9:40 a.m.
NDP
Megan Leslie NDP Halifax, NS
Thank you, Madam Chair.
Thanks to all the witnesses for being here today. I've learned a lot.
I have two sets of questions, so I hope to get through both.
The first is about environmental factors. I know that there is an increased rate of Parkinson's--if that's the right terminology--for people who work with pesticides and herbicides. My uncle has Parkinson's and he was a groundskeeper, so he's very sadly one of those statistics.
Dr. Grimes, are environmental factors something you see with your patients? Is there any kind of tracking system, or is it just informal word-of-mouth: “Yes, a lot of the folks who come in my office had this kind of job, or worked in this kind of world”? What are you seeing with environmental factors?
9:45 a.m.
Associate Professor, Ottawa Hospital, University of Ottawa
Environmental factors for decades have been suspected of causing Parkinson's. Scientists have been looking at trying to identify specific environmental toxins we would potentially be exposed to that we can directly link to somebody's Parkinson's. That's proven to be extraordinarily difficult.
For anyone who comes into the clinic, yes, when you hear these stories.... I had a military personnel come to see me. His job for 40 years in the military was to spray pesticides into buildings to get rid of all the different bugs in the building. It really made you think that it's probably what might have triggered his Parkinson's. Is there a way to prove that? The answer is no.
Doing epidemiological studies to identify these links has proven to be extremely difficult. The biggest one, and I think there are still court cases in the United States, is manganese exposure among manganese miners. It looked as if manganese was causing Parkinson's in all of these individuals, and there were big lawsuits and everything. Then it turned out that maybe the epidemiology wasn't as exact as they thought, and maybe the link was not as strong as we thought.
For the individual person, it's very difficult. Yes, there is probably some environmental exposure that somebody's had that might have triggered the process or contributed to the process. But is that the sole cause? Probably not. It's turning into a very difficult thing to study.
9:45 a.m.
NDP
Megan Leslie NDP Halifax, NS
Thank you.
My next question is to all of the panellists.
We're legislators, so my great interest is in figuring out what we can do with legislation as it relates to Parkinson's. I'm wondering if you can tell me what your recommendations are. Would it be long-term care or home care?
Ms. Boosamra, you were talking about that. Would it be a pan-Canadian affordable drug strategy? Would it be banning certain chemicals that we have seen linked with Parkinson's?
I'll turn it over to each of you, if you have ideas about what we can do as legislators to assist people with Parkinson's, and caregivers as well.
9:45 a.m.
Conservative
The Chair Conservative Joy Smith
Can we please start with Ms. Squire? Then maybe each individual person could make a comment on that.
9:45 a.m.
As an Individual
I'm very encouraged by the new inroads being taken by the national brain strategy and collaborative organizations like that. Different units of interest are coming together and focusing on the brain, and organizations are sharing information.
As a person with Parkinson's, what I'm most interested in seeing is that the research is not isolated in pockets across the country. There is some overarching strategy people can feed into. I need to feel that something is being done collaboratively.
9:45 a.m.
As an Individual
I think we need to consider that our system of health care, which has focused largely on curative interventions, needs to focus on caring interventions. What this means at a policy level for people living with progressive illness—and I would say that it definitely impacts Parkinson's but transcends that—is that care requirements need not be something focused on prognostication.
What I mean by that is that when you go into a hospital, everything's free. It's free, because that's acute care. We can pay for that, because we know it's short-term. For people with chronically progressive diseases that result in huge amounts of functional loss over time, where's the equity? What I would suggest is that the volume of care and the focus of that care should be focused largely on function, not on the time you have in an acute-care bed.
Equity means that when you get a lot of services, because you have something that's short-term, and then you get relegated—that's the term I would use—to something more chronically progressive in its focus, such as long-term care, those programs, if that's the emphasis of health care, are going to focus on long-term care as an economy of scale. Put a lot of people in a box, and things get cheaper. What are we going to do with those programs to make sure that they're equipped to focus on the needs of those people?
Policy level means that you have to fund it more. Those people work their tails off, but it's conveyor-belt care: get them up, get them dressed, get them fed, get them back to bed. It's not good enough. I think we need more care, and we need to focus on long-term care, if that's what it's going to be, by changing the focus of those services.
9:50 a.m.
Conservative
The Chair Conservative Joy Smith
Our time is up, but I'm going to extend it. I want everyone to have the chance to answer your question.
Please, Mr. Ireland.
9:50 a.m.
Chair, Board of Directors, Parkinson Society Canada
Thank you, Madam Chair.
There are probably two areas. One is my big bugaboo, and that's research. Currently NHCC is in the process of finalizing a policy proposal for a $600-million joint public-private partnership. I think coming from the world of the YMCA, partnerships is a very strong component of working together collectively. That partnership would see a five-year partnership building on the private donor investment of $200 million and proposing the government match the private dollars two to one for a total government investment of $400 million over five years.
One of the things I've learned from Parkinson Society Canada as I've gone to a couple of research reviews, peer-reviewed by the 15 top scientists across Canada, and have seen all these wonderful proposals from new researchers, thinking about what causes Parkinson's, maybe one of these researchers in fact has the answer. However, as an organization, we at Parkinson's are able to fund probably only about 16 of the 30 that we could have funded this past year.
So we're losing a great big piece there, and I think this is an opportunity for the private sector and the government to work collectively together in a very strong partnership that sends some very strong messages to the Canadian public.
I think the other piece--I think you've heard it a little bit today--is the piece to establish an advisory committee on income reform, reporting to the ministers of finance and human resources and skill development, looking at such things as introducing a refundable disability tax credit for low-income Canadians; allowing spouses to claim the caregiver amount; making employment insurance sickness benefits more flexible to allow people with chronic conditions to work part time--
9:50 a.m.
Conservative
The Chair Conservative Joy Smith
Mr. Ireland, I can't have you go through the whole list, but I think it's very important, so if you could make sure that this list gets to the clerk--