2012 Family Centred Care Awards

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1 2012 s Partners in Care, BC Children s Hospital and BC Children s Hospital Foundation announce this year s star partners who were nominated by patients and families. These awards celebrate the partnership between patients, families and professionals. They recognize those individuals who demonstrate and promote excellence in the principles of family centred care. Barb Fitzsimmons Senior Vice President BCCH & SHHC Lifetime Achievement Although Barb has a very busy schedule she attends the monthly BC Children s Hospital Partners in Care Patient & Family Advisory Committees. She has given support to the growth of Partners in Care from one Patient and Family Advisory to the point that we now have four Family Advisories and one Youth Advisory. As we have moved forward with site re-development again Barb has been a strong voice for patient and family involvement in the governance of the project and in particular with the new Model of Care that we will be moving ahead to operationalize. At the IFD events, many of the parents who were involved commented on how Barb took the time to thank them for providing their feedback and in always supporting patient and family views even when some of those ideas challenged current practice. Barb has supported The BC Children s Hospital Partners in Care Patient and Family Advisory in some of the fun work that we have initiated like Dog Visitation and the recreation of the Family Support and Resource Centre but she has also supported PiC to accomplish some of more significant and serious work like the long-time in coming Guidelines for Patients requesting alternatives to Blood Transfusion, including Jehovah s Witnesses. When you get to know her you cannot but help be moved by her commitment to patient and family centred care and to doing what is truly best for patients and families. She is always looking for ways in which our patient and family centred care program can educate others outside of the organization about the philosophy. This shows up in other aspects of her life she has served the board of Directors for Canuck Place Children s Hospice and the Board for Ronald McDonald house and has made opportunities for them to become linked with Partners in Care. Barb has been an advocate for patient and family centred care over the years in the sense that it was very often Barb who looked for opportunities for how Partners in Care could and should be involved with various projects and hospital initiatives. Over time, her support has empowered the role of the Partners in Care Family Liaison so that Susan Greig is now at the table where those discussions happen. Just recently Barb put forward the idea of having this role sit on the Hospital Operations committee. BCCH & SHHC is the first and only hospital in Canada that has a parent sitting on its operations committee.

2 Bruce Bjornson Neurologist Neurology Clinic Award of Distinction My story happened many years ago (1993 or 1994) but I am writing now because I only recently remembered who Dr. Bjornson was. I am also writing because I want people to understand how long lasting and how far reaching one act of patient and family centred care can be. I found out from another physician in a very casual way that the results of the tests showed that our daughter had a progressive neurological disease. When I tried to contact our doctor s office no one was able to give me information..a week later our daughter ended up in the hospital..on the second day Dr. Bjornson and a group of students came into the room to do rounds I expressed that I didn t know what a progressive neurological disease was except it sounds bad and I m scared..he asked all of the students to leave. He sat down on the bed next to me. What I have to tell you is not going to be easy. Who would you like to have with you? I told him my husband was at work.but I felt I wanted to have the charge nurse and I wanted my friend whose son was in the bed next to our daughter. We had become friends during our children s many stays at the hospital. He pulled the curtain back so that my friend could be part of the conversation. The charge nurse came into the room, sat on the bed beside me and put her arm around me. Dr. Bjornson then explained to me that my daughter had a genetic disease for which there was no cure. Dr. Bjornson cried with me, with us Later he went and ensured we had an appointment with our physician the following day so my husband could be present. The next day he came to ask us how the appointment went and if we had any other questions. I will never, ever forget his next words, Despite the situation and how difficult things will be you know your daughter best. Never doubt that you will know what is best for her. Our daughter passed away in I know Bruce must ve seen our daughter on his rotations whenever we were in the hospital over the next years but because those years were so difficult I had blocked out most of my memories during that time. I remember what happened that day very clearly but sadly I lost my memory and recognition of the physician who had treated us in such a patient and family centred way. An event happened this spring that helped me remember. For the past seven years, I have been teaching patient and family centred care at BC Children s and I have told the story of how this doctor treated us many, many times. I use the way he treated us as a stellar example of how, when delivering bad news, it can be done in a sensitive and patient & family centred way. I talk about how he respected my choice to have my friend present, even though she was the mother of the child in the next bed. I explain how having a hospital professional express his confidence in us as parents empowered us and created in us a certainty that we were equal partners and the best advocates our daughter could have. And lastly, I use the story to explain how one patient and family centred act can affect a patient or family member positively for a life time.

3 Alette Giezen Dietician, Biochemical Diseases Ramona Salvarinova Physician, Biochemical Diseases Joint Award of Distinction From a pure medical support stance we have 24-hour support with Dr. Salvarinova.We have weekly and sometimes daily conversations with Alette about his blood results, general health and nutritional needs. Information is shared back and forth between the two and they are always current with what is going on. Alette ensures that we receive education and training on how to make safe foods for our so. Dr. Salvarinova ensures we are updated with the latest medical studies and news, as she attends international conferences and regularly reaching out to her colleagues in order to keep current. All of that is then layered with the emotional support they provide us. Many times they have offered a shoulder to cry on and they show genuine care and concern for our family and our well-being. After a successful open heart surgery Dr. Salvarinova showed a great deal of respect and compassion towards us, being delicate and kind, but remained firm and clear about the seriousness at hand. She shows a lot of patience when we ask the same question over and over again, yet each time confirms we have understood the answer. Photo Not Available for Ramona Salvarinova Alette fosters a friendly and open relationship She encourages us to ask questions while empowering us to come up with the answers on our own. As we are 2 dads with a son who was adopted, we are certainly not typical. Yet that has never been made an issue and they truly see and treat us as a genuine family. We have constant collaboration with them. We also get information from other families worldwide (via Facebook) and we do our own online reading. This means that we often seek clarification from them and have even challenged them on an issue or two. They receive this feedback extremely well and then provide an explanation, even going so far as to modify a decision or doing outreach to their peers worldwide for an answer. Ultimately, our son's health is our responsibility and Dr. Salvarinova and Alette have given us the tools and resources to feel confident in our ability to manage and understand MSUD. They foster an open-door policy, yet ensure that we have the knowledge and skills to be independent. A disease like MSUD demands that you have a competent and capable doctor and dietician PLUS they have to be supportive and work collaboratively with each other, their peers and of course, us - the parents. They empower us with knowledge and skill to keep our son safe and they value us as a family. In this regard, we feel that our expectations have been exceeded, and hope that these two amazing individuals are given the recognition they are so deserving of.

4 Edmond Chan Clinical Assistant Professor Allergy & Asthma Clinic He answers all questions thoroughly and really understands how allergies affect the family. He has provided us with training, websites, and hand-outs following each visit and has spent time discussing with me the difficulty with allergy testing, and the discrepancies in beliefs of his colleagues. He deals beautifully with my daughter..and with each challenge passed it is literally like winning the lottery when we discover she is no longer allergic. He meets all principles of Family Centered Care. As a physician and a mother of an allergic child, this outstanding physician is most certainly deserving of this award. Margaret Choi Neonatologist - NICU Dr. Choi (respected) our rights as parents and humanized our experience in a place that started out so foreign to us. She took the time to listen to our concerns and (helped us) to get involved in our child s care, so that we could be equipped with the knowledge needed to make the best decisions possible.the NICU it can be a very scary, defeating place and having a doctor like Dr. Choi made the unbearable, bearable. A doctor that practices with not only their mind and education, but also with their heart makes the best kind of doctor. Throughout the doubt, hardship and opinions that we faced in the hospital it was Dr. Choi that enabled us to be empowered as parents to do what we knew was right in our hearts. We believe Dr. Choi deserves a because she is the epitome of what it represents.

5 Paul Steinbok Professor of Surgery & Neurosurgeon Division of Pediatric Neurosurgery Dr. Steinbok had always time to answer all our questions. He provided immediate reports after the procedures, always respected privacy and explained the situation clearly. He listened to our intuition..made sure that we understand everything he was going to do.and was the only one willing to try something that the others considered not worth trying. The step that he made can be considered literally as our child s rebirth! Honorable Mention Award Winners Andrea Johnson Social Worker - Oncology Jan Rooks Nurse Clinician Cardiology Clinic We would like to thank all of the many clinicians, physicians, administrators, and staff who value patients & families as partners and weave the principles of partnership in the tapestry of their work!