Accessibility Strategies for People with Spinal Cord Injuries in Primary Care by Dr. Mary Ann McColl

I’m going to talk to you about primary care and I will try to make it relevant to your context and give you a sense of how you might and your clothes on behalf of yourself and your clients interact with the primary care sector to get the best possible service for people with spinal cord injuries so I will try to increase your awareness of the primary care context in Ontario situate people with disabilities within that context particularly people with spinal cord injuries we will explore barriers to effective primary care for people with spinal cord injuries and I will tell you a little bit about some of the research that we’ve done to try to help family doctors do their best for their patients with spinal cord injuries so I’m going to invite you to begin by thinking about your own experiences in primary care try to remember your last visit to your own primary care setting remember how long ago it was what you went there for whether or not you got what you were looking for and what the setting looked like and felt like and then I’m going to invite you to think about your clients perhaps or people with spinal cord injuries and how they might encounter that setting in in other words your family physicians office and what barriers they might encounter in trying to receive a good standard of primary care and that’s what we’re going to talk a little bit more about I want to begin with a definition of primary health care because it’s a term that has been thrown around a great deal lately and not everyone means the same thing buy it when I talk about primary care I mean those services offered at the first point of contact with the healthcare system the official definition of primary care offered by Health Canada is up there on the screen health promotion illness and injury prevention diagnosis and treatment I want to also talk about family physicians family medicine family physicians are a peculiar breed of physicians who are devoted to a long-term relationship with their patients and as such they don’t like to be called generalists they’d rather yes they don’t like to be called generous generalists they think of themselves as specialists but specialists in a lifelong relationship with their patients now many other physicians also have long-standing relationships with their patients but family physicians sort of pride themselves on the cradle to grave kind of relationship with their patients there’s guilt clinicians that work in the community and that are responsible for a defined caseload of patients and I just want to take a moment to talk about this word patients I know that people living in the community often don’t like to think of themselves as patients but that’s how we’re thought of in our primary care settings when we go to our family doctors were thought of as being their patients and while that word may have some negative connotations it also has the positive connotation that they take responsibility for us and our health at some level and so I’m going to invite you to hear the good part of that word patient and perhaps not the disempowering sort of helpless version of that word why is it important for us to understand the primary care context and cooperate with primary care well the main reason it’s the first place that most people go when something goes wrong it’s their first course redress or assistance when they encounter a health problem family physicians are devoted to the overall health of their patient and I think that you will find that they are committed to a model of health that is more or less compatible with your own view of your own health I should just mention I’m not a family physician and you probably realized by now that I am a fan of family physicians and have had the good fortune to work with a number of very committed family physicians so I just wanted to make that declaration in most primary care settings the caseload is

typically around 2000 1500 to 2000 patients per physician and that caseload is divided into these three broad categories in the bottom half is those seventy two percent of people who go to their family doctor with an acute concern leave with some sort of treatment and go away on their way to being fully healthy again that seventy two percent of the caseload consumes about one-third of the resources of the practice then in the middle there’s another group of about twenty twenty-one twenty-two percent of the practice that have one chronic condition for the most part the family physician can look after the needs or family physician and a nurse can look after the needs of those patients and again they use up about a third of the resources of the practice then that tiny triangle on the top is where people with spinal cord injuries are found people with multiple chronic conditions multiple needs from the primary care sector both social and medical needs and inevitably need the services of more than just medical or professionals need the services of a multidisciplinary team so you begin to realize that most family practices won’t have more than one or two people with spinal cord injuries in them if any and family doctors don’t get a lot of experience with people with spinal cord injuries may have only had one person with a spinal cord injury in their practice in their entire careers the kinds of issues people with disabilities bring to primary care some of them are the same as the rest of the population acute complaints and new health issues issues that arise normally in the process of aging and issues of prevention and health promotion but for people with disability there are also these other issues which you all know too well health issues directly associated with the disability and complications of the original injury or disability we’ve learned a little bit about how people with disabilities use the health care system and how that’s different from non-disabled people people with disabilities according to the national population health survey make about three times as many visits to their family physician as non-disabled people and this goes across all ages so they make about six visits a year and if you remember back to the question that I asked you at the beginning when I asked you to imagine your own last visit to primary care you probably made one or two visits in the in the last year in spite of all that I’m going to call it excess utilization of health services people with disabilities also report three times as many unmet needs in the health care system unfortunately the youngest and oldest and those with the most chronic conditions report the most unmet needs so those are the greatest needs report the most unmet needs in talking to people with spinal cord injuries about how they use the health care system we’ve learned that people evolve complex intricate maps that guide them through their own personal health care system and rubrics for decision making about what problems to take to whom when this isn’t from our own research but it intrigued me to learn from another study how people with spinal cord injuries engage with health professionals in many instances they tolerate the inadequacies and the providers knowledge in return for a good relationship and so they preserve the relationship at the expense of the expertise in other instances they become educators of service providers in other instances they become managers or coordinators of care some people take on the responsibility of doing research on behalf of their family physician or their service providers some people substitute institutional care or emergency care for family physician provided primary care and other people use specialists for all their health needs and in fact don’t don’t use a primary care physician for the purpose that they are intended our own research has showed that people with disabilities encounter barriers at six different points when trying to receive service they have a more difficult time finding a doctor a more difficult time getting an appointment getting into the practice

actually gaining access to the practice using the equipment and facilities within the practice using the space using the office space and examining space and receiving a reasonable standard of care we’ve identified four types of barriers and I’m going to talk to you a little bit about each of these types of barriers and how the research that we’ve done over the last ten years has helped us to help family physicians overcome these barriers so we look at physical barriers attitudinal barriers expertise related barriers and systemic barriers looking particularly at overcoming physical barriers we did audit an accessibility audit of 74 practices family practices in southeastern ontario and found that 20 of them were totally inaccessible the average score was seventy two percent so I work in an academic environment and that’s kind of what we would consider a low be so I don’t know if you consider that a satisfactory mark is probably not what you aim for only fifteen percent of family practices that we looked at had an adjustable exam table and so what most people reported to us was that they examined people’s disabilities in their wheelchairs and just sort of tried to poke around and you’ll feel what they could feel or else just took the patient’s word for what was wrong so in your package you have a checklist that looks like this when you fold it in half and this was the tool that we use to do this audit and I’ve included it in the package so that you can use it and i invite you to copy it and use it and to go on the canadian disability policy alliance website and make more copies and help yourself to it it is a quick walk through a five-minute walk through of a family practice you may or may not need to speak to the physicians that we found in most instances you can speak to an office manager or a receptionist in and get questions answered so i invite you to avail yourselves of that both on your own behalf but also on behalf of of your clients another project that we did in collaboration with the Canadian paraplegic Association Ontario was to reach out to the 200 family health teams in Ontario and 25 nurse practitioner led clinics these family health teams are kind of a flagship program for this government and we said given that you’ve put so much stock in family health teams perhaps it would be nice if they were accessible to people with disabilities and the best thing that you can do is to make at least one examining room accessible and by that we mean having either a ceiling track lift or an adjustable exam table that allows people with disabilities to be properly examined when they come to their family doctor so we got approval from the Ministry to cost share the cost of this equipment we sent information out to the 200 family health teams told them exactly what to put in their budget so that the ministry would approve it at latest count we had reached out to six no excuse me 275 and I think 58 had acquired the equipment so we’re due to do another update and check with them just how many of them have got about getting the equipment but it was a sort of a tangible outcome that we were very pleased with we did a survey of family physicians and asked them how their experience with their patients with disabilities was different from their patients that didn’t have disabilities what they told us was that they were less likely to examine their patients with difficulties because of the difficulties of dressing and undressing and communicating about why they had to do what they had to do and so they just tended not to get examined as diligently physicians also family physicians also told us that if a person needed that kind of distance dressing and undressing that they required them to bring their own assistant that they couldn’t depend on clinic staff to help them transfer or dress and undress and so another barrier to access was sort of erected by requiring another person to be involved in the appointment physicians told us that they were less attentive to sexual and reproductive issues and less attentive to preventive healthcare with their patients with disabilities simply

because there were so many things on the list of issues that patients wanted attention to that those things sort of fell off the bottom of the list visit after visit after visit the customer service standard of the accessibility of for Ontarians with Disabilities Act is one way of ensuring equity and an appropriate standard of care for people with disabilities in Ontario and it’s a great tool for advocates for people with disabilities it says that the disability must be considered when communicating with a customer or a client or a patient for that matter with a disability that service providers have to allow assistive devices they have to allow service animals they have to welcome support personnel they have to let customers know when accessible services are not available and they have to invite customers to provide feedback and so we’ve tried to help family physicians to understand this information but it’s an interesting opportunity for advocacy some of you may be familiar with the healthcare connect program in Ontario healthcare connect is at an arm’s length agency of the Ministry designed to help people find family physicians in their own communities we worked with healthcare connect to try to see if people with disabilities had a better or worse record than their non-disabled contemporaries at finding a family physician it turned out that disabled patients had the same wait time and the same great record of being linked with family physicians as their non-disabled counterparts but the healthcare connectors which are the staff that act as the liaison between the patient and the family physician the healthcare connectors indicated that they worked a lot harder for their patients with disabilities to achieve that that link that some physicians offices simply were not willing to take patients with disabilities of course they couldn’t do that explicitly because it’s a human rights violation but but there were there were physicians offices that simply said they couldn’t they couldn’t do it and so the healthcare connect staff were very very committed to their patients with greater needs and if you have a client who’s looking for a family physician I commend the healthcare connect program to you and in particularly the healthcare connectors as they’re called the workers who helped to Lee A’s patients with family physicians in the course of another study we did a survey of the knowledge of family physicians about spinal cord injury and the average score was 2.9 out of 5 and that’s an average score out of the number of questions which is again kind of a low be at the high end of poor what family physicians felt least capable of dealing with or least prepared to deal with was when to refer and to whom social and community supports that were available issues of access and human rights medications covered by the provincial formulary current literature on spinal cord injury long term effects of spinal cord injury and treatments for common spinal cord injury issues so I suggest that we can’t ask family physicians to know every single last thing about every condition that they treat most of them as I mentioned before will only have one or two patients with spinal cord injuries and so they seek resources that can help them to understand the complexity of the patients that they deal with and in many instances I suggest that you may be in a position to be those resources and it’s been my experience that family physicians have welcomed that input and basically are looking for anything that can help them to do a better job for their patients we did a chart audit in again 74 physicians offices family physicians offices in southeastern ontario and compared a guideline compliance on five conditions between disabled patients and dawn disabled patients and we found that guideline compliance was better the more time physicians had to devote to their patients and so salary practices it turned out were the ones that were able to offer the longest appointments and the most flexibility in terms of how and when they saw patients so practices like community health centers and they

performed better in terms of guideline compliance on these four conditions urinary tract infection care preventive health care hypertension and diabetes they were no different on skin care so it seems like skin care is equally well dealt with regardless of the type of practice the take-home message that I offer to you from this one is to encourage your patients to ask for more time most family practices have longer appointments available but you have to ask for them and patients with disabilities certainly are the ones who need those longer appointments so you may have the opportunity to encourage them to ask for those appointments we did a scoping review on the literature that is out there in the primary care literature helping family physicians to understand spinal cord injury and some of the care guidelines and issues faced by their patients with spinal cord injury and that article is coming out in the Canadian family physician journal this fall so watch for it it’s been a long time in press and we’ll be very glad to see it out there so you may wish to direct family physicians to it when it comes out the last thing that I want to draw your attention to is a program called actionable nuggets and this was a research project that we undertook to get information into the faces of family physicians about spinal cord injury and one of the things we realized from our long experience of dealing with the family physicians is that it has to be quick it has to be to the point it has to be attractive and attention-getting and it has to tell them what to do not send them off to read something not send them off to consult a website but say just do this we’ve done the homework we’re convinced you know just do it so we designed this series of postcards and I’ll put them up here for you to see that’s just a photograph of the front and back of the cards the whole package looks like this and there’s there’s 20 cards and they covered 20 of the most pressing issues that family physicians encounter with people with spinal cord injuries they arrived one a week for 20 weeks at the offices of I think about 60 family physicians in Ontario newfoundland in australia that were our pilot sample and if nothing else they raised the awareness of family physicians about spinal cord injury family physicians love them they said things like I love that I can read them standing up I love that they tell me exactly what to do I love that they don’t make me you know go away and read some great long thing and I love that they’re evidence-based and that they summarize a whole bunch of studies not just one study so we are currently working with the canadian medical association to get these nuggets actionable nuggets out to the 50,000 primary care physicians in canada and we think they’ll start to be delivered in january of 2013 so again something to watch for and to encourage your family physicians to watch for as you probably have heard the the National Health Accord is being reviewed and through the Canadian disability policy Alliance we took the opportunity to draw the attention of the health accord or the Senate committee reviewing the health Accord to the issues of people with disabilities in primary care and asked to them to include a recommendation that in their accountability framework the issues of people with disabilities in primary care be particularly targeted and insured and that recommendation has been adopted by the Senate committees so it would has been a good experience for us in terms of understanding the opportunity for advocacy and I encourage you to also if you have an opportunity like that to take it up the built environment standard of AODA will soon be enforced and it will be a great opportunity for advocacy wise primary care so important to people with disabilities they’ve been described as having a thinner margin of health which i think is a very interesting and evocative way to describe the potential multiplying effect of health conditions layered over top of a spinal cord injury people with disabilities have fewer opportunities for health maintenance and health protection an earlier onset of chronic diseases disabilities typically cause a prolonged course of illness or ill health and there are greater functional consequences of illness for people with disabilities so I thank you

for this opportunity to share our research and invite you to welcome opportunities to work with family physicians to do what they wish to do which is to provide their best possible care to their patients with spinal cord injuries thank you