Without a doubt, each person with them his or her own voice and experiences. These conversations are reflective of the uniqueness of each person as a result will all be different. 

When requested, names and personal details have been withheld for privacy reasons.

Every parent’s worst nightmare is that their child is sick or seriously injured. Imagine having a normal pregnancy, with excellent pre-natal care and normal tests throughout, only to learn that your child has been born with a congenital disability.  This is what happened to care-giver Hannah.  “Everything was fine during my pregnancy. I wasn’t sick, things were normal and all the staged ultrasounds were fine.  I went into labour at an appropriate time and things looked as if they would go smoothly. When I got to the hospital doctors told me that the fetus wasn’t tolerating the contractions very well. Tests were performed immediately and I was told that I had contracted a virus while pregnant that I was not even aware of. This virus, which had not made me sick at all, can greatly impact the fetus. It was then that I learned that my daughter was likely to be born with cognitive disabilities as well as a variety of other challenges.  I was terrified, scared and sad. I wouldn’t wish that feeling on anyone.”

Hannah’s daughter spent nearly a week in the neo-natal intensive care unit, required transfusions and fought for her life for the first few months. The infection that had caused the congenital problems had cleared but the damage done continues to be felt today. “We knew we were going to be in for a tough road. My daughter has a variety of challenges, including cerebral palsy. My spouse, daughter and I deal with these challenges every day. It’s tough but you do what you have to do.”

Throughout this process, Hannah and her spouse have worked with a variety of health care providers. One of the first doctors that the family saw was able to provide them with some advice that she carries with her to this day. “When my daughter was born, one doctor told me that I was going to talk to a lot of health care providers who were going to act as if they had a crystal ball. They were going to predict things that my daughter would or would not be able to do.  This doctor told me not to listen to those predictions. She reminded me how resilient babies are and how much their brains can adapt to situations.  I take that with me to this day, no one can know what my daughter will or won’t be able to do and it’s pointless to tell her she can’t do something.  We approach her care not from what she can’t do, but from the perspective of what she can.”

Hannah’s daughter also visits a cerebral palsy clinic several times a year located roughly 90 minutes from their home.  It’s a long drive for the family, but the way in which the clinic approaches their daughter’s care makes it all worth it.  The cerebral palsy clinic has a team of providers that includes, physicians, nurses, occupational therapists, physical therapists, pharmacists, dieticians and social workers.

At each visit the family meets with all of the providers, at the same time. “The providers come in together. It’s a big group, about seven of them, but they come in together and spend a long time with all of us. They do assessments, they talk to each other, they discuss the case and most importantly they include each of us in the process.  They talk to my daughter and joke around with her. They always include both my spouse and me in the dialogue and they make sure that we’re clear about what’s happening. I have never seen anything like this!”

Not only is the cerebral palsy clinic an excellent example of collaborative, patient-centred care, they fundamentally understand that the team-based approach to whole-patient care will yield the best results. As Hannah notes, “The people at this clinic really get that they are doing more than seeing a series of diagnoses. They understand that they are treating a little girl and she’s a person the same as anyone else.”

Beyond the clinic doors, the team has also made an effort to reach out to the therapists who treat Hannah’s daughter on a daily basis. “Team members from the cerebral palsy clinic will call the therapist to discuss care and to talk about what they have seen and to be collaborative. I am so extraordinarily grateful to these people for being so incredibly thorough and comprehensive in my daughter’s care.”

The care-givers are also dealing with incredibly stressful situations and require their own type of care. The clinic that Hannah speaks of has not forgotten about Hannah or her spouse.  “The first time someone asked about us, I nearly cried because I hadn’t really thought about it. We had been so focused on our daughter. So when the team asked us when the last time we had a date was I was floored. They want to know how we’re doing and how we’re managing the stress of the situation. They ask about our home-life. They inquire about everything. What’s also important is that they encourage questions. I never feel like a question is a burden and I never get the sense that they mind if I challenge something. I am completely and totally able to be free and speak up. I can be overwhelmed. I can say ‘it’s too much’. I can ask for help. It’s very liberating.”  The clinic team understands that fundamentally Hannah and her spouse cannot be good care-givers to their daughter without taking care of themselves too.

Hannah credits the clinic, as well as her daughter’s local health care team, with helping her get where she is. As a result, today Hannah’s daughter is thriving. “My daughter’s capacity is enormous. We learn so much from her and she’s doing very well. She is a fun-loving girl doing all of the things that people never thought she would. I’m so glad we decided to focus on what she could do and helping her with that rather than dwelling on what she might not be able to do.”

Most of us can’t imagine what it’s like to have to watch every last detail that we choose to share with other people.  We engage in “water-cooler” talk at the office, share details of our lives with friends and colleagues, and occasionally we share too much on Facebook.  While of course there may be elements of our personal lives that we don’t make a point of sharing, by and large we don’t worry about censoring our every word.  When details slip out, for most of us it’s no big deal.

But, some people don’t have the luxury of letting those details slip. These are normal people who work hard and do the best they can every day. Yet, they remain so wary of others’ reactions to them, they are forced to censor themselves. These are people with mental illnesses.

Culturally we’re more sensitive now than we were 25 years ago about certain types of mental illnesses. Depression, anxiety disorders and eating disorders for example are understood in many countries as serious medical conditions that require treatment.   Yet, there are other mental illnesses that are still misunderstood. Illnesses like bipolar disorder or schizophrenia are often feared by those who are ill-informed.   We’ve all heard news stories when a random act of violence has been perpetuated by someone with one of these illnesses. Rather than attributing the act to something beyond the illness, or rather than understanding that the person has an illness, reporters simply tell us ‘The perpetrator was bipolar’ as if those words somehow explained her/his actions. Thus, we often lump all people with these conditions into a group who are considered both dangerous and crazy.

Consider what it would be like to live with one of these illnesses. Think about the stigma you would feel in telling people about your condition. Would you want to share those details about yourself if you knew that it would fundamentally change the way people perceived you?  Most of us would not.

Now think about someone living with cancer, diabetes or a heart condition.  Would we ever consider them anything other than serious medical conditions that require treatment and management? And of course while some people with these illnesses may choose to not share the details with everyone, they generally do not fear of losing their jobs or their friends if someone were to find out. No one would say the person with cancer was simply “dangerous and crazy”.

There is no doubt that care and treatment for those with mental health illnesses is different than people with other chronic conditions.  For many with illnesses like bipolar disorder and schizophrenia there are wonderful support groups that help with housing, employment, social assistance and medication. These programs, and the care providers that administer them, are doing a great deal of good for people with these illnesses.  But what about those who manage their conditions and are “high-functioning”? They are a forgotten group that falls through the cracks in our system.

They have university degrees, they earn their own money, they have their own homes and they have professional jobs.  They also see their psychiatrists and manage their conditions with the right medications. Many live double lives, but not necessarily by choice. They do so out of need.  There are many who wish to be able to live freely and openly, but can’t because doing so would jeopardize all that they have worked so hard to achieve.

There are no support systems that help them navigate the challenges of employment issues (do I tell my boss or not, what if I lose my job if people find out?), and there is no help for these people in managing the social stigma of these illnesses. Many want to be able to give back and offer support to others with mental illnesses, but again the fear of the stigma they would face makes it impossible for them to do so.

These people have had to look for alternatives in managing their own care because the health system does not support them. Health care providers spend their educational careers and professional careers caring for people.  It is what health care providers do. Yet these generally caring people who are taught to help, are unable to do so effectively for those who are high-functioning individuals living with socially stigmatized conditions.  So the challenge is set out for health care providers.  What do you intend to do about this stigmatized and marginalized group of people who are as deserving of care and support as anyone else with a chronic condition? Can you in good conscience continue to marginalize these people?

“In July 2007 I slipped on a wet staircase and struck my lower back. I thought I was fine but within three days I had lost feeling from the waist down. I could walk but I was numb. Years before this I had experienced strange intermittent symptoms, numbness in my fingers, blurry vision etc. but every time I visited the doctor, tests showed nothing. It wasn’t until I fell down the stairs that I really was able to connect the symptoms to something much more serious.”

After her 2007 fall, X-rays were performed and showed that no bones had been broken. However, by this point the numbness had moved into Z’s ribcage and her collar bone resulting in breathing difficulties. Z was referred to a neurologist who performed a battery of tests.

After months of testing finally a diagnosis was reached: multiple sclerosis (MS). From 2007 until 2012, Z was treated for MS. “I spent about five years taking MS medications but instinctively I knew something wasn’t right.  I wasn’t getting better, the drugs weren’t helping and I just had a sense that something else was going on.”

Early last year, Z began experiencing problems with her eyes.  The pain was so severe she described it as feeling as if her eye was being sucked out of its socket.  Trips to the opthamologist indicated no problems. Visits with her MS specialists led to additional tests. Notably tests for a relatively rare condition called neuromyelitis optica (NMO) were also performed, but those too came back negative.  Problems persisted but no one knew what to do. “I had one doctor tell me that the tests I was undergoing were simply too expensive for him to be able to authorize additional testing. He told me I’d just have to deal with my MS diagnosis.”

Z had the courage to persist and continued to ask questions, knowing something else was going on. Eventually this paid off. Through her MS Society she was able to connect to a doctor who is an NMO specialist through the Brain Research Centre at UBC’s NMO research day that Z decided to attend.  “Everything kind of came together at once. I attended the NMO Research Day, and I had a consult with this new doctor. I got a chance to talk to people who were experiencing the same symptoms as me and I learned from the doctor NMO tests can come back negative when in fact they are positive as often as 40% of the time. If a person persists with these symptoms, then more tests need to be carried out.”

Two additional NMO tests followed, which also came back false negative. After an extensive neurological exam and a complete review of her medical file, the diagnosis was confirmed in November 2012, Z did not have MS, she has NMO.  “I was told by doctors that nothing was wrong, that it was a pinched nerve and if I could only lose ten pounds I would be better. I knew enough about my body to know that this wasn’t the case. My life is worth too much to just let things go. I knew I needed to fight for myself and so I fought for this diagnosis .”

Among the scarier aspects of the incorrect diagnosis is that standard MS therapies can in fact exacerbate symptoms of NMO. “I was told that I am really lucky to be alive and that I am not blind or paralyzed given how long I’ve lived with NMO and had either no treatment or the incorrect treatment.  I have altered body sensations and there is numbness that won’t go away. As well, small motor skills are difficult and the pain can be acute but I’m here. I live with NMO but I don’t let it define me.”

Because NMO is a relatively rare, there are no support groups out there.  The MS Society has filled the gap by providing NMO patients with a community. “I worked extensively with the MS Society and have continued to work with them as someone with NMO. They have been fantastic and very supportive.” Z has chosen to take this life-changing diagnosis and make it a positive by giving back to those who need help by working extensively with the MS Society and now as an NMO advocate. Z is also connected to the University of British Columbia Health Mentors Program, working with a nursing, medical, dental and physical therapy student.

“I really enjoy working with these engaged and eager students and have been able to teach them a bit about how important it is to listen to your patients. I spent years having health care providers dismiss me and it needs to stop. I’ve been teaching the students a bit about how to respond as a health care provider after a diagnosis has come in. Don’t pat people on the head and send them on their way. Don’t tell people that if only they had done xyz they would be better, and don’t tell them to just start dealing with their diagnosis.  They need to learn that being diagnosed with something is a process and you will have to grieve through it. I also think it’s really important to impress on them how critical it is to use the right language when talking to patients. For example, don’t tell me I ‘suffer’ from something. I have always preferred the providers that respect that I can live well with the condition and who work to help me do so. The bottom line is treat your patient like a partner in their own care, because they are! ”

Clearly there have been large-scale systemic failures that led to a misdiagnosis for Z. While she is thriving today, she still sees places in which the system has failed her and others with chronic conditions. Z is only able to receive treatment in a couple of places, both of which are long commutes from her home. Her specialist is a ninety-minute commute and the physicians at her community hospital are unable to treat infused patients. Add to this the fact that information is not shared between health authorities and patients are in a precarious and frustrating position. “Where will I go if I have an emergency? Who will understand how to treat me? This is scary. I don’t dwell on it, but it’s in my mind and I think if the system had a few fail safes, like electronic records, then perhaps it would be clearer to health care providers how to treat me. ”

Z has some words of advice for others out there navigating their way through the system. “The relationship you have with your health care providers is just that, a relationship. Intimate details are shared and that person knows you very well. If it’s not working, get out of it and find someone that you can connect with. As patients we don’t have to stand for poor treatment and bad diagnoses. That noted, each of us can also learn how to be proactive in our own health care.  Ask the questions. Don’t be afraid of being a squeaky wheel. This is your life and you deserve every opportunity to live a good one.”

To learn more about NMO please visit, http://www.guthyjacksonfoundation.org/.

Without a doubt, each person brings with them his or her own voice and experiences. These conversations are reflective of the uniqueness of each person and as a result will all be different. 

When requested, names and personal details have been withheld for privacy reasons.

Maggie was a teenager in the late 1980’s when she was diagnosed with dystonia, a neurological movement condition that also affects her speech. It was her family physician who referred her to specialists to diagnose her condition.  There was no team that helped with this initial diagnosis. There was no Internet to educate oneself. Specialists wrote letters to the family physician regarding their perspective on Maggie’s condition, but aside from that, no communication and no follow through occurred. “At sixteen, I felt that I needed to defer to the providers treating me.  They were the professionals and I looked to them to find answers. When they told me that there was nothing they could do, my only option was to go back to my general practitioner and be referred somewhere else.” Maggie then visited neurologists, laryngologists, as well as allergists in both clinical and hospital settings but never got any sense that these providers were focused on treating anything other than the condition. “My definite sense was that they were working on me as opposed to with me.”

Several years ago, Maggie received another difficult diagnosis: cancer.  In contrast to her experiences with her neurological condition, she did have the opportunity to experience team-based health care. “I found that the team I worked with was pretty collaborative. The various doctors I saw did in fact talk to each other about my care, but they definitely had prescriptive protocols to follow, which I felt had very little to do with me as a person. While the nursing team provided me with great care, I also noticed that very often the nurses spoke to me in hushed tones as if they weren’t quite sure that they could jump in and offer their perspectives, for example on complementary and alternative medicines I might also try using.  So although it was a good team, and they helped me great deal, it wasn’t quite as collaborative as I thought it could have been.”

As she was working with the more traditional cancer care team, Maggie also received care at an integrative cancer care clinic that works in conjunction with the traditional treatments.  This alternative clinic’s philosophy is to support the body to heal itself as it is being treated with the more drastic measures used in traditional cancer treatment.  The clinic employs a patient-centred approach, with the physicians often referring Maggie to other health care modalities that she required in order to heal. Nutritionists, acupuncturists and practitioners of meditation, relaxation and yoga were all available to Maggie. Moreover, it was clear that the providers were in contact with one another about her case. “The first time I went to the clinic I was a bit surprised because the first thing the doctor did was give me the airspace to talk about what I needed.  Before that I had seen doctors who talked to me about what I needed; this doctor asked me.”

While the experience with both the traditional and non-traditional clinics was positive, Maggie still had the sense that the providers were focused on the condition and not the person. “I had great care. I’m very grateful to them, of course, but I had this realization that really empowered me. It hit me that, while the providers definitely brought an expertise about the condition and a medical understanding of it, they couldn’t be experts about how that condition manifests itself in me. I am the expert on me. I am in charge of my health care.”

With this new perspective in hand and with the help of referrals from the clinics she visited during her cancer treatment, Maggie was able to find new support for her neurological condition. She was referred to a local, leading rehabilitation centre for assistance with her speech and movement challenges. This rehabilitation centre served as an excellent example of team-based care. A variety of providers work at the facility and they ensure that the patient/client is a key part of the health care team.

“I learned in working with a speech therapist that my condition isn’t a speech impediment, but rather a structural issue, meaning that we needed a different approach. My speech therapist and I worked together to understand and improve my condition. I know what works for me and she gets the mechanics of speech. She really embodies this concept that I am the expert in my own care and she is there to assist me. Together we created a care plan that utilized our collective expertise.” Without a doubt, Maggie considers this work both successful and highly rewarding.

As a result of her conditions and treatments, Maggie has a unique and very mature perspective on challenges in the health care system. She articulates an idea that she refers to as “mutual diagnosis”.  The concept is that the provider alone cannot accurately diagnose a condition because the provider doesn’t know the whole patient.  Conversely the patient knows her or his own body but they are usually not a trained health care practitioner and therefore can’t provide the scientific information necessary to make the diagnosis.  The only way to arrive at a complete diagnosis is to do it together.

This idea not only integrates the patient/client as part of the health care team, but it also puts a shared responsibility on the patient/client for their health care. “People often talk about what isn’t working in the health care system.  We say that it’s not patient-centred; that providers talk at us and not to us. This is part of the issue. But what I’ve come to learn is that people are also complicit in this system. The system has evolved in part because of what patients and clients expect from it. Some people just want to take a pill and forget that they too need to be responsible and accountable for their health care. I believe that the patient should be part of the health care team, but more importantly, they need to take the initiative to be an active team member. No one wants to hear anyone put the onus on the patient, but we all have personal responsibility.”

Maggie explains her perspective further like this: “We want practitioners to take responsibility for knowing their stuff and for consulting with other practitioners when they encounter their own limitations. We want pharmaceutical companies to take responsibility for creating medications that won’t also harm us in the long-run or as a side-effect.  And we want industries to take responsibility for their products and for eliminating their pollution that are or could be detrimental to our health. But we, too, need to take personal responsibility as patients for educating ourselves, for asking questions, for getting copies of our health charts and lab reports to share with our other health care providers, and for doing the work of exercise, eating well, reducing stress and enjoying life.”

As in previous conversations with patients/clients, we often ask them to conceptualize the ideal health care team using a food metaphor.  Maggie provided these thoughts: “I think of soup. Soup is a medley of health promoting ingredients all working together to make a nutritious dish that leaves a good taste in your mouth. Although you can make a recipe for the ultimate soup, the combination of ingredients can be tweaked to work for the taste buds of the soup connoisseur. As well, the soup doesn’t depend on any particular ingredient because it can be made with many different ones. It also doesn’t really have a single ingredient that’s critical. It is the soup connoisseur who is ultimately in charge of the soup and it is she or he who is responsible for making it taste as they want it to.”

Thank you Maggie for working so hard to find your voice; it is a voice that deserves to be heard.

Without a doubt, each person brings with them his or her own voice and experiences. These conversations are reflective of the uniqueness of each person and as a result will all be different.  Names and personal details have been withheld for privacy reasons.

Patient Q has seen the good and the bad of health care teams. When she received a cancer diagnosis in 1992 she saw the best that the system had to offer.  A team of providers were able to work with her to eradicate the cancer. This team was far reaching and included an oncologist, nurses and a psychologist. In Patient Q’s words, “When I was diagnosed with cancer I really felt that I could tap into quite a few health care providers who worked with me on getting better.  Not only did they help heal me physically, but they also considered the emotional impact of a cancer diagnosis. I was extremely grateful to have received such ‘whole’ person care.”

When she was diagnosed with cancer, Patient Q was also living with another life-changing diagnosis, lupus (with which she was diagnosed in 1990). In stark contrast to her experience with her cancer treatment, Patient Q found that there was little support for her as a lupus patient. She had the overwhelming sense that health-care providers were at a loss about what to do.  They were able to mask symptoms with medications but there was no focus on healing. Because with lupus it is difficult to understand why the immune system fights healthy tissue, health care providers were often left to point to a series of variable such as diet, genetics, heredity, UV light, smoking, stress etc., that may or may not have an impact on the treatment. And certainly there was no focus on the emotional impact of a lupus diagnosis. “I struggled with my lupus diagnosis. I wasn’t sure where to go for more help. I didn’t get the answers I wanted and no one really had a handle on what was causing the lupus or how to manage the emotional toll this diagnosis had on me. It felt very different to me than my previous experience.”

Patient Q was fortunate in that her general practitioner (GP) was able to manage her lupus effectively. At this point, however, she is in search of a new GP because her current doctor is retiring. Patient Q has found that in searching for a new doctor, she spends more time talking about her now cured cancer than talking about the lupus she currently manages. “It’s sort of like they find it easier to talk about cancer because they understand it. Lupus is an unknown and few GP’s I’ve met have really wanted to jump into understanding lupus.”  A rheumatologist seems an obvious choice, but specialists in this area are hard to come by, the closest to Patient Q is located several hours away.  Additionally, it can be difficult to book a specialist because his or her schedule is often booked four to five -months in advance.  “This doesn’t help me in my daily life.  I have found that there are just not enough rheumatologists out there.”

For Patient Q there are quite a few uncertainties in terms of her future care. There is a very distinct sense that auto-immune disorder research is not funded well and that few health care providers and researchers are concerned with figuring out the causes and effective treatments for these disorders. Walking into a doctor’s office, one might find numerous pamphlets on a variety of other medical conditions, but few on understanding auto-immune disorders. “It would be really great to have the health care community focus more effort in this area.”

Lupus, along with rheumatoid arthritis and multiple sclerosis are all auto-immune disorders, but the reality is they are distinct conditions that present differently and that require their own treatment. “Those of us with auto-immune disorders all get looped into one group. This is not a good reflection of what these diseases are.”

So, what can be done to help people like Patient Q?

The first step is increased funding and education in auto-immune disorders like lupus. “There have been great strides in cures and research into cancer. I have benefitted from this as a cancer survivor. I do not see the same focus going into research for auto-immune disorders. Right at the education level people aren’t encouraged to focus on these diseases. The training to become a rheumatologist is complicated and involved. Add to this the massive patient load carried by your average rheumatologist and it’s clear why people don’t go into rheumatology. Instead drugs are thrown at us to suppress symptoms but there is no focus on a cure.”

Research, education and acknowledgment of the benefits of a team-based care plan for those with lupus (and other auto-immune disorders) would go a long way to helping patients like Q.  In the absence of such supports, Patient Q has chosen to make the best of her situation by creating her own support network by working hard to raise awareness for these conditions.  She works long volunteer hours with the B.C. Lupus Society who in turn have spent a great deal of time and utilized numerous volunteer hours to make a difference for those with lupus and in supporting rheumatologists.  “I’ve participated and done fund-raising for lupus walks for nearly six years now, and I can tell you that every year there are more people who come out and more donations. This is great to see!”

While a support system that can be provided by the B.C. Lupus Society is critical, the real focus for Patient Q is in greater funding for education and research into auto-immune disorders. She challenges all health-care providers with the following questions. “Why isn’t this type of research getting funded? Why are we so seemingly unconcerned with auto-immune disorders when the reality is as the population ages, more and more people will begin to suffer with them? We need professionals to take on the cause in a team-based care concept so that we can live our lives knowing that the health care system believes that taking care of an auto-immune disease is just as important as someone with cancer.”

Without a doubt, each person brings with them his or her own voice and experiences. These conversations are reflective of the uniqueness of each person and as a result will all be different. 

John Hougan has Parkinson’s disease yet he has more energy than someone half his age.  Diagnosed at 52, he has been able to remain healthy and strong even six years after his initial diagnosis with the help of a solid health care team, family and social supports, coupled with a positive approach to living with and managing the disease. “Six years later I take four pills a day and am on a rigorous exercise regimen. I’ve met people who haven’t had the condition as long who take more daily medication and who have trouble with physical activity.” This is not to say that the process of learning of his Parkinson’s was easy.  “Without a doubt it took me time to get over the initial realization of the impact the condition could have on my family, work, health etc., but at some point it was important to start swimming rather than just treading water.”*

John’s health care team is extensive, well established and heavily incorporates his own personal health plans. When talking about the extended team, John refers to the hidden and the visible teams with which he has worked.

The hidden team is comprised of not only his general practitioner (GP), but also the people who work behind the scenes with the GP, including include lab technicians, nurses and administrators. His visible team is extensive and includes two neurologists (one he works with at a movement disorders clinic and another who monitors a secondary condition), physiotherapists (one of which he sees on an as needed basis for general issues unrelated to his Parkinson’s), a social worker, research study coordinator (having participated in a couple of studies),and a nurse clinician who serves as a point of contact for him. As a result of the Parkinson’s, he has also experienced a REM sleep disorder behaviour which has led to visits to a sleep disorders clinic where he in turn meets with a physician.

While not every member of this team is called upon at every visit, they are available to him as he requires.  “Before I was diagnosed, I was a guy who didn’t take a Tylenol very often. Now I have more doctors and providers than I thought one person ever could!”

A very important part of John’s overall positive approach to health management and self-advocacy is his own Parkinson’s Wellness Recovery PLAN. Broken down he has come up with the following:

• Pleasantly pester health care providers and support people. Lean on them for the information they can provide.
• Wellness. Stay focused on a wellness plan.
• Recreation, rest and recovery.
• Participate, in fundraising activities.
• Learn as much as you can using credible websites and Google.
• Activity is key! Stay active and fit.
• Neurologist and neuroplasticity, your two new friends.*

Moreover, extended from the ‘traditional’ team he also regards his neuroscientist/exercise consultant (this person is located in Tucson Arizona and has helped John to understand that exercise is a critical part of health and wellness management for those that have Parkinson’s disease), researchers that he has worked with who study the genetic components of Parkinson’s, credible websites such as the Michael J. Fox Parkinson’s of Canada websites, and social supports formed both personally and as part of the Parkinson’s Society of British Columbia, as part of his broader collection of resources. “I have this great team of people I work with and as the patient I’m at the centre. I am my health advocate and I’m focused on living well with Parkinson’s.”

By his own account, all of John’s health components work well together. Amongst the health care providers, communication occurs via patient reports that are shared widely with the larger team. On one occasion John was also made aware of provider conversations about his care. When attending his  annual appointment, he was able to bypass some of the standardized  activities they usually have patients do because the providers had met and understood the bigger picture.  “It was clear they talked about me before-hand. I really appreciated that.”

The greatest challenges have come in the area of team communications. These have not been insurmountable, but have proven to be somewhat frustrating.  “I went to the sleep disorder clinic at one point and the sleep doctor prescribed a particular type of medication. Because sleep disorders are a common side-effect of Parkinson’s, my neurologist at the movement disorders clinic had also prescribed something for it but it was different than the medication recommended by the sleep doctor. I asked  the sleep doctor if he had  communicated with  the other doctor and he was honest with me in saying that things got busy and he hadn’t had a chance to talk to him. We figured it out but it was a bit of a flag for me that they weren’t communicating.”

John identifies proximity as a key issue in helping to promote better team communication.  Each of the doctors in the above scenario are separated by physical distance. The process of communicating involves a phone call or some form of written communication.  . As John notes, “I think proximity has a lot to do with how teams communicate. If you’re in a single, clinic location you talk to each other because it’s easy to do so. I think that this type of clinic in which a variety of professionals work together in the same space is critical for good team-based care. The completion of the new Centre for Brain Health at UBC will certainly help with the proximity element.”**

John has also worked extensively with the UBC Health Mentors Program. At present he works with first year medicine, nursing, occupational therapy and speech pathology students.  These students have the opportunity to learn from John about his experiences with the health care system so that they can take those experiences into their own practice. “If I can help them learn from me based on my experiences and they can learn from each other, then it’s a job well done. I firmly believe they’ll take these lessons with them into their practice and this in turn will create a stronger, team-based, system.”

Because it’s common to hear the complaints about the health care system, particularly when the news media is so focused on the bad stories, it’s easy to forget that the system often does function well. “As far as I’m concerned our system works quite well.  You have to ask questions, be your own health advocate and learn a few tricks of the trade. Here’s a tip, always put yourself on the cancellation list for a procedure or appointment. Chances are you’ll get in much faster than if you simply stick with your assigned appointment.”

John, also points out that the business world has been focused around the idea of teamwork for a long time and that it is high time for it to become the norm in health care. When asked to sum up a good health care team using a food metaphor, John compared a working system to a seafood jambalaya because all of the ingredients come together to make something great.

It seems appropriate to summarize this interview with John by ending with what can be regarded as the philosophy that has served him so well these last six years. “I was talking to my wife not too long ago about why I got Parkinson’s.  I have no family history and I’m in good health. I suppose the truth is who cares why I got it.  I have it, and while it wasn’t my first choice, I’m doing really well and I’m living with the disease as opposed to suffering from it. At least it seems to be progressing at a slow pace. You have to stay positive and focus on what you can do both in terms of managing the symptoms and in terms of managing your own care.  I like to say that I drew the lucky unlucky straw.”

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*Taken from Viewpoints, Parkinson Society of British Columbia Newsletter, Fall 2012

John Hougan was featured recently in a Vancouver Sun article about the positive impacts of exercise on Parkinson’s.  Please feel free to read that article by going to, http://www.vancouversun.com/Health/Empowered-Health/Empowered+Health+Fighting+effects+Parkinson+with/8090672/story.html

**The Djavad Mowafaghian Centre for Brain Health is a new facility that unites both patient clinics and research in the areas of neuroscience, neurology, and psychiatry. It will bring together, for the first time under one roof, all the multidisciplinary areas of brain health. The facility will be located at UBC Hospital and is expected to open in 2013.

Without a doubt, each person brings with them his or her own voice and experiences. These conversations are reflective of the uniqueness of each person and as a result will all be different.  Names and personal details have been withheld for privacy reasons.

For a long time, academic articles have been written about the benefits of team-based health care. As a patient, what is your experience with team-based health care?

I’ll start with a positive experience.  When I was diagnosed I had a chance to be part of a clinical trial. My endocrinologist acted quickly to get me into the two-year program. I really enjoyed the experience because I got to work with the endocrinologist and two other doctors who were part of the trial. I found that they really worked with me and answered my questions. I felt like I was held accountable to them and that it was important to really talk to them about what was going on with me. We had a definite personal connection and everything they did in the clinical environment was designed to make the participants feel comfortable.  I found they went out of their way to accommodate me and helped me learn how to manage my illness. The connections I made within the program, which as it turns out for a variety of reasons only lasted over a year or so, are still in-tact. To me this felt like a really good example of patient-centred care.

I have also had the opportunity to be part of the UBC Health Mentors program. I’m about half way through an 18-month program. I meet with students in pre-med, nursing, dentistry and occupational therapy. When we meet we do so for long periods of time and they talk to me and each other, learning how to collaborate better. I like to ask them questions to help this. I ask them if they had been my provider who else would they have referred me to?  It’s fascinating to hear them talk through it.

On the flip side I have found that collaborative practice is not the norm.  When I was first diagnosed my GP brought in the representative from an insulin company who was trying to sell me on their brand of insulin. I felt really unsupported. No mental health professional was offered to me as I was dealing with the diagnosis and it just seemed really lacking to me. I have also found that early on in my diagnosis my dental hygienist did not communicate with my endocrinologist about my care. I think that in an ideal scenario the dental hygienist should have been in communication with my endocrinologist.

Who was part of your health care team?

I have a large number of people who are part of my team. I have a physiotherapist, an endocrinologist and a general practitioner that I work with directly. I also would include a support group that I belong to as part of that health care team. I belong to a group for adults with late onset Type 1 diabetes. They have been an incredible part of my support. It’s very often ten or so people who share stories and who help each other. I don’t know that I would be as good at managing my condition without these people.  They are friendly, open, honest and very often I hear about different techniques and technologies that I might not hear of otherwise.

In what ways did the health care team show you they were working together to help you?

In the clinical trial I participated in, the team had regular meetings where they shared feedback and information.

Could the health care team have done better in your opinion? How?

I think it was a real gap in the system that no mental health professional was recommended to me upon my diagnosis.  The process of my diagnosis was not easy. It was a life-altering experience and in the first two months I read numerous horror stories online. Having someone that I could have talked to even once, or who checked in on me, would have been very helpful.

The reality is this type of team-based care is not the norm in Canada yet.  What are your thoughts on this and how do you think we can help to make this type of care the new normal?

I think in the long term the work done by the UBC Health Mentors Program will go a long way in changing the way health care providers practice.  The challenge here is that the UBC program, for example, is not mandatory. Students can participate and earn extra credit and there are quite a few variables associated with individual faculties as well.  So while I think capturing students is a good thing, there is a long way to go before we will see this make an impact.

In the short-term I think we can look at other countries and how they acknowledge health and well-being. One simple thing to do would be to shorten the work week to four days.  This gives people an extra day to focus on rest and their own well-being.  In some countries, people get a week off from work to focus on health, well-being and relaxation. We can also start thinking about health at a community level.  For many people their closest health centre is a local hospital. But what if community centres also had community health care? These health centres could also focus on community based teams that could meet the needs of the population. If we think about health at the community/neighbourhood level then people will begin to think more about the air they breathe, the food they eat and the quality of their neighbourhood. I think this would also encourage health care practitioners to connect with each other if they were working together to solve the needs of the community.

What food do you think best describes team-based health care?

I think something like a big veggie soup where the patient is the stirring it with a big wooden spoon. The patient in in charge and decides to get things moving and interacting. Alternatively, they can stop stirring and leave the veggies as they are together without being guided.

What else would you like our readers to know?

I’ve recently become a part of an advisory board for Richmond hospital. The goal is to make the hospital more focused on community issues. I get a chance to meet with senior staff and talk to them as a patient and a member of the community. It’s really rewarding.

Without a doubt, each person brings with them his or her own voice and experiences. These conversations are reflective of the uniqueness of each person and as a result will all be different.  Names and personal details have been withheld for privacy reasons.

A few years ago Patient M was taking an antibiotic and had a sudden, severe toxic reaction. The problem came about due to a medication interaction that was missed in part due to human error resulting from overwork, and in part due to a lack of communication amongst the providers they were working with at the time. Rather than dwelling on the error, Patient M chooses to not lay blame while still recognizing the systemic problems that led to the error. “I don’t blame anyone. It was a mistake. However, I feel that had my providers been in better communication it may have been something that could have been caught.”

This sudden and severe reaction led to near total organ failure and ultimately necessitated a liver transplant. Patient M’s transplant group quickly assessed the situation, stabilized the other organs, provided supportive care, and put M on the transplant list.  A liver became available and Patient M was prepped for transplant surgery. “I was so fortunate in that a liver became available to me. I was also tremendously grateful that the care I had was excellent. Although I was a bit out of it for a period of time, the liver failure having affected my brain, I realized that a huge amount of support was provided not only to me but to my family as well in the form of physicians, specialists, nurses and social workers.”

The recovery period from such an extensive procedure is long, arduous and also required a team approach. This team of health care providers of course understood that Patient M needed their expertise and time but were also acutely aware of how the surgery was impacting their family. As Patient M notes, “The social worker took quite a bit of time to talk to my partner and children as well. They were dealing with a huge shock and they too needed someone to care for them as I was healing.”

After months of recovery in hospital, including extensive physical therapy, the necessary supports were provided for the discharge planning.  Patient M continued to visit the clinic regularly, through numerous ups and downs, and was closely and supportively monitored by the clinic staff which also included dietitians and pharmacists. The transplant clinic was and continues to be available to those in their care. The GP’s communicate with the public health clinic, and vice-versa. Emails are answered promptly. Additionally, the charge nurse on the transplant unit or at the hospital is available 24-hours by phone either at the clinic or outside clinic hours.

Patient M has seen the best in team-based care and feels lucky to have seen how a team approach to health care can benefit patients and families dealing with sudden and chronic illnesses. Relationships have been built with health providers helping to ensure that care can be provided even when Patient M is out of town. “I would say that I am quite close with several of the clinic nurses. I can email or call them. When I need it they provide me with some tough love that reminds me to take care of myself. They have helped to make me more accountable for my own health and this includes eating well and exercising more.”

In addition to providing excellent follow up care and lifestyle management, the clinic nurses and social worker host a support group for transplant patients that meets every six weeks.  This group allows transplant patients to share their stories, concerns and questions with a social worker and the nurse. The group also provides learning opportunities around stress reduction, new medications and approaches, financial decision making and more. The doctors also attend the meetings sometimes to answer questions and provide additional support.  “Understanding the issues, having a space to ask questions of others in the same position, and having the opportunity to talk to experts within this group helps all of us comply with treatment and feel empowered in our own care.”

With this perspective, Patient M has some fascinating insights into how the health system could do better. The reality is that while this person received excellent patient and family-centred care, many people are not fortunate enough to receive this level of care. As researchers, educators and learners we are all too familiar with the stories of people falling through the cracks and failing to achieve positive health outcomes as a result of siloed health care.

Initially Patient M identifies a gap in the supports provided to general practitioners.  The GP is often the first person people see.  Very often this person is over-worked and has limited time with each patient as they are expected to see more and more patients each day. While they may be excellent physicians their time is maxed and they often do not have the necessary supports to manage their heavy case-loads. Patient M believes health care dollars would be well spent supporting GPs. “I would love to see more clinics where the doctors have support from other physicians and nurses in the practice. I think supporting GPs would mean better opportunities for the doctor to spend more time with the patients, to better assess, to not be so rushed.”  In addition, if better electronic records were implemented they too could help support the GP by ensuring that the patient’s information is readily accessible, that interactions are more easily identified, and that tests aren’t so readily duplicated.

Another critical element to focus on if we are to attempt to figure out how the system can better serve patients and clients is the way in which health care providers interact with each other as professionals. In any given situation there will likely be a leader. In surgery for example, the anesthesiologist and the surgeon are the leaders, but when it comes to discharge and the emotional impact of illness the social worker may be the lead. Because Patient M has had the opportunity to see how a team approach to health care can work so well, they truly understand the necessity of respect amongst team members.

“When I was in hospital at one point I had a swollen arm. The nurse noticed it but initially the doctor didn’t feel it was anything problematic. The nurse had an instinct something was wrong and persisted. They did find something wrong that could be corrected. In this case the nurse was empowered to push back but I’ve seen nurses who are not. I was fortunate because the nurse persisted and the doctor ultimately respected her opinion enough to listen to her. ” True patient-centred care comes from each of the professions respecting the expertise that all members of the health care team provide.

Interprofessional education and practice and collaborative patient-centred care are big concepts that challenge the way in which health care is typically provided.  These concepts introduce us to a more efficient and person focused way of providing quality health care. These ideas can seem complex and one way conceptualize them is to think about the ideal health care team as a food. When asked to describe such a team using this food metaphor, Patient M chose a curry.  “The ideal health care team is like a good curry on some kind of base. There are lots of ingredients in a curry but they all work together to contribute to the overall flavour. It’s a versatile dish as well because it’s flexible to an extent based on what you have on hand. For me I see the base, like rice, as the community and family and the curry on top as the health care team comprised of many different, yet versatile, parts. When you eat it, you mix it up so the pieces are working together. The other thing about a good curry is that it’s not easy to assemble, but when you do it right, it’s so delicious.”

Without a doubt, each person brings with them his or her own voice and experiences. These conversations are reflective of the uniqueness of each person and as a result will all be different.  Names and personal details have been withheld for privacy reasons.

The conversation with Client C showcases numerous highlights of team-based, collaborative, care. More significantly this conversation highlighted the dedication, commitment and passion of Client C in advocating for his/her own health.  At one point, Client C referred to themself as the “captain of their health team”.  What stood out in this conversation was how much Client C has done to understand and engage members of the team about their own health.  He/she has acted as a partner in the management of their own health care challenges by being at the centre of the health care team, by understanding that while experts can offer expertise it is the person at the centre of care who is integral if we want to measure how successful the team has been.  Kudos to Client C for paying their experiences forward by dedicating numerous hours to helping to empower others to take charge of their health by serving as a mentor and voice to those who can’t advocate for themselves. Thank you to Client C for taking the time to share your experiences and wisdom. 

As a client, what are your experiences with team-based health care?

Currently I do work with a health care team. I have four chronic conditions all of which need to be managed simultaneously. I can say with honesty that I have one of the best teams working with me now. They work together for my benefit and I love to see how they interact with each other.

When I was initially diagnosed I started working with a specialist. He was the first person I saw and the first person who helped me understand my diagnosis. I also had a family doctor with whom I had been working.  I am always delighted that these two people are in excellent contact. When I visit the specialist he takes notes and shares them with my family doctor so she is aware of everything that has been happening.   For me, as a client, it is wonderful to see that when I go into my family doctor, she has all the notes!  I have found this to be fabulous but do understand from my community outreach and as a result of various other programs I am involved in, that this is not the norm for many people.

As another example, when I was diagnosed I entered into a six-eight week program for people with my diagnosis who had moderate to severe symptoms. As a part of this program I was seen by a specialist, physiotherapist, occupational therapist, social worker and a nurse.  For the duration of my time in the program, these people met each week to discuss my case. Because what I have is chronic it’s episodic and as a result needs to be managed during flare ups. I found that this team not only understood the nature of my condition, but that they saw me as a whole person. They worked with me to develop programs and treatments that would work for me.

I had one on one sessions with the nurse who understood my own personal feelings about medication and how that might impact my treatment. As an aside, some time before this I had been working with a naturopathic doctor. While I no longer see this person, I have taken the treatments and ideas I learned into this new diagnosis. I was so impressed by the nurse who was not only open to hearing what my naturopath had to say, but who was also willing to incorporate complementary and alternative treatments into my regimen. This nurse was able to allay my fears and went over everything I needed to know.  I can’t thank her enough and am eternally grateful to her. She helped me make informed and wise decisions. I had spent so much time online reading about my conditions and treatments and brought a huge amount of information I needed to unpack. This nurse, along with other members of the team, really helped me to understand what I had been reading and really listened to what I had to say.

I can also tell you that I worked with a social worker who really understood the psychological impact of my condition. I’m a happy and optimistic person by nature and while I wouldn’t say I ever got depressed, I did experience mood and personality changes as a result of my diagnosis. It was hard for me because I really removed myself from the world, and this is completely against my nature. The social worker helped me to understand the stages of grief I was going through. It was very eye-opening for me and really inspired me to reach out to others facing a life-changing diagnosis. My team reaching out to me, really made me want to reach out to others.

I should also say that I’ve worked with wonderful pharmacists who have made recommendations to me based on complementary and alternative medicine as well because they knew I was open to this and understood that homeopathic medicine is part of what I am as well.  I have worked with the dentist, optometrist, ophthalmologist and a specialist in periodontics all of whom are part of this bigger team. Each of these people has impacted me in positive and beneficial ways.

You’ve had a wonderful opportunity to benefit from numerous health care professionals, all of whom from the sounds of it have really made a positive impact on your health. If you were to try to take the chief lesson out of this experience what would that be?

I am the captain of my team. It is up to me to help ensure that my team has the information they need to make informed decisions about me. When the program I mentioned before ended, I took on the management of my team. I coordinated with members of the team to make sure that I still got the benefit of that team-based approach.  I understand that each of these people is busy and that like all of us, they’re human and have busy days and busy times. I figured if I could help by staying on top things and by sharing information then that was good for me and my health.

I also want to talk a bit about something I learned from the social worker who helped me through the emotional impact of my diagnosis. She taught me that it was okay to ask for help, to rely on my friends and family as I learned to deal with what had become my new normal.  I learned that I needed to utilize the resources I had in my sphere of influence.  Your support system is also part of that health-care team! They’re part of the long-term journey. It’s not just the health providers, it’s friends and family too.

I’m still team captain and as such coordinate the information but the health professionals and my friends and family are all part of that team.

The reality is this type of team-based care is not the norm in Canada yet. You have taken charge of your health and have coordinated this team of yours as team captain. What about those who can’t do that and how do we make your experience the norm in this country?  

This is a hard question and it’s hard to think about the experiences of others because we’re all different. That said I have seen in my volunteer work areas that people do struggle with.  I think cultural issues are a barrier, English as a second language can be a barrier and to an extent personality type is an issue. Some people are more introverted and less inclined to ask questions or to engage people. In the work I do I try to fill in where I can. Maybe it’s helping fill in a form, or helping someone go online to find resources about their condition. It could be writing questions down for them. I might help someone seek out a referral to another health care provider.  I don’t say this to blow my own horn but I think that having people in advocacy roles like this would be of tremendous benefit to the system. If every person knew they had access to someone who could help them navigate through things, it would make a world of difference.  I know funding and cost is at the root of why this is difficult and until we can think through funding, greater supports for the volunteers who do advocate for others would also be helpful.

I do think though that health care is evolving. I’ve had the pleasure of working with many students and other young people who are just starting their careers. I love their enthusiasm and their desire to communicate well.  I think that the focus on educating health care providers to treat the whole patient as part of a bigger team is a good thing. I see the hope for the future!

Now for a much less serious question, what food do you think best describes team-based health care?

I immediately thought of a mandarin orange. There are many segments but they all stay together. There is a centre of the orange, like a client or patient, and the segments wrap around it and work together and contribute to the whole structure.

Without a doubt, each person brings with them his or her own voice and experiences. These interviews are reflective of the uniqueness of each person and as a result will all be different.  Names and personal details have been withheld for privacy reasons.

This interview focuses on the experiences of Patient A.  We offer sincere thanks to Patient A for their time and thoughts, insights and openness.  It was truly a pleasure speaking with you.

Numerous academic articles have been written about the benefits of team-based health care for both the health care professionals but also the patients and clients.  Our readers would like to hear, from that patient/client perspective what, if any, experiences you have had with team-based care.

From my perspective, the team based approach is in its infancy and the old guard is still resisting it. I don’t see much buy-in. When I’m talking to my doctors and specialists they aren’t always willing to go to the next level and include other health professionals. I have heard about the team based approach and I think it’s a wonderful idea. What I see though is bureaucratic inertia that keeps teams from forming.

I would love for the different specialties to not be so siloed. The truth is I get a sense that there’s a fiefdom to break through and while I think the team approach would work, the fiefdom gets in the way.

The best example I can give about this fiefdom is how my diagnosis was handled. I felt like a hot potato that was passed around from professional to professional.  Lots of people saw me and talked to me but I never got the sense that they were seeing me as a whole patient. I never felt that there was any cohesion to what they were telling me. I wanted my doctor to be the central point for all of the information I was receiving. I wanted each cog to provide the necessary information to the doctor so that I could get my information in a way that was easy to receive and work through. As long as each person was doing their part, things worked fine. As soon as one didn’t provide the necessary information, things fell apart.  I’ve had to work to understand the system as it currently exists and have learned how to function within in but as it stands now, it is a long way from team-based care.

So as you’re noting and as research has shown, the reality is this type of team-based care is not the norm in Canada yet.  How do we change this?

I do see hope for making things better. However, I think that there is no such thing as the perfect team based approach. I think what’s required is a generational shift and that type of shift takes time. People do not change quickly, particularly those that are 20 or 30 years into their profession. I do think the efforts made at the level of early education do help.  Doing training in team-based care will bring new ideas into the professions. We have to remember though that there has to be a consistent push to keep that team-based approach going. I’ve noticed in medicine in particular that things can change but it’s only that incremental shift, change happens if they have to do it. So I say keep pushing from the bottom, nudge it along bit by bit but be patient because the goal will be a long time in coming. We need to live with the slow nature of the change.

Now for a much less serious question that I think helps to conceptualize this work in a way that everyone can relate to.  What food do you think best describes team-based health care as it works currently and as it should work, when the team functions as a team?

I think a dish like jambalaya shows how the team should function. You have a collection of ingredients that work together to create something great. Each ingredient has its own function but together they’re even better.  The reality is the team probably functions like a traditional dinner of sorts where you have meat, vegetables and starch on the plate.  They have their space on the plate and if they mix it’s ok but by and large they don’t mix. They’re separate pieces.

What are you final thoughts or questions for our readers?

I’m curious how you check whether or not there is integration into these teams? In five years, how will you go back and find out if you’ve progressed?

I also think that there has to be some way to look for the ways in which this team based approach is going to make a difference to the professional. To the professional the team can seem unwieldy. Bringing in different perspectives is a good thing because it allows for more eyes on the problem, different questions and a different way of looking at the problem. But if someone on the team feels that it’s burdensome to listen to a variety of people then it’s not going to work.  So how do you articulate to each of the people on the team that this approach is a good one? How does that happen and how do you ensure it keeps happening?

We encourage our readers to respond to these questions! Please use the comments below to sound off.