Subcommittee on Neurological Disease Committee on Nov. 23rd, 2010

[The Chair, Conservative, Joy Smith]

I call the meeting to order. Good afternoon....

Oh, good morning.

[Voices]

Oh, oh!

[The Chair, Conservative, Joy Smith]

My apologies. I had a group of people in my office and I got talking away, and my back was to the clock, so I did the 100-yard dash.

At any rate, it's a pleasure to be here. This is our Subcommittee on Neurological Disease of the Standing Committee on Health. Pursuant to Standing Order 108(2), the study on neurological diseases will be done today.

We have witnesses with us from the Ottawa Hospital, University of Ottawa, Dr. David Grimes, associate professor. Welcome, Dr. Grimes.

We also have, from Parkinson Society Canada, Carmel Boosamra and Bruce Ireland, the chair. Welcome, both of you.

As individuals, we have Chris Sherwood and Frances Squire.

Chris, I think, will be here momentarily.

Welcome, Frances. We're glad you're here.

I have some very good news for this committee, something that I think will really warm your hearts. You'll remember Greg McGinnis, who suffers from Parkinson's, who appeared before our committee last week. Now, Mr. McGinnis spoke to us at committee about the lack of funds to get treatments. After last week's meeting, the two doctors who appeared before the subcommittee, along with the Parkinson Society, made arrangements so that Mr. McGinnis could receive the treatments he needed before he returned home. If you recall, he didn't have the money for Botox. They took him into the hospital and they treated him, and said they would continue doing that.

I thought that was amazing, and I thought the subcommittee would be very appreciative of the fact that we were able to be a catalyst, to help somebody in a real-world way. It's going to be a very special day for us folks today, between this and the stem cells—I'll tell you more about that later.

We will be dealing with Dr. Duncan's notice of motion at the end of the meeting as well. Thank you.

We're starting with Dr. David Grimes.

[Dr. David Grimes, Associate Professor, Ottawa Hospital, University of Ottawa]

Good morning.

I'm a clinician who runs a very large Parkinson's clinic here in Ottawa. I am also involved in clinical research as well as some basic science research. I've been looking after Parkinson's patients for close to 12 years.

It became very apparent to me that as Canadians we could do a lot better in both our basic research realm, clinical research, as well as in the clinical care of patients. Two years ago I was involved in organizing a meeting for really all the players in Canada to come together, both clinicians as well as basic scientists, to look at how we could do a better job at studying Parkinson's as well as caring for individuals with Parkinson's.

Quite a few things came out of that meeting. I had all the major Parkinson's centres from across Canada there. It became very clear that the specialized Parkinson's centres actually care for less than half of individuals with Parkinson's in Canada, that a lot of the centres cover patients from a wide geographic area--so we have patients actually travelling a long way to get to see us--and that we could do a much better job if we were better organized from a basic science and clinical research standpoint.

One of the big things that came out of the meeting was, from a patient care perspective, can we do a better job of helping other physicians? If we're supposed to be the specialists and we're not seeing everybody who has the condition, how can we help other physicians care for and look after these patients?

One of the ways to do that is to look at guidelines. So we looked at all the different guidelines from around the world. It became apparent that our Canadian health care system was different from other health care systems and that we did need to come up with our own set of guidelines. We actually have now just finished the first draft of these guidelines. It has been a big undertaking and we're hoping to have them published in the spring. We're really hoping that this will be a stepping stone to developing and having more physicians understand what the best treatment options are for our patients in Canada.

The other thing that came out of the meeting was that it's a really patchwork treatment for patients in these specialized clinics. Most of the clinics have nurses, and the funding for the nurses comes from many sources, sometimes from provincial governments, sometimes from hospitals themselves, and sometimes it's from us as clinicians paying the salaries of the nurses within the clinics.

A couple of the clinics have occupational therapists and physiotherapists--they are so important in trying to care for these individuals, who are among the most complicated to look after--and then it's actually very uncommon that we have social workers involved in our clinics. Parkinson's is a chronic condition that progresses slowly and it gets so frustrating when we see individuals with Parkinson's who come into our hospitals, our acute care hospitals, when we really could avoid that. Almost all the time I have at least one of my patients in an acute care hospital somewhere in the Ottawa Valley region when it would probably not be necessary if we had a social worker, something simple like that. We could avoid that from a health care cost standpoint.

It also became very clear studying Parkinson's that there are a lot of very exciting things that are happening in basic research and our ability to translate that into clinical treatments is rapidly increasing. There is a large number of compounds that are being developed that are getting close and are now coming into clinical trials.

As Canadians we could do a much better job, I think, of being a leader in that and trying to help pharmaceutical companies develop these treatments within the Canadian context. There are a lot of exciting things happening in Parkinson's. There's still a lot more, though, that we need to do.

Thank you.

[The Chair, Conservative, Joy Smith]

Thank you, Dr. Grimes.

Who is speaking from the Parkinson Society? Would you both like an opportunity to speak?

Let's start with Mr. Ireland, please.

[Bruce Ireland, Chair, Board of Directors, Parkinson Society Canada]

Thank you, Madam Chair.

You mentioned earlier the treatment of Greg McGinnis. I just wanted to note for the committee that Dr. Grimes was the physician who treated him last week. On behalf of the Parkinson's community, and I'm sure your committee, we would like to thank him for doing that, for stepping up, and helping Greg with his treatment.

[The Chair, Conservative, Joy Smith]

Thank you, Dr. Grimes. It warms your heart.

[Dr. David Grimes]

It was an unusual request.

[Bruce Ireland]

Thank you, Madam Chair, and thank you, committee members, for creating this opportunity for Parkinson's communities to speak out.

I come to this hearing today wearing two hats--first and foremost, as partner and caregiver to my wife, Karen, who was diagnosed with Parkinson's at the age of 50; secondly, I'm a long-standing volunteer with Parkinson Society Canada and currently the chair of the board.

In 1998 my wife, Karen, slipped into a serious depression that persisted over two years and led to a complete mental breakdown, requiring hospitalization for over eight weeks. Over the course of that two years, Karen's psychiatrist suspected that her depression might be linked to something neurological. Sure enough, Karen was diagnosed with Parkinson's on December 27, 2000.

The diagnosis was totally unexpected and overwhelming. Karen was back in the psychiatric ward in very short order. That was ten years ago, and it was an incredibly stressful time. Our son was grown, but our daughter, Michelle, has Down's syndrome and lives with us. She was 17 at the time. Karen was literally suicidal, unable to care for herself, unable to care for our family, unable to work. I was working full time on the biggest project of my career and juggling to keep everything together at home.

Since then, the non-motor symptoms of Parkinson's have been Karen's greatest challenge. Her depression is ever-present, and she has developed a severe sleep disorder. She takes a cocktail of four medications every night, without which she simply could not sleep. Her mobility is compromised by Parkinson's and by severe arthritis in her knees. She gets incredibly frustrated by her inability to move around, which amplifies her depression.

Last year I made the decision to retire early to care for Karen and Michelle. I resigned my position as the president and CEO of the YMCA of Oakville after 23 years leading the association. I attend to their daily needs and run the household. I do all the cooking, cleaning, laundry, grocery shopping, and driving.

Looking back, Parkinson's has cost our family dearly in lost income and related expenses, in the quality of our family life, and our dreams for the future. We still have a good life, but it's not what either Karen or I imagined. Ours is a common story for people living with Parkinson's.

As chair of Parkinson Society Canada's board of directors, I see and hear about similar situations playing out from coast to coast. That is why Parkinson Society Canada's unique role as the only organization providing support to individuals and families is so critical.

Through Parkinson Society Canada, Canadians with Parkinson's can connect to a supportive community close to home. They can access the highest-quality information about Parkinson's and they can take control by advocating for themselves and for the wider community of people with Parkinson's.

Parkinson Society Canada also plays an invaluable role in funding Canadian researchers, investing donor dollars to support basic, clinical, and psychosocial research that is essential to improving quality of life today, and to uncovering the treatment that will stop Parkinson's in its tracks. Often-overlooked health charities like Parkinson Society Canada play a major role in advancing neuroscience in Canada. Unfortunately, with limited donor dollars, we turn away more projects than we can fund. It can be very frustrating to see so many excellent peer-reviewed projects go unfunded. For this reason, Parkinson Society Canada is working with our NHCC colleagues to propose an innovative, five-year $600-million research partnership with the Government of Canada to leverage private donor dollars for maximum impact.

Parkinson Society Canada also works to ensure that Canadians with Parkinson's receive the highest-quality care. In 2005 we developed a national program to better educate family physicians about Parkinson's disease. Over the past several years, we helped bring the Canadian community of Parkinson's researchers together as the Parkinson's research alliance. One of the most exciting results of this work is the development of a Canadian clinical guideline for Parkinson's to be launched in 2011.

Most recently, Parkinson Society Canada launched a program to educate hospital and long-term care staff about the importance of administering Parkinson's medication on time every time. The program is called “Get it on time”, and is an excellent example of international collaboration. The program was first developed by the U.K. and subsequently shared with Canada as a best-practice tool. Like our research investment, this work is undertaken entirely with donor dollars, as Parkinson Society Canada receives no funding from any level of government.

In closing, I'd like reiterate my thanks to each of you for undertaking this initiative. Brain conditions like Parkinson's are devastating families in every riding across this country.

I am hopeful that in addition to the important work being undertaken through the National Population Health Study of Neurological Conditions, your work will draw much-needed attention to brain disorders like Parkinson's as an urgent health, social, and economic issue facing Canada today.

Thank you.

[The Chair, Conservative, Joy Smith]

Mr. Ireland, thank you. I think you're an extraordinary man, hearing what you've done with your family. There are many families who do have catastrophic illnesses and it drains the family a great deal. I think you are a real role model for a lot of us.

Thank you, Mr. Ireland.

[Bruce Ireland]

Thank you so much.

[The Chair, Conservative, Joy Smith]

Ms. Boosamra.

[Carmel Boosamra, Board Member, Parkinson Society Canada]

Good morning. My name is Carmel Boosamra, and I want to thank you for this opportunity to speak to you today about my life experience as a caregiver to a person who lived with Parkinson's disease for almost 17 years.

When my late husband was diagnosed with Parkinson's disease, we both could not imagine what a long road, with many twists and turns, we would travel together.

First, I want to impress upon all of you that, as a caregiver, I have lived and witnessed the full spectrum of issues that a family unit must deal with when caring for someone living with Parkinson's. I watched as my husband, Frank, transitioned from a full member of society, being the owner and operator of a small business, to a person who was totally dependent on the support from a wide range of social agencies, and finally ending his days in a long-term care home.

I could never have realized that I would become a caregiver to a man who had been previously gregarious, good-humoured, and who lived life to the fullest. Frank's mobility declined rapidly--from walking on his own, to relying on the aid of a cane, to using a walker, and finally being in a wheelchair full time. I had to assume an ever-increasing role of providing for his daily functions, attending at his many medical appointments, and management of his daily medication, while working with his neurologist to figure out which medication worked best for his Parkinson's symptoms as they progressed. I negotiated and advocated with the local community care access centre for much needed home care, and I had a continual dialogue with the many community-based social agencies for support.

I juggled all this responsibility while working full time. Upon reflection, I now realize I suffered from caregiver burnout, but during this period I was in survivor mode. I would venture to say that's a common theme for anyone who is or has been a caregiver.

After some five years, it became clear to me that I no longer had the ability or stamina to provide moral and physical support to my husband, who by now was displaying cognitive decline and for whom medication was fast becoming ineffective. I cannot state strongly enough the stress I felt each day as I left for work, knowing that my husband was on his own, and praying that he would be safe in the home.

I had to make the most difficult decision that it was time to move Frank to a long-term care home. For the next five years, I watched helplessly as he continued to decline cognitively, developing Lewy body disease. With the loss of his ability to communicate verbally, along with all the characteristics of late-stage Parkinson's, our marriage was now predicated on my daily visits to feed him and hold his hand.

In all of this there was the underlying burden of economic impact on our lives. Early on, my husband and I had to make the difficult decision to give up his working life and rely on his Canada Pension Plan disability benefits and my salary to meet our daily living expenses. There were numerous medical expenses that were not covered by provincial health plans or third-party insurance. I was always aghast each year at tax preparation time when I saw the amount of medical expenses there were to claim. Out-of-pocket expenses for such things as daily living aids, mobility aids, dictated we could not afford my taking a leave of absence from my employment, as some of the costs of these were covered through my employment medical insurance plan.

The stress of caregiving had a very substantial cost to me personally, in that two months after my husband's death I was diagnosed with invasive breast cancer. That stole the next year and a half of my life. I mention this because I had seen a very visible sign that something was wrong with my body earlier that year, but I ignored it and did nothing because I was so focused on my husband's needs.

My experience as a caregiver to someone living with Parkinson's is not all that different from others who are caring for someone. The family unit is profoundly affected when one member is diagnosed with Parkinson's because it means they must navigate the medical system to ensure the person receives proper diagnosis and care, as well as managing all the symptoms of Parkinson's and finding coping mechanisms to help ease the impact on daily living.

It causes the family to jump with both feet into a medical system that is not doing a good job of diagnosing and caring for the Parkinson's population. There is the lack of a clear, multi-disciplinary approach to managing this disease, and health care professionals receive little education on Parkinson's.

I now know there is a grave misunderstanding in the general public and the medical profession about this disease. This is why I have dedicated so much of my personal time to advocate for people living with Parkinson's. I want to effect change of attitudes in government policy-makers by educating them to the disease and its associated needs.

I am excited about our proposed brain strategy that seeks to address some of these issues: integrated care; caregiver support; public education and awareness, just to name a few.

It is my hope and dream that we will see this brain strategy come to fruition. It will profoundly ease the burden and provide hope to so many Canadians living with a neurological disease.

It would be the ultimate way to honour the memory of my late husband.

Thank you.

[The Chair, Conservative, Joy Smith]

Thank you very much. Your testimony is very compelling, and we so appreciate you being here this morning. This is why this committee is so committed to studying this issue.

We'll now go on to Mr. Chris Sherwood.

Welcome. I'm glad you made it here.

[Chris Sherwood, As an Individual]

Thank you.

First, I must apologize. I've been quite sick lately, so I'm a little less organized than I would normally be. That's why I'm reading from my laptop, because I didn't have a good chance to print it out. I hope that's okay.

[The Chair, Conservative, Joy Smith]

That's fine. Thank you.

[Chris Sherwood]

My first official introduction to Parkinson's was with a neurologist who, as part of his overall neurological assessment, at one point began to check me for rigidity. Being a nurse and knowing what he was doing, I said to him, “So you're assessing me for Parkinson's,” to which he replied, “I'm not assessing you for Parkinson's, you have Parkinson's.”

Suffice it to say his less than warm-and-fuzzy approach was hardly comforting, and resulted in me not going back to him.

A few months later, after starting to see a movement disorder specialist--a sub-specialist within neurology--this well-meaning person offered me what he no doubt considered assurance but was nevertheless equally unhelpful. He said, “Don't worry, Chris, you don't die of it”—Parkinson's, that is.

I replied to him, “So let me get this right. Barring other unforeseen circumstances, I'll die of Parkinson's-related complications, which I wouldn't have had if I'd not had Parkinson's. Would this mean that people with AIDS don't die of AIDS, they die of AIDS-related complications?”

Needless to say, he understood, and agreed with the point I was making.

But being well-meaning doesn't make one competent. This is not to suggest that in other aspects this person lacked competence, but in that circumstance he most definitely was not competent.

What would be the significance of his comment? I mean, what difference would it really make? I, being a palliative care professional, was able to step back and look somewhat objectively at the situation at the time. I knew he didn't mean to be unhelpful, but he was, nevertheless. He, as the professional with knowledge and expertise, had the ability to impart this to me as the patient.

Most patients are not like me. They really don't know what they don't know. The information a neurologist provides can make a huge difference to shaping their understanding of their disease and what their future will look like.

The significance is this. If a doctor can't help me see what I don't yet see, what would I do differently? For example, if ten years from now, when I planned to take the Mediterranean cruise I've always longed to go on, at that point my disease has progressed to the point at which I'm no longer able to, would I have done so sooner? One might transfer this to any number of other situations as well, including compassionate care leave, taking time simply to be with family, etc.

Some people may not want to know what they don't yet know, in which case doctors shouldn't barrage them with information they aren't prepared to hear. But neither, too, should they be the encumbrance to patients receiving information they are prepared to hear.

What does “support” mean to people with Parkinson's? We have a health care system that has historically focused on assessment data that it acquires through any number of objective means—scans, biopsies, bloodwork, and any other variety of tests that can provide very helpful information—but that tell absolutely nothing about the patient's subjective illness experiences, those being what people feel as they live with illness.

I'd like to share a quote from a physician I worked with in Vancouver who did a study many years ago on what dying people want. Although I wouldn't necessarily say that I am dying, per se, the issue transcends beyond so-called dying people to everyone receiving care. He says:

“The way health care providers talked to me caused me more pain than the disease itself.”

This is the theme which came as the greatest surprise. It is one I didn’t want to hear. Initially I dismissed and trivialized the experience of the co-researchers. But it is a theme that could not be ignored for long.

This was a recurrent and resounding theme throughout the entire study, and Dr. Kuhl is currently conducting further research.

Living with illness means living with suffering, whether it's Parkinson's disease or any other illness. But we have a system with health care providers who are being constantly exposed to suffering, day in and day out. Progressively over time, they experience fatigue and find it challenging to know how to respond to it.

This is where hospice palliative care fits in. Hospice palliative care is not just about caring for imminently dying people, and should not be limited to just specialized programs that focus exclusively on this type of care. The definition we work with in Canada is as follows: Care that aims to relieve suffering and improve the quality of living and dying.

This is not mutually exclusive to care that might aim for cure. But this is especially relevant for illnesses that do not have a cure, which includes any number of disease types, including Parkinson's.

In fact, hospice palliative care is really just good health care and provides a model for how to do this. The reason the field of hospice palliative care exists at all is simply because people made the observation that we weren't providing good health care to people who live with progressive life-limiting illness.

It is important to note that 90% of us will die of progressive life-limiting illness of one form or another. Fewer than 10% die suddenly. Societally we must ask how we want to care for those 90% of people who will one day find themselves in these circumstances. What should this look like?

I'll make one additional observation. At this point, we have a system that is grossly inequitable. People who live with chronically progressive disease types receive a much lower standard of care than people living with illnesses that are more acute in their decline, illnesses such as cancer. People with chronically progressive diseases usually, at some point, end up in long-term care. If you ask anyone if that is a place they want to go, they will almost always answer no.

It should be noted that long-term care is not long-term care anymore. It is mostly end-of-life care, such that the average length of stay from admission to discharge--that is, death--is under two years. The long-term care sector has not been equipped to deal with this hugely different demographic.

I'll ad lib here for a couple of minutes. I was speaking to a group last night, a group of people who work exclusively in long-term care. I asked them who there wanted to go to long-term care. Not one hand went up, and there were about 40 or 50 people in the room.

I said, “Wait a second. Who here wants to go to long-term care? You guys work in it.” There was not one hand.

So I ask the question: why have we created a system that nobody wants, and what could be done differently?

You can analogize this to the psychiatric facilities that existed many years ago, where people were warehoused and segregated into big boxes. That's what we're doing with our dying population, as more than 60% or 70% of us die in big-box institutions. It doesn't need to be this way, but we've resigned ourselves to believing that the system we have is the only system we can have.

What could be done differently?

Create smaller boxes. Smaller boxes mean more individualized care. That's what residential hospice is--nothing more, nothing less--and it doesn't need to be limited to people who are imminently dying.

Why is this important? Because the setting matters. If the setting didn't matter, you could take all the same care you would provide to anyone in the most beautiful of settings and provide it to them in a prison cell, but their experience wouldn't be quite so warm and fuzzy.

Why can we not make settings that are more integrated into our communities, and by doing so, allow people to live within our communities in a more integrated way?

[The Chair, Conservative, Joy Smith]

Thank you, Mr. Sherwood. I've given you double the time, actually.

[Chris Sherwood]

Did I take too long? Oh, I'm sorry.

[The Chair, Conservative, Joy Smith]

The way it works it that there's a certain time limit.

[Chris Sherwood]

I apologize. I thought it had been only five minutes.

[The Chair, Conservative, Joy Smith]

No, no, don't; I doubled your time because you were so interesting. I think it's very important to hear what you have to say. You will have a chance, also, when questions are asked.

[Chris Sherwood]

No problem. I do apologize. I literally thought it had been only five minutes.

[The Chair, Conservative, Joy Smith]

No, no, I'm very pleased; I just thought maybe I should let you know that I have to go on to the other speaker now. I hated to even interrupt you.

[Chris Sherwood]

No, that's good. Thank you. I appreciate your interrupting me.