NeuroMatters. A Major Change in Meeting SCI Needs Looking at the Tsunami of Non-Traumatic SCI. Connecting YOU to the Research IN THIS ISSUE

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1 NeuroMatters Connecting YOU to the Research Spring 2015, Issue 26 A Major Change in Meeting SCI Needs Looking at the Tsunami of Non-Traumatic SCI The winter issue of NeuroMatters highlighted some findings from the first ever Canada-wide SCI Consumer Survey. Conducted from May 2011 to August 2012, the survey looked at how well the various needs of individuals with SCI (both traumatic and non traumatic) were being met after they were discharged from rehabilitation and living in the community. IN THIS ISSUE A Major Change in Meeting SCI Needs Making It Across the Divide Upcoming Events Together We Can What You Told Us Getting It Right This issue, we look at the results from another segment within the survey, those living with non traumatic spinal cord injuries (NTSCI). The survey results gave some positive news. The majority of individuals with SCI (approximately 75 percent) agreed that some major expressed needs for community support were being met. Effective delivery of these services and supports must continue. However, the report also shows that a comparison between people with a traumatic SCI and non traumatic SCI revealed major differences. Those with NTSCI are not the same as those with traumatic injuries, and therefore have different needs. This is directly related to the cause of their injuries, which in the case of NTSCI, are spinal cords affected by various conditions (tumour, infection, neurodegenerative diseases, post-surgical complications, or spina bifida). Understanding a different life experience Dr. Luc Noreau, professor at Laval University and principal investigator for the SCI Community Survey, has analyzed the survey results. He observes that individuals who sustain a traumatic injury find their lives changed in an instant, but over time, consider themselves as healthy people even though they experience some secondary health conditions. In fact, through rehabilitation, most gain back some physical function. As long as secondary health conditions are well managed, even loss of mobility becomes less of a factor....continued on page 2

2 ...continued from page 1 The post injury outcome is very different for those with a NTSCI. These individuals live with a degenerative illness, which means functional decline is gradual and over time, mobility continues to decrease. It is the cause of the injury that gives those with NTSCI a different life experience and therefore a different perspective on life, explains Dr. Noreau. This impacts how they approach various community needs such as employment, housing and mobility. What they consider as priority needs are not always the same as those with traumatic injuries. We must think of these individuals as a very different group. Looking at the differences The first difference that emerges from the survey is the profile of the individual with NTSCI. More are single and living alone, female, older (53 to 68 years) and with a lower income. They are more likely to have paraplegia or an incomplete injury (82 percent), and being older, they tend to have co-existing health conditions. The greatest differences uncovered by the survey were found when unmet needs were identified. For example, the need for accessible housing is lower for those with NTSCI (85 vs. 71 percent). This is partly explained because those with traumatic injuries have an immediate need for accessible housing, whereas for NTSCI, the need arises over a longer term and varies, according to health conditions and age. The need for employment is lower for those with NTSCI (33 vs.19 percent), likely tied to the fact that an individual living with a degenerative condition may not have the same expectations of returning to the workforce. Similar differences in unmet needs also showed up in activities related to mobility, feeding, vacation and job training. Different needs different services A major shift has taken place in Canada in the nature of SCI. 25 years ago individuals with traumatic injuries were much greater than NTSCI injuries (75 vs. 25 percent). Today in Canada, those admitted to rehabilitation with a NTSCI now surpass traumatic injuries. The reasons are mostly attributed to increased awareness in injury prevention and an aging population. Some researchers are calling this change a tsunami of NTSCI. This is not a new trend, notes Dr. Noreau, Clinicians and rehabilitation physicians have seen the change taking place. Over the next decade, Canada will continue to see more nontraumatic than traumatic spinal cord injuries. The SCI Consumer Survey tells us we must plan for how we support unmet needs differently in this growing population of individuals by putting into place different medical and rehabilitative resources. A major shift has taken place in Canada in the nature of SCI. Today in Canada, those admitted to rehabilitation with a NTSCI now surpass traumatic injuries. The survey, Spinal Cord Injury Community Survey: A National, Comprehensive Study to Portray the Lives of Canadians with Spinal Cord Injury was created with input from people with SCI, experts in the field of SCI research and healthcare and SCI community advocates. It included 1,549 respondents. Supported by the Ontario Neurotrauma Foundation and Rick Hansen Institute, the survey was undertaken by a team of Canadian researchers, led by Dr. Luc Noreau at the Université Laval and endorsed by SCI Canada, MÉMO-Québec and other community groups. A summary of results can be found at: 2

3 Making It Across the Divide Evaluating a new model in ABI care An eighteenth birthday should be a great celebration for a young person preparing to enter adulthood. But for youth and their families with acquired brain injuries, 18 too often means a stressful transition from a pediatric rehabilitation service to adult healthcare services. One family said that the combination of fear and uncertainty is like falling off a cliff ; another described how, every aspect of our life was shaken up. At 16, the youth had 2 years to prepare for planning the future, and at 18, they experienced a coordinated transfer directly to either the Toronto Rehab Centre or another outpatient specialized rehabilitation service. In Ontario, there are two rehabilitation systems for individuals with ABI and their families. Children up to 18 are supported at specialized pediatric facilities where they may receive health and related social services. Their healthcare is managed by coordinated teams of healthcare professionals. Those 18 and over often have to navigate the adult system of services themselves and/or with family members. Healthcare for adults is spread between various locations and providers, and school is no longer an integrated part of the support system. The challenge is the lack of any kind of formal transition from the pediatric to the adult system. Children with disabilities now live a normal life span. It is important that they enter the adult system prepared and equipped to manage their own healthcare. And like all young people approaching adulthood, youth with ABI are at a time in their lives when they most need to be set up for success, i.e. finishing high school, looking to further education, choosing careers and building relationships. The LIFEspan project Eight years ago, the Toronto Rehab Centre and Holland Bloorview Kids Rehabilitation Hospital developed a collaborative model to make transition between the two systems easier and more effective. It focused on two populations, youth with ABI as well as youth with cerebral palsy (CP)....continued on page 4 3

4 ...continued from page 3 There are two parts to LIFEspan (Living Independently and Fully Engaged). One addresses the importance of preparation ahead of a youth s 18th birthday, the second coordinates the transfer from one system to the other through a dedicated service. At 16, the youth and their family enter the two-year pediatric LIFEspan program to prepare for transition, connect with the appropriate supports and learn how the adult rehab system works. Each individual works with a crossappointed staff team from both Holland Bloorview and Toronto Rehab. The team knows their specific issues and health conditions. Once 18, the same crossappointed team sets up referrals so the individual and family knows exactly who to contact for an appointment once they ve left the pediatric system. Transition includes an official discharge and a coordinated transfer process to either Toronto Rehab or another outpatient specialized rehabilitation service. Evaluating the model With ONF research funding, researchers have completed a two-part evaluation of the model. Called the LETS Study (A Longitudinal Evaluation of Upcoming Events Falls Prevention Month, November 2015 Creating a movement to prevent falls in older adults. Falls are a serious issue for older adults. Falls among those aged 65+ result in over 78,000 hospitalizations in Canada each year (Seniors Falls Canada: Second Report). Falling (and the fear of falling) can lead to depression, loss of mobility, loss of independence and death. But falls in older adults are predictable and preventable. Transition Services), Dr. Shauna Kingsnorth and her team looked at: The impact of the model on continuity of care from pediatric to adult care, not just related to health but also to well-being, social participation, transition readiness and healthcare use. How well the model was implemented in real life, that is, did it actually lead to successful transfer of care into the adult system? Measuring how well the process worked Although all young people leaving pediatric services are given a formal discharge and referrals as part of transition, it was hoped that with more formal linkages in place, graduates of LIFEspan would make a more effective transition. Success was measured by tracking how many LIFEspan graduates actually made it into adult care. By auditing health records at Toronto Rehab and Sunnybrook for adult visits, the team found out that each one had booked their first appointment with an adult rehab provider before their 19th birthday. Results also showed that these youth and their families were better prepared for transition. During transfer, they had both the information and skills needed in order We are pooling our collective efforts to prevent falls and injuries from falls in older adults. In November 2015, let s raise the profile of falls prevention. Everyone has a role to play in keeping us all healthy and active as we age. Fifteen organizations, including ONF, have partnered to provide leadership and planning for Falls Prevention Month As a collective, we commit to cross-posting initiatives and working collaboratively. Join the movement If you work with older adults, we want to manage their ongoing health needs. Key to success, says Dr. Kingsnorth, was the formal partnership in place between the two rehab facilities and the specialized cross-appointed team. The question we asked ourselves, says Kingsnorth, is did these young people make it across the divide? The answer we got was yes. At 16, the youth had 2 years to prepare for planning the future, and at 18, they experienced a coordinated transfer directly to either the Toronto rehab centre or another outpatient specialized rehabilitation service. Next Steps Although the model focused on individuals with ABI and CP, its principles are readily transferable to other groups of young people or health-related services that also make a transition from youth into an adult system of services. Our intent was to share the full story so others can replicate it and build on it, says Kingsnorth. Youth to adult transition is an incredibly stressful time. There is great value in sharing these results and replicating them. you to join us in promoting Falls Prevention Month. Organize at least one falls prevention initiative for November Launch a social media campaign, run an exercise class, do staff training, hang posters, offer home safety checks everything helps! Let us know about your plans. Contact lindsay@onf.org for more information. 4

5 TOGETHER WE CAN Scanning the current and future state of SCI Rehabilitation Whether you are an individual with SCI or family member, clinician, a lobbyist, policy maker or a research organization such as ONF, there is valuable information for you in the first ever environmental scan of SCI rehabilitation across Canada. Known as E-Scan, the recently released Rehabilitation Environmental Scan Atlas: Capturing capacity in Canadian SCI Rehabilitation, profiles 13 SCI rehabilitation sites in Canada. The purpose was to describe current trends and gaps in SCI rehabilitation service and delivery. The result is a goldmine of information as well as a manifesto for change. E-Scan provides us with a snapshot of rehabilitation services across the country, explains one of the project s lead authors, Dr. Cathy Craven. But in the process of collecting, validating and synthesizing the vast amount of information, we were able to learn how the SCI rehabilitation community can transform clinical practice by How E-Scan was done In order to paint an accurate picture of what is happening in rehabilitation and evaluate what is good (or not good) about the services and delivery system, the team established a framework of 37 rehabilitation goals. The goals covered 3 areas: body structure and function, activity, and participation. Body structure and function goals, for example, included skin integrity and management of neuropathic pain. Once compiled, the results created individual report cards for each goal as well as a national report card....continued on page 6 5

6 ...continued from page 5 The report card on Mobility Wheeled Mobility, for example, shows that wheeled mobility practices vary widely across Canada and there is a need for acquiring and funding appropriate equipment and accommodating needs as they change over a lifetime. Using the information E-Scan is packed with information as well as action items for a wide range of SCI stakeholders. Administrators, policy makers, researchers: Constructive suggestions on how to best implement changes in practice and/or service delivery in clinical care, research and policy. Consumers, families and caregivers: Tips on care and support. Profiles and full contact information for leading SCI practitioners and spotlight sections on where to find specialized SCI care. Clinicians and healthcare providers: Best practice guidelines, tips to deliver the best care with assessment techniques and key outcome measures, resources on current and emerging research. Advocacy groups and policy makers: A realistic and current snapshot of what is working, what isn t working and what could be done to transform clinical practice in the next five years. Ontario Rehab Facilities Featured in E-Scan London: Regional SCI Rehabilitation Program, Parkwood Hospital, St. Joseph s Healthcare Hamilton: Spinal Cord Injury Rehabilitation Program, Hamilton Health Sciences, Regional Rehabilitation Centre Toronto: Brain and Spinal Cord Rehab Program, Toronto Rehabilitation Institute University Health Network Kingston: Physical Medicine and Rehabilitation Program, St. Mary s of the Lake Hospital, Providence Care Ottawa: Neuromuscular Care Program, The Ottawa Hospital Rehabilitation Centre Results showed the gaps Overall, the individual goal report cards as well as the national report revealed barriers to delivering the best SCI care possible. For example, evidence-based research clearly shows that the use of electrical stimulation enhances wound healing and leads to healthcare cost savings. But policy changes are required to ensure funding exists to purchase equipment and other resources needed to apply such compelling evidence to routine practice. This information gives E-Scan...continued on page 7 6

7 ...continued from page 6 tremendous potential for facilitating systemic healthcare change. As noted by Dr. Craven, We found literally hundreds of instances where a clinician couldn t implement a practice they knew worked. For both policy makers and lobby groups, the exposure of barriers to implementation can be the first step in restructuring, providing optimum funding for future research and setting new policy agendas. A future look at SCI in Canada E-Scan reinforces the message that SCI is a complex, chronic condition that requires a lifetime of support and care. It is not a single straightforward health condition. But despite the massive scope of what needs to happen, E-Scan concludes with a statement or promise or premise that collective commitment change is possible: We trust these key messages will prompt stakeholders to focus their collective efforts on creating services...that ensure the best possible rehabilitation outcomes, for individuals with SCI, by The E-Scan was authored by Toronto Rehab scientists Dr. Cathy Craven and Professor Molly Verrier, and Dr. Dalton Wolfe and Jane Hsieh of Parkwood Hospital in London and in part funded by ONF and the Rick Hansen Institute(RHI) and published by RHI. scimanifesto This This project has been propelled by the genuine compassion and commitment of Canadian rehabilitation professionals to provide the best care to individuals living with the consequences of spinal cord injury. From the Preface, Dr. Cathy Craven What You Told Us: Thank you for your ideas and comments A recent survey about NeuroMatters revealed some helpful facts about who reads ONF s quarterly publication, what they like about it and how they use it. Our readers are fairly evenly divided between persons with SCI and ABI, researchers, and clinicians. Despite your individual interests, almost half of you indicate interest in reading articles on both SCI and ABI. In support of this statistic, one reader wrote, My professional interest is concussions specifically. However, I don t feel the newsletter should change because my interest is more specific. Most of you find the publication useful (no one said it wasn t) and except for the sometimesawkward page continuation from the back page, most found the layout and readability good. In general, feedback was overwhelmingly positive with comments like, Keep it up, All info is useful, I like it the way it is. Some highlights include the fact that almost three quarters of you read the entire issue, a rare occurrence with publications these days (we must be doing something right!) The best news? 52 percent of you have passed the issue on to someone else such as a friend, family member or co-worker. Thank you if you are one of these wonderful people. You increase our readership by this amount! We value all feedback on the publication (and for those wondering, yes, we have eliminated that back page turn). Please do not hesitate to write or us anytime to give your comments and suggestions. info@onf.org Increase awareness that this resource exists, and the various ways to access the information. I like the ABI info as I also have mild ABI. 7

8 Getting it Right! Shared-Cared Saved our Lives Many individuals with a moderate to severe brain injury struggle with serious mental health issues. Having such a complex condition means a challenging life for both the person and their family. Many spend time in and out of community hospitals where they may not receive specialized treatment appropriate for people with ABI. These same individuals can be blocked from community-based services because they don t fit eligibility criteria. It could be because of their past history of challenging behaviour or simply because most agencies provide mental health or ABI services but not a combination. The results are devastating. Too often, the person with ABI ends up with persistent conflicts with the law or living on the street. Families burn out, exhausted from trying to cope every day. Crisis hospital stays are frustrating because there is no consistency in care, or in the health practitioners assigned to the individual. New model brings hope In spite of this serious reality, there is reason for optimism. For the past 4 years, Carolyn Lemsky, Clinical Director at Community Head Injury Resource Services of Toronto (CHIRS) has been working on building collaborative relationships with mental health and addictions providers. ONF funding has supported the development of models of collaboration and crosstraining so that we can integrate care, says Lemsky. When the care is integrated, we hear from individuals that they have finally found the right kind of care. Linking inpatient with outpatient care The shared care model was originally set up between Reconnect Mental Health Services and CHIRS, and then expanded to include Ontario Shores Centre for Mental Health Sciences. Ontario Shores is a hospital that specializes in inpatient psychiatric assessment, treatment and programing. With integrated care, providers share patient records, and as a team (and with the family) determine how to meet the individual s needs. The resulting plan provides integrated treatment for all of the clients needs and includes both inpatient and community care for the long-term. There is consistent care and they know where to go when they require additional or emergency support. A success story Lemsky describes a success story where her team was supporting an individual with both ABI and mental illness but his behaviour was too erratic, even with the help of community Mental Health Services. With the partnership in place, they were able to get him admitted to Ontario Shores where he received both medical and behavioural intervention supported by CHIRS. The man returned to the community with the support of CHIRS, and Ontario Shores now provides follow-up as needed. In the past, Lemsky, explains, a person like this man might have remained for years in hospital or cycling through emergency departments. When we have co-care in place like this, Lemsky says, clients benefit because they get the care they need most, families benefit because they see a treatment plan in place with consistent providers, and clinical practitioners benefit because now they can spend their time on clinical issues instead of searching for or fighting for more services. Next Steps: Integrated Funding With ongoing support from ONF, Lemsky s current projects include working with mental health and addiction partners to develop integrated funding models for concurrent ABI with mental health and addictions. 90 Eglinton Avenue East, Suite 601, Toronto, Ontario, Canada M4P 2Y3 Tel: (416) Fax: (416) info@onf.org Website: