Sunnybrook’s gynecologic surgery team treats ‘last resort’ cases with minimally invasive surgery.

Having suffered from severe endometriosis since the age of 14, Ashley Adams-Jones held out little hope that the pain and fertility problems that plagued her would ever abate.

Numerous consultations with doctors led to various treatments, ranging from the removal of one of her fallopian tubes and an ovary to repeated operations to cauterize or burn some of the endometrial tissue twisted around her reproductive organs.

She even had her gallbladder taken out, with the suggestion that that would make things better. It didn’t.

“It was really just a cycle of pain,” recalls Ashley, now 30, who had become increasingly frustrated and was even turned away by hospitals unable to deal with the severity of the lifelong condition.

What made the difference, finally, was when she travelled in early 2015 from her home in Parry Sound, Ont., to Sunnybrook and participated in its gynecologic surgical program. There she underwent a laser procedure – via keyhole surgery, also known as laparoscopy, a type of minimally invasive surgery – in which the problematic endometrial tissue was removed via four tiny incisions in her abdomen under the direction of Dr. Jamie Kroft, one of Sunnybrook’s minimally invasive gynecology surgeons.

“Patients with endometriosis wait an average of nine to 10 years just to be diagnosed; then, it often takes even longer to receive adequate treatment,” says Dr. Kroft.

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“It was a game changer”

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“It was a game changer. I had pain relief almost immediately,” says Ashley. Even more important is that the treatment cleared the blockage caused by the disease in her remaining fallopian tube and ovary, allowing her to become pregnant with her third child, which she delivered in the nurturing and comforting environment at Sunnybrook.

“I couldn’t say enough about the care I got there. They had every resource that I needed.”

Sunnybrook uses minimally invasive surgical techniques for complex gynecologic problems such as stage 4 endometriosis, difficult hysterectomies, large fibroids, benign uterine masses, severe pelvic organ prolapse and bladder dysfunction.

The hospital’s gynecologic minimally invasive surgery program – one of only two in Canada accredited by the American Association of Gynecologic Laparoscopists – tends to some of the hardest-to-treat cases across the spectrum of reproductive health issues and at every age, ranging from women who are trying to conceive to those in menopause and postmenopause.

“We see a lot of ‘last-resort’ patients,” notes Dr. Patricia Lee, head of Sunnybrook’s Division of Gynecologic Surgery. She is a urogynecologist, a subspecialty that looks after women with bladder problems (such as urinary incontinence, voiding dysfunction), pelvic organ prolapse and other issues associated with weakness of the pelvic floor muscles.

Such conditions are common as women age and can seriously affect their enjoyment of life. Although, Dr. Lee points out, many aren’t quick to seek help. “A lot of people don’t want to talk about those ‘private-area’ issues. And they don’t know where to turn.”

The women’s health program at Sunnybrook offers such a place, with its 20-year history of laparoscopic procedures performed by an elite, cohesive team of gynecologists working alongside experts in related specialty fields such as urology and general surgery.

Mahjabeen Ali, who had a long history of gynaecologic problems, was referred to Sunnybrook and treated for a benign mass and cyst with minimally invasive surgery. (Photo by Kevin Van Paassen).

Patients referred to Sunnybrook often have a lengthy history of previous gynecologic treatments and additional medical issues. Dr. Grace Liu, a specialist in minimally invasive management of endometriosis and large fibroids, notes that over the last several years, surgical cases are becoming increasingly difficult as medications improve and patients now opt for surgery only after medical therapy has failed. Previous surgeries can result in even more scarring and those with additional medical conditions, such as diabetes, cardiac conditions and obesity, can make intricate procedures even more complex.

“We are often the place where patients come after having been given multiple opinions that their surgery cannot be performed laparoscopically,” says Dr. Liu. The vast majority of such difficult cases are dealt with minimally invasively, with a strong emphasis on organ preservation.

Minimally invasive surgery offers the patient the benefit of a quicker recovery, reducing the pain, scarring and risks of complications compared with traditional open surgical procedures. It also decreases the associated health-care costs of surgery through less time in hospital.

“You’re in and out of the hospital on the same day,” says Mahjabeen Ali, 60, who, in March, underwent minimally invasive surgery by Dr. Rose Kung, one of Sunnybrook’s senior gynecologic surgeons, to remove a mass from one of her ovaries.

Mahjabeen has a long history of gynecologic issues. Years ago, she had difficulty conceiving and went through special procedures to have her two sons. This time, she put off seeing a doctor, ignoring months of lethargy that was uncharacteristic for her, as well as the ever-sharper pains in her abdomen.

“It became so excruciating that I threw up. I lived on painkillers for a while,” she remembers. Even worse, she worried all the time that she had cancer, but she still couldn’t bring herself to seek help. “We women go through so much and are often too scared to find out things.”

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“They had every resource that I needed.”

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Eventually, she went to her family physician and then had an ultrasound, which revealed the ovarian mass, as well as a cyst on the other ovary. Then, rather than wait almost two months for further testing at her local hospital, Mahjabeen was referred to Sunnybrook. A week after her first visit there, the keyhole surgery was performed to remove the cyst and the mass, which proved to be benign.

“They dealt with it right away,” she says. “It’s great to have it out. I feel better, I feel energetic.” She recalls too that for patients with what she calls “female problems,” the atmosphere at Sunnybrook is warm and personalized.

“They see how scared and sensitive you are, how shy you are about your body and that you want it covered…. The surgery team is fantastic and everything is explained to you,” says Mahjabeen.

Dr. Lee has heard this before. Minimally invasive surgical procedures can be “life-changing,” providing welcome relief for patients who’ve had conditions like debilitating pelvic pain or even urinary incontinence. “No one dies of a leaky bladder, but it has a significant impact on quality of life,” says Dr. Lee. “To be able to help somebody with that problem is amazing.”

For many women, getting help from the gynecologic surgical program at Sunnybrook also means an end to a long search for answers. “They get bounced around from doctor to doctor,” Dr. Kung points out. “But if they happen to land with someone who is knowledgeable, they may actually benefit from treatment.”

Also of note is how Sunnybrook is offering ambitious postgraduate programs to teach gynecologists across Ontario and beyond, including urogynecology and minimally invasive surgery fellowship training.

Dr. Kung was instrumental in establishing these training programs. In fact, Sunnybrook surgeons often get referrals from other University of Toronto teaching centres for cases that cannot be done there.

“We’re teaching the teachers,” Dr. Kung says. “There will be more access available to women in terms of minimally invasive surgery for complex gynecologic problems.”

The group of gynecologists at Sunnybrook are especially committed to minimally invasive surgical techniques, she reports, and they work as a team to allow for more complex and challenging laparoscopic procedures.

Ashley, for one, can’t praise enough the “very take-charge” surgical team that took care of her at Sunnybrook and their strong spirit of collaboration. For example, she recalls how, when complications in her urinary tract developed during surgery, a urologist came in right away. “They all really work together.”

Her rapid recovery and the significantly reduced pain following the surgery, as well as the fact that the incisions on her abdomen were so small, all made a big positive difference to her well-being. “I can’t even see my scars!” she says.

Ashley expects that the effort to control her endometriosis will continue into her menopausal years. Meanwhile, she notices that it really helps to stay fit and eat healthy, which keeps her hormones in check.

And she’s relieved after so many years of pain and worry to find there are effective, minimally invasive ways at Sunnybrook to treat her condition. She’s also grateful for the knowledge, expertise and sensitivity of the doctors she’s met there.

“It’s a comforting feeling, knowing you’re well taken care of and they know what they’re doing in this specialized area,” says Ashley.

The post Keyhole surgery: a ‘game changer’ for complex gynecologic cases appeared first on Your Health Matters.

When Janice Weintraub was called in for more tests after her first-ever mammogram in 2015, she actually wasn’t too worried.

“I have no family history of breast cancer,” says Janice. “I just figured they’d do another test and I’d be given the all-clear.”

So when the then 50-year-old mother of two heard the words “breast cancer,” she was shocked. “I was told there was a suspicion of DCIS,” Janice says, “but that stage 1 breast cancer couldn’t be ruled out.”

DCIS – ductal carcinoma in situ – is early-stage, or stage 0, breast cancer. It’s a lesion in the breast that hasn’t invaded the surrounding tissue. While women with DCIS have a very low risk of dying of breast cancer, some women with DCIS are at a higher risk of developing invasive breast cancer in the future, notes Dr. Eileen Rakovitch, medical director of the Louise Temerty Breast Cancer Centre, head of Sunnybrook Odette Cancer Centre’s Breast Site Group, and the LC Campbell Breast Cancer Research Chair.

“We can’t accurately identify which women are indeed at high risk and will get breast cancer, and which women will not,” says Dr. Rakovitch. “So right now, we treat everyone.”

Breast screening programs mean that DCIS is being spotted in some women who may never otherwise realize they have the disease, have any symptoms or ever develop invasive, life-threatening breast cancer.

“On the other hand, the screening means that for some women, we are so lucky to find it and treat it at this stage before it becomes aggressive,” she says.

The challenge is in finding a balance between over-treatment and under-treatment. “We need to move away from a one-size-fits-all approach,” she adds. Currently, most women are treated with lumpectomy followed by radiation treatment.

Janice had two surgeries at another hospital to remove the suspicious tissue in her breasts. She then met with a radiation oncologist to plan for radiation treatment.

“To undergo radiation or not was a huge decision for me,” Janice says. “The concept of putting my system through the exposure and the side effects was very worrisome. Had it been a higher-stage cancer, I would have done anything to give me hope. But with DCIS, we didn’t know how fast or even if these atypical cells would become harmful.”

Breast pathologist Dr. Sharon Nofech-Mozes at Sunnybrook does her best to help personalize treatment. She examines a piece of every breast tissue that is removed from patients in order to better understand each individual case and help oncologists determine how best to treat each patient.

Under the microscope, she conducts a thorough examination that includes looking at the size of the tumour, how completely it was removed, and whether it has invaded tissue beyond the milk ducts.

After her investigation, oncologists may recommend additional surgery, radiation or the drug tamoxifen.

“I can look at two cases and they can look awfully similar,” Dr. Nofech-Mozes says. “But they might have other features on a genetic level that cannot be found in a regular tissue examination.”

Dr. Eileen Rakovitch’s research aims to balance the over-treatment of non-aggressive breast cancers and the under-treatment of cancer that could become aggressive. (Photograph by Kevin Van Paassen)

Now Dr. Nofech-Mozes and Dr. Rakovitch have something new in their toolbox to help them better understand who is at high risk of invasive cancer and would benefit from radiation, and whose risk is low.

Going beyond what can be viewed under a microscope, the Oncotype DX Breast DCIS Score test looks at 12 genes to see whether they are “turned on or off,” Dr. Nofech-Mozes says.

“For example, there are genes involved in cell proliferation – how fast a cell multiplies. The Oncotype DCIS Score looks for genes like these and then uses a formula to calculate a woman’s risk of recurrence,” she explains. “This is an additional layer of information that is being introduced.”

Janice did some digging online and found Sunnybrook’s research into the Oncotype DCIS Score. Her radiation oncologist encouraged her to reach out to Dr. Rakovitch, and Janice was accepted into the DUCHESS clinical trial at Sunnybrook, which measures the Oncotype DCIS Score in eligible women with DCIS. When her Oncotype DCIS Score came back low, she decided not to undergo radiation.

“The risk score helped inform the discussions with my partner,” she says. “He is a real numbers person and I needed something rational to hang the emotion on. And it really worked both ways. Had the score come back high, I couldn’t have stood in the face of science and rejected that radiation treatment. I wouldn’t have.”

That’s the wonderful thing about moving DCIS and breast cancer into the genome era, Dr. Rakovitch says.

“It’s individualized, personalized medicine. Instead of using broad estimates, a woman’s own DCIS is sampled and the expression of those genes is measured. We get her individual estimate of recurrence with or without radiation treatment.

“For example, let’s say her risk of recurrence is 9 per cent. With radiation, the risk might be reduced to 6 per cent. Many women and physicians say, ‘That’s such a small benefit; it’s not worth it.’ And so, they more confidently omit radiation treatment. For other women, the score identifies that they will benefit greatly from radiation and lessen their long-term risk.”

The DUCHESS trial is also examining whether the Oncotype DCIS Score affected a woman’s treatment plan or eased the decision-making process.

For Janice, who now undergoes yearly mammograms, that’s a yes. “I don’t know how I could have turned to my kids and said, ‘I’m not going to do the radiation even though the doctor says to [do it]’ if I didn’t have something concrete and rational to explain why. The Oncotype DCIS Score looked at my own genetics. That put me in a very different headspace for making decisions.”

The post Innovative test helps to determine risk for women with early-stage breast cancer appeared first on Your Health Matters.

“I just wasn’t satisfied with that,” recalls Steve, who is 46. “I knew something else was wrong.”

After several more tests and visits to specialists, Steve recalls getting a call from his doctor while driving home one rainy night and being told he had two tumours on his liver.

“They were neuroendocrine tumours [NETs], and the hormones secreted from the tumours had already started doing damage to my heart.”

NETs are very rare abnormal growths in the neuroendocrine cells. These cancers are usually slow-growing and can affect any organ, but most commonly occur in the lungs, gastrointestinal tract or pancreas.

In Ontario, about 600 people are diagnosed with NETs each year.

“Endocrine cells are present in most of our organs and secrete different types of hormones, most commonly serotonin,” says Dr. Julie Hallet, a surgical oncologist at Sunnybrook. “That’s why NETs have two unique characteristics: slow cancer growth and hormonal secretions.”

If left undiagnosed, the hormones released by the tumours can wreak havoc on the body. For Steve, that meant his right-side heart valves were damaged and having trouble functioning.

After numerous tests and visits to specialists, Steve Waters (seated) was diagnosed with NETs. His surgical oncologist at Sunnybrook, Dr. Julie Hallet (right), is conducting a long-term research study of the mysterious disease. (Photo by Kevin Van Paassen)

He was referred to the Susan Leslie Clinic for Neuroendocrine Tumours at Sunnybrook’s Odette Cancer Centre. The clinic, established in June 2009, brings together a multidisciplinary team of experts to simultaneously assess and care for patients like Steve. It’s the only clinic of its kind in Canada and sees more than 1,000 new and follow-up patients every year.

After an appointment with medical oncologist and NETs clinic co-founder Dr. Simron Singh, Steve’s first major treatment was having his heart valves replaced by Dr. Gideon Cohen in the Schulich Heart Program. For Steve, it was the first of many surgeries.

But Steve counts himself as one of the lucky ones; his journey to diagnosis and treatment took just a few months. For other people suffering the effects of NETs, it takes much, much longer.

Jeanne Yee was an active 37-year-old massage therapist when she began not feeling well in 2000.

“I lost weight, had heart palpitations, was vomiting, sweating and flushing,” Jeanne, now 53, recalls. “I had consistent and excruciating abdominal pain, which was made worse with eating, so I ate very little.”

For more than a decade, she suffered. She took a leave of absence from work, lost more than 30 pounds from her already slight frame and visited many doctors. She was diagnosed with a variety of ailments, including irritable bowel syndrome, menopause, food allergies and a stomach bug believed to have been picked up on a trip to China.

Finally, an internal specialist in 2014 referred her to Sunnybrook: Jeanne had NETs.

“I had never heard of NETs and I actually thought the specialist was pulling my leg,” Jeanne admits. Soon after her referral, she had major life-saving surgery to remove three primary tumours from her small intestine.

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“In medical school, we are taught, ‘When you hear hoofbeats, think horses,’ meaning think straight and consider the obvious diagnosis. But with NETs, it’s more like ‘When you hear hoofbeats, think zebras.’ ”

– Dr. Julie Hallet, surgical oncologist

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According to Dr. Hallet, it’s not uncommon for NETs to go undiagnosed for years. “The signs and symptoms are very non-specific. There’s often diarrhea or some facial flushing or wheezing, but those things can happen with so many diseases,” Dr. Hallet says. “Often, patients will seek out health care for a very long time and get labelled with a bunch of other diagnoses that are not NETs, most commonly asthma or irritable bowel syndrome.”

Another reason diagnosis can take so long is that these rare tumours just aren’t on the radar.

“Even as health-care providers, we just don’t think about NETs. So you can’t consider something you don’t know about when seeking to diagnose someone,” Dr. Hallet explains. “In medical school, we are taught, ‘When you hear hoofbeats, think horses,’ meaning think straight and consider the obvious diagnosis. But with NETs, it’s more like ‘When you hear hoofbeats, think zebras.’ ”

Dr. Hallet and the NETs team at Sunnybrook are currently conducting a long-term research study to help better understand this mysterious disease. Even though the tumours are rare, the number of people living with NETs is increasing, as patients with these kinds of tumours can, with careful care management, live for a long time.

“We are focusing on finding enablers to more timely diagnoses,” Dr. Hallet says. “We are examining the data of 6,000 patients with NETs in Ontario and asking: ‘How were they eventually diagnosed? What path led to diagnosis and treatment? Does this vary across regions?’ From there, we’re hopeful we can identify what works and ways we can improve diagnosis and treatment.”

Jeanne Yee is being treated for NETs at the Susan Leslie Clinic for Neuroendocrine Tumours at the Odette Cancer Centre. (Photo by Kevin Van Paassen)

Because this type of tumour is so rare, there’s no standard pathway of care, Dr. Hallet points out. Contributing to that variance in treatment is the fact that each tumour is truly unique; the tumours grow at different rates, release different hormones and may or may not be responsive to chemotherapy. Surgery, interventional radiology and anti-hormone injections are all options.

“Treatment really needs to be personalized for each tumour, so that we can control growth and hormonal secretion,” she says. “But what is the right treatment at which point in a patient’s journey? How do we sequence the treatments? That’s really the challenge. This is a marathon, not a sprint.”

Dr. Hallet says Sunnybrook’s NETs clinic aims to raise awareness of the disease and improve access to care at Sunnybrook and beyond.

“We work with community partners, so patients may come here for initial assessment and treatment recommendations, but then they can undergo that treatment at their home hospital. Eventually, if there are progressions or concerns or questions, we can revisit and reassess.”

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“I pray a little longer, meditate a little longer, breathe deeper, smile more and laugh a lot.“

– Jeanne Yee, NETS patient

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Steve has attended conferences in the U.S. and made contact with other NETs patients from around the world. He has heard first-hand how challenging it can be to access specialized treatment in some smaller health-care centres.

“I know that having the multidisciplinary care team [at Sunnybrook] really increases my chance of survival. I am so grateful to have expertise in my corner.”

Living with this chronic illness is challenging, Steve says, and he can feel his health worsening. But he also has good days and was able to travel to California this year for a vacation. “Cancer is such a generalized term and it’s hard to explain to people how I am doing. I can explain it in day-to-day functioning – I am able to make my daughter’s lunches and put dinner on the table.”

Jeanne retired from her physically demanding job as a massage therapist. She receives monthly anti-hormone injections. Fatigue is an ongoing challenge, as is the knowledge that the cancer will likely progress.

“But for now, the clinic keeps a close watch on me, so I don’t worry about the future,” she says. “I only care about my quality of life. I savour the time with my family and friends. I still cycle on sunny days, I go for walks and run a little. I pray a little longer, meditate a little longer, breathe deeper, smile more and laugh a lot.”

The post Inventing future care for NETs, a hard-to-detect, hard-to-treat cancer appeared first on Your Health Matters.

We sat down with Andy to ask him some questions that would reveal the person behind the title of President and CEO.

Which living person do you most admire?

I think there is a lot that can be learned from team sports, so I really admire some of the great Canadian hockey players, like Wayne Gretzky and Sidney Crosby. Although very skilled individually, they exude great pride in the ways they elevate and acknowledge their teams.

Which words or phrases do you most overuse?

Sports metaphors, like “pass the puck” and “health care is a team sport.”

What or who is the greatest love of your life?

My family, especially my wife and kids. They provide me with constant and immediate perspective as to why we do what we do in health care. I also love the city of Toronto and all that it has become and the great future ahead of it.

Which talent would you most like to have?

To be able to play the piano.

What do you consider your greatest achievement?

Balancing (at least trying to!) a great career in health care with being a great father and husband.

What is your most treasured possession?

Hard-copy photographs with dates recorded on the back to mark moments and memories. I have a great picture in my office of my wife and me in the operating room. It was taken on the day we met in 1993 by my senior resident at the time.

What is your most distinctive characteristic?

Enthusiasm and optimism!

What do you most value in your friends?

The fact that, even after time apart, we are able to pick up right where we left off. I value exuberance and a buoyant spirit.

Who are your favourite writers?

I read a lot of Charles Dickens’s work when I was young – books like Oliver Twist and Great Expectations. My mother is English and she used to draw connections to some of the characters in those books a fair amount, as I recall.

Who is your favourite fictional hero?

Captain James T. Kirk from Star Trek. He is a really smooth heroic figure – and a great team player!

Which historical figure do you most identify with?

I don’t identify [with him] per se, but I read and know a lot about Winston Churchill. I am especially fascinated by the events of the spring of 1940. I am generally interested in historical political leaders, including Abraham Lincoln and Theodore Roosevelt.

What is it that you most dislike?

Wasting time at either work or play. We are only given so many hours in a day and I believe in maximizing those 24 hours.

What is your greatest regret?

Had I got orthotics for my running shoes, it might have spared me the major ankle surgery I had in 2012. It stopped me from running. Nonetheless, I am able to walk a lot and really enjoy that activity.

Thoughts on your new position and what you envision for Sunnybrook’s future?

Sunnybrook is in a terrific position for future success. We’re building on a solid foundation that we’ve created over the past few years and we’re achieving our vision, which is inventing the future of health care. We’re doing this today. It’s not science fiction. With the help of our generous community and support from government, our teams are revolutionizing care and it’s my job to continue to make that happen.

We are changing how care is delivered. I am a surgeon by training, and in the not-too-distant future, we won’t be making incisions in patients anymore. We’ll be using ultrasound and other technology to provide cures that were considered impossible not long ago. We have our challenges like any hospital, but we’re overcoming them with an incredible team. I’m excited to be in this role and to be at the helm of something great.

What is your motto?

Give it 100 per cent, whatever you do. Be “all in”!

The post Q&A With Dr. Andy Smith, Sunnybrook’s President & CEO appeared first on Your Health Matters.

They awaken to stiff joints and spend their days fighting pain as they go through the usual motions of living.

An estimated 4.6 million Canadians suffer from osteoarthritis, a degenerative joint disease – and the most common form of arthritis – that starts with the breakdown of the cartilage that protects joints and keeps the bones from rubbing against each other. This chronic disease results in joint pain, stiffness and swelling, often becomes disabling, and is more prevalent among older people.

The implications are troubling for an aging country like Canada, where there are now more people over the age of 65 than there are children and where seniors will account for two out of 10 residents by 2024.

A number of studies in recent years have highlighted the growing prevalence of osteoarthritis among Canadians, and the greater burden this places on the country’s health-care system.

One study published in 2011 by the Arthritis Alliance of Canada – in a report entitled “The Impact of Arthritis in Canada: Today and Over the Next 30 Years” – predicts that by 2040, one in four Canadians will have osteoarthritis. With a new diagnosis of osteoarthritis every 60 seconds, almost 30 per cent of Canadian workers will have difficulty working because of the disease, the study’s authors wrote.

“Now more than ever, we need to look at how we can best serve the needs of Canadians with osteoarthritis in ways that will also be more optimal for the health-care system,” says Dr. John Murnaghan, interim medical director of the Holland Centre, part of Sunnybrook’s Holland Musculoskeletal Program.

Sunnybrook is leading the way in this effort. About 12 years ago, the Holland Centre introduced an innovative model of care for hip and knee arthritis. As part of its Hip and Knee Arthritis program, the centre pioneered a Central Intake and Assessment process that today continues to improve access and quality of care. Two patients from the Centre share their stories.

For Mary Lou Nawrocki, it was a great relief to learn she didn’t need joint replacement surgery. (Photograph by Kevin Van Paassen)

Mary Lou Nawrocki: non-surgical treatment

Life changed the day Mary Lou Nawrocki’s knees buckled as she was walking about with a friend. Diagnosed shortly after with knee osteoarthritis, the retired elementary- school teacher could no longer take long walks or exercise because of the pain and stiffness in her legs. She became less active and gained weight, which put more pressure on her knees and added to her pain.

“I tried physiotherapy and then a chiropractor, but nothing worked,” recalls Mary Lou, who is 67 and lives in Toronto with her husband. “The osteoarthritis would just flare up and my knees would swell.”

Her life changed again last year, this time for the better, when her doctor sent her to the Holland Centre. Within the month of getting a referral, Mary Lou walked into the Centre’s Assessment Clinic.

A distinctive feature of the Holland Centre Assessment Clinic is that it is led by advanced practice physiotherapists (APPs) and advanced occupational therapists (APP/OTs) – clinicians with extensive credentials that include solid backgrounds in orthopaedics and specialized training from the surgeons.

Instead of immediately putting patients in a long queue to meet with an orthopaedic surgeon, the Holland Centre’s intake process connects them first with an APP/ OT, who works with them on a treatment strategy and, when needed, refers the patient on to an orthopaedic surgeon.

The process starts with a detailed assessment by an APP/ OT that includes a thorough clinical examination and a review of X-rays of the affected joints, as well as functional testing that gives information about a patient’s ability to carry out everyday activities. As part of the assessment, they are asked to do a six-minute walk test.

Using this information and a scoring system developed by the Centre’s experts, the APP/OT determines if the patient needs to see a surgeon about hip or knee replacement surgery or can carry on with non-surgical strategies such as exercises to strengthen weak muscles, weight loss to reduce joint loads, walking aids or other adaptive devices to help with everyday functions.

“Our APP/OTs give patients the tools, confidence and peace of mind to carry on with their daily activities,” says Susan Robarts, an advanced practice physiotherapist and team leader at the Holland Centre. “Many of our patients are pleasantly surprised to learn they don’t have to rush into surgery and that there’s a lot they can do to maximize their ability to move and function well.”

According to Dr. Albert Yee, chief of the Holland Musculoskeletal Program, the Central Intake and Assessment model provides a more efficient triage process because it ensures that only patients who need and want surgery are sent to an orthopaedic surgeon.

Today, about 30 per cent of Holland patients do not go on to see a surgeon. “Everyone’s immediate needs are addressed within a much shorter period,” says Dr. Yee. “Those who need surgery get to see a surgeon sooner and those who don’t need surgery can learn about their other options for treatment.”

Dr. Albert Yee is the chief of the Holland Musculoskeletal Program. (Photograph by Kevin Van Paassen)

For Mary Lou, it was a great relief to learn she didn’t need joint replacement surgery. Instead, her advanced practice physiotherapist recommended a 12-week education and exercise program, which taught her movements to strengthen her damaged joints and muscles and lessen her pain.

“It’s all about strengthening the good muscles you have to support the bad joints,” explains Mary Lou, who signed up for physiotherapist-led education sessions at the Holland Centre. “At the end of the 12 weeks, I saw improvement. I could walk without pain, I had more stamina, I could climb stairs without apprehension. I was even doing knee presses on one of the machines at the Centre, and I was able to press a much greater amount of weight than I thought I ever could.”

Since it started collecting data in 2007, the Holland Centre has managed 20,000 patient visits using the Central Intake and Assessment model. Today it’s widely considered to be the gold standard in hip and knee arthritis care.

“We were the first Centre of Excellence in Ontario for hip and knee replacements,” says Dr. Jeffrey Gollish, a former Holland Centre medical director who was instrumental in the development of the Central Intake and Assessment model. “One of our first mandates was to develop a new model of care delivery to improve access to care for patients with hip and knee arthritis, so a group of us went to Glasgow and Edinburgh in Scotland to study what they were doing there, and we incorporated key elements of their model to form the basis for what we have at the Holland today.”

Dr. Jeffrey Gollish was instrumental in developing the Central Intake and Assessment Model. (Photograph by Kevin Van Paassen)

Other health-care institutions in Canada have adopted similar models of care. Doctors and health administrators from other countries have also shown interest in the Holland Centre model.

“Our Central Intake and Assessment model functions very well,” says Dr. Murnaghan. “Going forward, our hope is to play a key role in working with Ontario’s health-system leaders to help other centres adapt it for their own settings, and to extend this model to other areas of musculoskeletal care, for example, for spine and for shoulders.”

Patricia Petersen: surgical treatment

Getting a referral to the Holland Centre also marked the beginning of the end of four years of pain for Patricia Petersen. In 2006, at age 66, she started feeling pain and tightness in her right leg and hip. Two years later, she was finally diagnosed with hip arthritis.

“I’ve always been very active. I used to hike, cross-country ski, kayak and do a lot of walking, until the pain began to limit my physical activities,” says Patricia, a retired University of Toronto professor and former director of the school’s Urban Studies Program. “Then in 2010, there was significant deterioration and my doctor looked at my X-rays and said, ‘You don’t have a hip joint there anymore.’ That’s when I was sent to Holland [Centre].”

A week after her doctor made the referral, Patricia got a call from the Holland Centre scheduling her for an assessment the following week. Within three weeks, she met with a Holland orthopaedic surgeon.

“I saw the surgeon in mid- May and they had a cancellation in June, but I was scheduled to teach in Germany, so the surgery was scheduled for my return in September. What I found so amazing was that within a month of seeing my own doctor, I had the assessment and was seen by the surgeon and could have had my hip replaced the next month,” Patricia recalls.

This optimal pathway from referral to surgery can be attributed directly to the intake process, says Dr. Richard Jenkinson, an orthopaedic surgeon at the Centre.

A study published last March in the international peer-reviewed BMJ (formerly the British Medical Journal) highlights the importance of joint replacement surgery for those who need it the most.

The study looked at about 4,500 patients in the U.S. between the ages of 45 to 79 and found that patients with severe knee osteoarthritis gained significant quality-of-life benefits from total knee replacement surgery, while those with less severe progression and symptoms of the disease experienced minimal improvement in quality of life after surgery.

“Now we’re only seeing patients who stand to benefit the most from surgery,” says Dr. Jenkinson. “At the same time, all patients are benefiting from a longer discussion about their options with an APP/OT, which typically takes more time than most orthopaedic surgeons are able to commit to in their clinic.”

Patricia resumed hiking, kayaking and other physical activities after her hip surgery.

Last May, she returned to the Holland Centre, this time with a referral for her left hip. While she’s less than thrilled about having a second hip replacement, she’s happy her doctor once again sent her to the Centre.

Says Patricia, “Based on my experience with my right hip replacement and on my recent assessment, I know I’m in good hands.”

To operate or not to operate

Will I need a knee operation right away? Should I stop going to the gym? Patients who are diagnosed with osteoarthritis in the knee are often confused about what it means to have this degenerative joint disease. With so much information available online and through other sources, it can be hard to separate fact from misinformation. Dr. Richard Jenkinson, an orthopaedic surgeon of Sunnybrook’s Holland Musculoskeletal Program, discusses some of the most common myths around knee osteoarthritis.

MYTH: My osteoarthritis is bone-on-bone. I need a knee replacement.

FACT: Not necessarily. While the most reliable surgical treatment for bone-on-bone arthritis is a knee replacement, the key issue is the severity of a patient’s symptoms. Knee replacement is most beneficial for patients experiencing pain, stiffness and functional limitation that significantly diminish their ability to engage and enjoy their daily lives.

MYTH: Knee surgery is the only option.

FACT: Even if a person has severe knee arthritis, non-operative treatment can alleviate the symptoms. The most effective non-operative strategies to relieve symptoms include strengthening the muscles that support the knee joint and decreasing the forces across the knee through weight loss. A program of low-impact exercises, possibly including formal physiotherapy, can be very helpful. Medications, injections, braces and other treatments can also play a role in improving function.

MYTH: I’ve been told that I should have knee surgery now when I’m younger, so I can have a better recovery.

FACT: The time to have knee replacement surgery is when the symptoms are severe enough that a person cannot manage a regular lifestyle without severe limitation. Anyone considering a knee replacement should first make sure they’ve given non-operative strategies a full attempt. Weight loss and exercise can do wonders for knee symptoms. Surgery can be considered for younger patients, but only if their symptoms are severe enough to warrant a significant operation.

MYTH: Knee replacements only last 10 years. My surgeon says I am “too young” for the surgery.

FACT: The vast majority of modern knee replacements can be expected to last longer than 20 years. Surgery should not be rushed into, however, if someone has not fully explored nonoperative treatments and is having severe symptoms. On the other hand, they should not be suffering for many years, to the point where their function and mobility become severely limited before getting a knee replacement.

MYTH: If I can’t have surgery, I should just take pills for the pain.

FACT: Strengthening the muscles around the knee and adding even light physical activity to one’s routine can greatly improve knee arthritis symptoms. Medications such as acetaminophen and ibuprofen, which are over-the-counter drugs, can help manage arthritis symptoms. Stronger narcotic painkillers are not usually recommended to manage arthritic pain due to potential side effects and the risk of addiction. For the minority of those with inflammatory arthritis, like rheumatoid arthritis, medications are very effective and are an important part of the treatment. Injections, braces and other options can also help people manage their symptoms if surgery is not possible.

The post Determining the best treatment for hip & knee problems appeared first on Your Health Matters.

Last fall, a small group of scientists, clinicians and engineers – complete strangers to one another – spent four months together at Sunnybrook, all to solve a pressing medical problem. First they watched cardiologists perform heart procedures and talked to nurses, interventionists and technicians about the challenges they face in their work. Then they headed to a room down the hall to brainstorm.

The team – Ramtin Ardeshiri, Lindsey Di Bartolomeo, Ryan Tennant and Dr. Wael Abuzeid – wanted to address a conundrum that has long plagued cardiologists: how to better image and fix blocked blood vessels. If they could collectively devise a solution to make these life-saving procedures safer and more effective, it would result in improved patient outcomes and perhaps even save hospitals money.

The hard work paid off. Not only did the team build a prototype for a device that can get around hard blockages in blood vessels, they are now in the process of obtaining a patent.

These aspiring medical-technology (medtech) professionals were the first group to take part in the new hospital-based education program called Medventions. Launched by the Schulich Heart Program at Sunnybrook, Medventions gives multidisciplinary teams – undergraduate and graduate student interns as well as clinical fellows – the ability to work closely with expert academic and industry advisors who teach them how to create and commercialize innovative life-changing technology that directly answers clinical needs.

Sunnybrook has long been at the forefront of medical innovation and revolutionizing health care. Yet, according to Dr. Brian Courtney, director of Medventions, during this past decade – as health-care funding has been increasingly challenged – more emphasis has been placed on building Canada’s medtech industry from within the hospital’s own walls.

“We have great research in Canada,” says Dr. Courtney, also a cardiologist at Sunnybrook who earned his engineering degree before attending medical school. “We have a lot of people who are very knowledgeable and are world leaders on the scientific front. We have busy physicians who do high procedural volumes and fairly complex cases. And yet, when we go and use devices, they’re often sourced from elsewhere, not from [Canada]. Because a good chunk of our future depends on health-care technology, we have to participate more actively in developing and bringing new technologies to the market.”

From tongue depressors to hip implants, Canada has long depended on using medical devices from other places. According to Statistics Canada, in 2016 Canada imported $8.6-billion in medical devices while exporting $3.1-billion – a trade gap of $5.5-billion.

Developing more medtech innovations in our own backyard, however, could mean turning Canada into a world market leader in a rapidly growing and lucrative sector, expected to reach an estimated $342.9-billion (U.S.) globally by 2021, according to industry research data.

Culture shift

Encouraging an entrepreneurial culture at Sunnybrook to become a research and commercialization hub in Canada makes sense. Not only does Sunnybrook serve a large patient population, it also offers access to preclinical and clinical evaluation infrastructure – outstanding scientists, wellequipped labs, medical experts, financial support, patient participants, information systems and regulatory pathways.

On the top floor at Sunnybrook, there’s even a laboratory for developing medical devices and a machine shop where researchers can build prototypes in-house.

This vision has attracted donors who share Sunnybrook’s ambition to accelerate discovery and commercialization. Their support covers stipends for interns, prototype and equipment costs, networking and educational activities.

“At Sunnybrook, we are working to change the Canadian hospital environment with our vision of ‘inventing the future of health care.’ We need to move toward a culture with a stronger focus on how we can improve the patient experience and outcomes while making more effective use of finite health-care resources through innovation,” explains Graham Wright, research director of the Schulich Heart Research Program.

As a result of the technologies that have been developed at Sunnybrook – ranging from substances that soften plaque buildup in arteries to a worldfirst helmet-like device that uses focused ultrasound to non-invasively treat areas of the brain that were previously unreachable – more patients could eventually benefit from these kinds of targeted, less invasive treatments.

Dr. Courtney’s own research has led to the creation of an ultrasound catheter that takes pictures inside blood vessels and heart chambers – a device now approved in Canada and the U.S.

“What do patients want? They want minimal impact on their lives, ultimately. They want to get out of the hospital as fast as possible and they want to get better,” says Dr. Courtney. “So, would you prefer an open heart surgery or would you prefer a thin wire snaked up through your vessel, so you get out the next day, as opposed to seven or eight days later?”

The Medventions program brings together student interns and clinical fellows with academic and industry experts to create innovative medical technology. (Photograph by Doug Nicholson)

Inventors in training

Medventions is taking medical innovation even further by developing not just the technology, but also addressing Canada’s skills gap by providing the necessary training – a boot camp for inventors. After all, new technologies can’t reach the patient’s bedside unless there are trained inventors with the skills to bring them to market.

Immersive training is key. Because the program has medtech engineers and students with other skillsets working closely with doctors, nurses and technicians, they’re able to get a true sense of the challenges medical professionals face.

For instance, Medventions team members can see with their own eyes the challenges playing out during actual procedures instead of simply visiting the hospital, sitting down with a cardiologist and asking, “What are your challenges?”

“Without that engagement, without that kind of shoulder-to- shoulder way of looking at the problems, discussing and going back and forth, it’s really hard to get to the core of the trouble,” says Wright.

The program isn’t prescriptive either. While team members are given some general suggestions, guidelines and a research area – whether it is in musculoskeletal, orthopaedics, vascular surgery or an area of cardiology – it’s ultimately up to them to decide what to focus their problem-solving skills on.

“We don’t want the Medventions team to come in and say to them, ‘This is what you’re going to work on. Here’s the project and just implement it,’” says Dr. Courtney. “We want them to identify the need and a number of solutions.”

Having students from different professions looking at problems is a boon for the doctors as well.

By working with the Medventions team, health-care professionals, who are typically immersed in their day-to-day work, become more familiar with the innovation and commercialization process. They also begin to see their problem areas through a different lens – challenges that can be solved.

Ultimately, building Canada’s medtech industry takes time. Developing an innovative new medical device or technology and bringing it to market – whether it’s a new catheter, stent, balloon, pacemaker, heart valve, hip implant or a piece of ultrasound equipment – requires patience and determination.

The eureka moment is just the beginning, but the Medventions program prepares innovators for the reality.

“It’s a marathon, not a sprint,” notes Wright. “Everybody understands that it takes time to make this all work. You can’t just come in and have an hour’s interview and come out with an idea. It’s something that takes years overall.”

The post How Sunnybrook is helping to build Canada’s medical technology industry appeared first on Your Health Matters.

Meet some of the inspiring faces that go above and beyond each and every day, in all corners of the hospital

The porter

Photo by Kevin Van Paassen

Odilia Serodeo

Odilia Serodeo is on a mission. “I come to work and try to help people,” she says. As a porter in patient transport, Odilia takes pride in getting people to various medical appointments gently, yet efficiently. “I treat patients the way I would like to be treated – with respect and kindness,” she says.

Odilia has grown to love her “second family,” as she calls them – the doctors, nurses and her fellow porters. But she admits that her first day at Sunnybrook, in 2006, as a part-time porter, was daunting. “I had worked in a hospital in the Azores, where I came from, but it wasn’t very big. Sunnybrook is huge and there are so many patients with such different experiences and traumas who needed help.”

Two weeks of on-site training gave Odilia the confidence she felt she needed, and a year later, she was hired to work full-time. What she likes best about the job is that no two days are the same. Her pager will ring and a nurse will direct her to pick up a patient, then let her know where the patient needs to be dropped off, which can be for anything from an ultrasound to surgery. Depending on what the patient needs done, Odilia shows up with a gurney or a wheelchair and transports the patient to the next appointment.

The opening of Sunnybrook’s Women & Babies program in 2010 was a career highlight for Odilia. She helped move babies from the neonatal intensive care unit at the program’s old downtown location to the new facility at Sunnybrook’s Bayview campus. “It was so exciting to see all [those babies] here,” she recalls. “Everybody was so happy!”

On the job at Sunnybrook for 11 years now, Odilia remains committed and passionate about her role. “Without porters, patients can’t go anywhere. There are no words for how good it feels to know I help them.”

–By Maureen Littlejohn

The nurse practitioner

Photo by Kevin Van Paassen

Deborah Brown

To Deborah Brown, a good day means spending time with her 19-year-old son or enjoying a motorcycle ride. “It’s surprising to me how incredibly calm I am when riding. It clears the mind.”

At work she also likes to keep things moving – teaching, conducting research and improving the lives of patients at Sunnybrook.

“A perfect day is when I go to the units and staff talk to me about an aspect of senior-friendly care, or learning that I’ve made someone’s life better,” says Deborah, who is a nurse practitioner.

Earlier this year, she received an honourable mention in the Toronto Star 2017 Nightingale Awards, in recognition of her leadership in advancing senior-friendly care.

The definition of “senior-friendly” is clear to Deborah. “[It] means being responsive to the unique needs of the senior population, in our values and beliefs [at Sunnybrook] as an organization, the way we deliver care, conduct research and design our physical spaces. It involves all those things.”

Alongside Sunnybrook’s senior-friendly team, she leads a program that seeks to recognize, prevent and manage delirium in older people. Delirium, a state of acute confusion experienced by many in hospital, can have serious adverse consequences. She is working to minimize the use of anti-psychotic drugs while helping patients recover from delirium.

Deborah has also brought in new ideas to enhance care for seniors, like a noise-monitoring device to help patients sleep better.

Innovation and commitment are important elements of her work, says Deborah. “If you want to make a difference and significantly impact health care, Sunnybrook is the place for you.”

– By Nadia Radovini

The family volunteer

Photo by Doug Nicholson

Lesley Skelly

From tragedy comes purpose. Following the suicide of her son, Kit, in 2013, Lesley Skelly and her husband became advocates for mental health, giving a series of media interviews to de-stigmatize schizophrenia, the disease that had taken their son. Immensely grateful for the care Kit had received at Sunnybrook, Lesley also joined the Patient & Family Advisory Council (PFAC) of the Department of Psychiatry “to give back and improve the [patient and family] experience for others.”

PFAC consists of patients, family members and staff who provide ideas and recommendations to help ensure that the patient’s and family’s points of view are integrated into service and quality-improvement projects throughout the Sunnybrook psychiatry program.

The advisory group was instrumental in launching a peer support program, so patients can share their experiences with former patients. Diagnosed in his second year of university at the age of 19, Kit struggled for four years with paranoia, delusions and hearing voices. He was in and out of hospital and on and off his meds, living at home when stable and then on the street and in shelters when not, eventually staying with his older brother. Lesley feels that peer support is an important addition and would have made Kit feel less isolated.

PFAC has also published a brochure about what to expect when patients are admitted. In May, the advisory group organized a community open house with four breakout sessions featuring panel discussions with psychiatrists, support staff and people with lived experience. “It was an amazing night with 200 people in attendance,” Lesley remarks.

She is enthusiastic too about the soon-to-be-launched parent support group. “That first time Kit was admitted to Sunnybrook was the scariest thing and we felt totally alone,” she says. “For other parents, being able to share, to talk to others in the same boat will be huge.”

– By Iain Newbigin

The paramedic and life-support educator

Photo by Doug Nicholson

Mark Cameron

“It’s easy to lose sight of how blessed we are, how well we’ve been trained as practitioners in Canada, and the integrity we carry with us as Canadians,” says Mark Cameron, a paramedic and advanced life support educator at Sunnybrook.

Raised in rural Ontario, Mark says it was the farming community that taught him the essential health-care values of accountability, interdependence and collaboration.

“As a fellow farmer, you’re going to need your neighbours at some point and they’re going to need you,” he says. “You need to be able to trust them at their word because if you can’t, you don’t survive.”

But to Mark, the term “neighbour” has nothing to do with proximity.

For years, he was a critical-care flight paramedic who travelled internationally to bring home injured vacationers. Today, as one of the original advanced-care paramedics trained through Sunnybrook, Mark trains paramedics and other health-care providers from around the world. He is also the co-founder of a growing humanitarian organization that provides medical education and relief for global disaster zones like Syria and Guyana.

He has received two honours from Queen Elizabeth II thus far – a Medal of Bravery and a Meritorious Service Medal. Humbled, Mark says both were simply for answering the call of duty.

“I took an oath. All health-care providers are my colleagues. No matter what country they work in, we are a team. And anyone in need is our patient.”

– By Katherine Nazimek

The co-op student

Photo by Kevin Van Paassen

Pearl Zaki

University of Waterloo student Pearl Zaki knew she was in for an enriching experience when she joined Dr. Edward Chow’s team at Sunnybrook’s Odette Cancer Centre for a co-op term.

Over the past decade, every Waterloo co-op student who has worked for Dr. Chow, a radiation oncologist, has gone on to win the university’s Co-op Student of the Year Award. Pearl, a health studies undergraduate student in the Faculty of Applied Health Sciences, kept the tradition going: she too received the honour this year.

“Being immersed in a clinical environment was eye-opening and humbling,” Pearl says. “There was a steep learning curve, but working with Dr. Chow, his staff and patients in the Rapid Radiotherapy Response Program really extended my health education beyond the classroom.”

Pearl spent her co-op term collecting data, coordinating clinical trials and conducting research projects within the program, which provides palliative radiotherapy to relieve symptoms in patients with advanced cancer.

What she didn’t anticipate was the profound and lasting impact that working with terminally ill patients would have on her. Some patients came in several times a week and, by the end of her co-op term, Pearl had developed close friendships with five of them.

Within two weeks of her return to school, she received messages that all five of those patients had passed away. “It’s a reality you have to accept, but at the same time, you have to maintain your sensitivity. It’s one of the biggest challenges of working in medicine,” Pearl says, whose ultimate goal is to attend medical school.

– By Sybil Millar

The RPN

Photo by Doug Nicholson

Fatima Brunning

Fatima Brunning, a registered practical nurse (RPN) at Sunnybrook’s Veterans Centre, not only cares for elderly war veterans but is also, as a member of the Canadian Forces Reserve, helping to build a committed, responsible young generation through Canada’s Cadet Program, which is geared to youth from age 12 to 18.

In 1973, Fatima and her family moved to Canada from Portugal. Several years later, she discovered a love for nursing at Central Technical High School and graduated with a certificate from the Registered Practical Nursing program (back in the ’80s and ’90s this course was offered at the high-school level).

“What I love about Sunnybrook is that it’s a teaching hospital. I’m a preceptor [instructor] and I usually take on at least one student a year,” says Fatima. “Not only do they learn during their clinical placement, but I also learn from them and that makes me a better nurse.”

Fatima continues to nurture her other interest – being involved with the military. In 2004, she was sworn in as a Reserve Officer with the Cadet Instructors Cadre (CIC). Currently, she is a Supply Officer and her main role is in logistics. Fatima is a First Aid Officer, as well as a marksmanship coach and canoe instructor.

And as for her career at Sunnybrook, Fatima has spent 15 years to date, working at the Veterans Centre – Canada’s largest care facility for war veterans – where she helps to take care of Second World War and Korean War veterans. The average age of the residents is 94, and each of them requires advanced nursing skills and expertise in providing reassurance and support.

November 11 is a special day at the Veterans Centre. Fatima will arrive at 6 a.m. sharp to wake the residents in her unit and get them ready in their blazers and medals for Remembrance Day. “I’m proud to be able to serve our veterans,” says Fatima. “Everyone has a story to tell. [Working here] is both an enriching and a rewarding experience.”

– By Sally Fur

The post We are Sunnybrook appeared first on Your Health Matters.

At Sunnybrook’s Accessible Care Pregnancy Clinic, women with physical disabilities are cared for from pre-pregnancy consultation to weaning.

When Dalia Abd Almajed’s smartphone disappeared, she knew her 18-month-old daughter must have taken it and abandoned it somewhere in the house. But where? The ringer was off and Dalia was too busy with her newborn son to hunt for the phone.

Most people would be frustrated, maybe frantic. But for Dalia, it was no biggie, barely registering in a life full of challenges. Dependent on a wheelchair for mobility, the 38-year-old mother has managed two pregnancies and the birth of two healthy babies in the past couple of years.

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“Everyone is unique in terms of needs”

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Coping with the logistics of pregnancy – transportation to medical appointments, transferring from a wheelchair to the examination table, coordinating meetings with specialists – poses a huge challenge for mobility-disabled women like Dalia, who immigrated to Toronto in 2014.

And that’s before labour and delivery and bringing a newborn home. “My medical condition is complicated,” explains Dalia, who practised as a physician in her native Iraq before developing transverse myelitis, a disease affecting her spinal cord. “Pregnancy itself, for everyone, is complicated. So my pregnancy, [because I’m] in a wheelchair, was a very complex case. I needed many referrals, many specialists – respirologist, hemaetologist, neurologist, dietitian, anesthetist.

“I was afraid. I was thinking, How will all this be arranged? Will they be able to care for me?”

Fortunately for Dalia and other women in Ontario of reproductive age with disabilities, the Accessible Care Pregnancy Clinic opened recently at Sunnybrook. North America’s first clinic caring for pregnant women with a wide range of physical mobility disabilities. It was the idea and the passion of Dr. Anne Berndl.

Dalia Abd Almajed had a healthy pregnancy and delivery of son Abbas in May 2017. (Photo by Doug Nicholson)

“It’s been my personal project since I started here,” notes Dr. Berndl, a maternal fetal medicine specialist and director of the clinic. “Before I became a doctor, I worked in a home with foster children with disabilities. It gave me a lot of insight. Everyone is unique in terms of needs. There’s no standard approach to people with physical disabilities.”

Dr. Berndl was already caring for pregnant women with disabilities as part of her practice as a high-risk obstetrician at Sunnybrook. She became Dalia’s obstetrician halfway through her first pregnancy. By the time the Accessible Care Pregnancy Clinic officially opened in May, Dalia was well into her second pregnancy.

“For the second pregnancy, I didn’t have many concerns because I knew that they will deal with it very well and they know what I need,” says Dalia. “I felt confidence in the team, in the hospital itself. They were listening to me.”

Just as listening to the heartbeat of the fetus in the womb is the key to caring for the unborn infant, so is listening to the patient, which is at the heart of how obstetrics is practised at the clinic. For several years prior to the clinic’s official opening, pregnant women with disabilities who came to Sunnybrook were invited by Dr. Berndl to take part in exit interviews. They were asked: What do you need? What would you want to see in a clinic tailored for women with disabilities? What should we be doing better at Sunnybrook?

It was from those interviews, notes Dr. Berndl, that Sunnybrook came up with the framework for the Accessible Care Pregnancy Clinic. For example, she made sure there was a scale that can accommodate wheelchairs. Without it, women using wheelchairs tend to not be weighed properly – or even not weighed at all.

Dalia, pictured with Dr. Anne Berndl, director of the Accessible Care Pregnancy Clinic. (Photo by Doug Nicholson)

There’s also a concerted effort at the clinic to meet the special needs of pregnant women with disabilities. “The ultrasound bed was higher than the wheelchair,” recalls Dalia. “The technician was able take the ultrasound while I was sitting on the chair.”

Allowing extra time for procedures, such as Dalia’s ultrasound, and for getting from one appointment or lab test to the next is built into the clinic’s scheduling.

“Logistics is one of the hardest things we’ve been working on,” says Dr. Berndl. That includes allowing extra time for transfers and positioning the patient; for consolidating care, so appointments are coordinated and especially for the TTC Wheel-Trans schedule. “We’re learning a lot about the challenges of transportation,” she adds ruefully.

Nevertheless, Dr. Berndl is determined that every woman’s needs are considered and properly accommodated.

The first tenet at the Accessible Care Pregnancy Clinic, according to Dr. Berndl, is to respect each woman as an individual. Every member of the health-care team, including ward clerks, is coached to treat every patient with dignity and understanding. “These women deserve respect and encouragement just like any other woman,” says Dr. Berndl.

This attitude is light-years away from how society in the past regarded pregnant women with disabilities and, in some cases, even up to now.

“I sensed that these women were feeling highly discouraged from having pregnancies,” observes Dr. Berndl. “They’d feel the negativity, the stigma from health-care professionals as well as from others, when they were pregnant.”

Because pregnancy may affect the health of women with disabilities, the clinic encourages pre-pregnancy consultations. “They can ask about concerns and about what may happen,” says Dr. Berndl, “and then feel good about their decisions.”

The connection that begins with the pre-pregnancy consultation doesn’t end until the baby is weaned. An advanced practice registered nurse (APRN) calls every patient before the first visit, explains Dr. Berndl.

“We ask: What are your needs? What could we be doing to make it more comfortable for you? How is your mobility? Before [the patient] comes, we’re ready,” notes Dr. Berndl.

She also points out that at Sunnybrook, there are a number of subspecialists to see women with disabilities and who go out of their way to adjust to the patients’ needs. “Two weeks ago, a neurologist asked me, ‘Do you mind if I just run upstairs to your office and do the consult there?’ There is so much enthusiasm [here at Sunnybrook] for this clinic,” says Dr. Berndl.

Dalia gets an ultrasound while in her wheelchair.
(Photo by Doug Nicholson)

A lactation consultant is available after the birth. As well, the Accessible Care Pregnancy Clinic connects new mothers with community resources. “[We try] to make those linkages early on,” says Dr. Berndl. “These mothers are exhausted and overwhelmed, especially if there is no one out there to support them.”

For Dalia, all of these support services have made a huge difference. She has no family in Canada other than her husband, Salam, who worked in Iraq as a biologist and is now training as a lab technician. “The social worker at Sunnybrook arranged for contact with the CHC [Community Health Centre] to provide help with the baby and to give me time to rest or sleep.”

While managing the pregnancy and postpartum recovery is routine work at the clinic, the ultimate goal is a comfortable labour and the delivery of a healthy baby, with vaginal delivery whenever it’s possible.

Labour and delivery plans are drawn up with input from the entire interdisciplinary team, and every member of the labour and delivery team receives a copy, including the patient herself.

“She is the leader of her own team,” emphasizes Dr. Berndl. “Even if she comes to the hospital at 4 a.m. on a Tuesday in a triage situation, she comes with the plan. We’re always making sure that everyone knows what is going on. Excellence in communication is another one of the tenets of the clinic.”

Being able to communicate is also important for new mothers. That’s why Dalia finally went hunting for her phone.

“My daughter plays with it and throws it everywhere,” she says. “It was under the bed.”

The post Making pregnancy more accessible for women with physical disabilities appeared first on Your Health Matters.

Sandy Hudson says she received terrific care from everyone at Sunnybrook, but it was the woman who took care of the little things who made the biggest difference each day.

Filomena Madeira, patient service partner, was her personal care worker during Sandy’s three-week stay in late 2016.

“She added a third dimension to my stay. She always had a smile. She washed my hair – the personal things that I couldn’t do for myself,” Sandy says.

Filomena made such a big difference that Sandy designated her as one of Sunnybrook’s Champions of Care. The Champions of Care program is a meaningful way for patients to acknowledge exceptional care received from someone special at Sunnybrook – a doctor, nurse, technician, volunteer or any staff member – in the form of a donation.

Launched in 2007, Champions of Care was the first hospital- based employee recognition program of its kind in Toronto. It was set up to let patients recognize the individuals and teams who demonstrate and provide outstanding care and treatment – those who make a difference in someone’s Sunnybrook experience.

Each Champion of Care receives an acknowledgement card and a commemorative pin to wear in recognition of the donor’s generosity. In its first two months alone, more than 100 pins were given to hospital staff members, and to date the program has received more than $1.2-million in donations honouring more than 1,600 caregivers.

Filomena says she wears her pin proudly, and Sandy is still effusive with praise for her caregiver months after returning home from hospital and rehabilitative care. To Sandy, now 71, Filomena was a Champion of Care because she always made an extra effort to ensure she was comfortable during a harrowing time.

It started when Sandy was admitted to Sunnybrook for three weeks after returning from a vacation in Scotland. Feeling unwell, she thought she had a cold at first, but just kept getting worse.

Sunnybrook’s team diagnosed Sandy with an autoimmune disease. Until her trip, she had been healthy; when she was admitted to Sunnybrook, her condition was so severe that she could not walk and could do little for herself.

“The doctors were absolutely fabulous, and so was the nursing staff. When you’re there for a long time, though, the people you see most are your personal care workers. Filomena was just awesome,” Sandy says.

“At the beginning of my stay, I needed a lot of personal help. Whenever I asked, she took care of me.”

Filomena says Sandy was “wonderful,” but she gives all her patients at Sunnybrook the same kind of personal attention.

“When patients come, I introduce myself, tell them my name and let them know that whatever they need, I can help.” says Filomena, who has cared for patients at Sunnybrook for 29 years.

Sandy says after she came home from Sunnybrook, she received a survey in the mail asking whether she was happy with the care she received.

“I said yes to the nth degree for everything. I don’t in any way want to downplay the amazing work that everyone else did for me, but when the survey got to the part asking if I’d like to make a donation and nominate someone to their Champions of Care program, it had to be Filomena,” she says.

“She made such a big difference for me. When you can’t do things for yourself, that’s when you really notice.”

Filomena would help Sandy by doing everything from offering her a cup of tea to making sure she was not too warm or too cold. Perhaps her real secret, though, is that “I smile all the time. When I would come in and say good morning to Mrs. Hudson, she’d say, ‘You’re my angel!’ That was it.”

The generosity of donors like Sandy goes a long way to making sure that innovation at Sunnybrook is possible, in part because patients are able to choose which program area they would like their donation to benefit.

For patients, nominating a Champion of Care is a way of personalizing and recognizing the work individuals do at Sunnybrook; for recipients, it’s another reason to be proud of their dedicated service.

Today, Sandy’s condition is vastly improved. After her stay at Sunnybrook, she spent 10 days at St. John’s Rehab before returning home.

Now she is on medication that has stabilized her condition, making it possible for her to drive, sew and make meals in her own kitchen.

“The program I’m on through the rheumatology department appears to be working,” she says.

“I have to be really careful, but I’m feeling big-time better.”

» Learn more about the Champions of Care Program

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Being admitted to hospital goes hand in hand with a lot of testing, such as blood work. Ten per cent of admitted patients may also receive a blood product.

To make this process as safe as possible for patients, Sunnybrook is expanding its use of innovative technologies to make sure those tests and transfusions are done more accurately than ever before.

A new barcode system is being implemented across the hospital. Where the system has already been introduced, patients are issued a barcoded wristband that, when scanned, provides the patient’s information and a unique patient identifier. This allows staff to confirm the patient’s identity and label at the bedside, track collection in real time and, where applicable, ensure that the correct blood product is transfused.

Two technologies – one for specimen collection and another for blood transfusion – use this barcode system, called electronic Positive Patient Identification (ePPID). The approach makes patient and specimen misidentification almost impossible. To date, over 75,000 samples have already been collected using this new technology, and not a single mislabelled sample has been received in the lab.

Sunnybrook’s operating room is the latest department to use the system. The plan is to roll out this new technology to all other areas of the hospital and expand the scope to other treatments in the future, such as medication administration.

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