Three tough SCI health issues tackled at November summit series

Specialists, researchers, people with SCI, policy makers collaborate to identify paths to potential solutions

People living with spinal cord injury face complex health issues with day-to-day functions that others take for granted. Identifying current barriers, recommendations for potential solutions and approaches to address three of these issues – access to primary care, urological and pain management – have emerged as a result of three Ontario Neurotrauma Foundation summit sessions held in November.

Healthcare providers, researchers, those living with SCI  and policy makers focused on building a common understanding of the current state and looked towards what might be needed and possible to move to more consistent evidence-based care.

Need for a cohesive approach to pain management

Dr. Eldon Loh, lead researcher of the team at the Lawson Health Research Institute in London, Ontario, chaired the first of the one-day summits. His team launched Clinical Practice Guidelines for Managing Neuropathic Pain with Patients who have Experienced a Spinal Cord Injury  last summer. Summit participants focused on what might be possible from basic science to implementation projects.

“Our discussion ranged from a national pain strategy for those living with SCI to better co-ordination of all research efforts to connecting with organizations like the Multiple Sclerosis Society or the Canadian Pain Coalition to find common ground and share our learning,” says Dr. Loh. “There is a consistent lack of strategy and access to services to help anyone adequately manage neuropathic pain. There would be a great beSummit_pic_croppednefit in establishing a cohesive approach.”

Interest in research and best practices into non-pharmacological treatments is a growing area says Dr. Loh. He believes that ONF has a role to identify and advocate for increase funding for research in the area of neuropathic pain management. “ONF has played an important role in bringing people to the table, we need them to continue this,” he says.

Each of the three meetings had its own unique agenda and atmosphere, says facilitator Jerry Mings. He was the common connection for the sessions. “In all meetings the focus was listening to the voice and the needs of those with SCI and the complex health care issues they faced. There is a genuine desire to find solutions,” he says.

(Photo: Neuropathic Pain Summit organizing team)

Neurogenic Bladder Surveillance and Treatment Guidelines hold promise

At the Urohealth Summit meeting, four challenging bladder management issues were identified and discussed and preliminary solutions were identified:

  • Limited resources, skills and access,
  • Standardization of care and practice in Canada,
  • Diagnosis and treatment of urinary tract infection,
  • Expertise in complex surgical procedures.

“One of the emerging action items, Canadian Neurogenic Bladder Surveillance and Treatment Guidelines, holds a lot of promise to address  these four health areas,” says Urohealth Summit Chair Dr. Blayne Welk who is affiliated with the Lawson Health Research Institute.

“While several societies have published guidelines, it was generally recognized that none of these were ideal or practical. A rigid evidence-based approach will not be possible. The group determined any guidelines must use expert opinion and consensus, and be informed by the best available evidence,” he added.

More than 20 specialists in urological care from across Canada participated in the summit.

“Each Chair worked hard to ensure the day was well-spent by participants,” says Jerry. “They realized their discussions were taking place in the middle of what is a time of change for the Ontario health system and their efforts could influence that change. They incorporated presentations, panels and working sessions, and the voice of those with SCI was imbedded throughout.”

Better understanding of the primary care challenges and opportunities

The final summit explored the issue of access to primary care and supporting healthcare providers in their work with people with SCI. Dr. Joseph Lee and colleague Dr. Jamie Milligan (both from the Centre for Family Medicine in Waterloo, Ontario) and more than 60 participants heard the kick-off talk from Deputy Minister Dr. Robert Bell, Ministry of Health and Long Term Care (MOHLTC). Dr. Bell emphasized the importance of primary care health providers in the delivery of the province’s “Patients First” agenda in his keynote address.

Dr. Lee noted that the summit participants found the perspectives offered by patients and family physicians to be very powerful in identifying the current gaps and opening the door to opportunities to improve primary care for this group of patients.

“Many of the barriers and challenges we have identified were re-affirmed including knowledge gaps, physical, systemic and most particularly attitudinal barriers,” says Dr. Lee. “The group discussions were exceptional and helped increase the understanding of both the challenges and opportunities.”

While there is much work to be done there was a general consensus that best practice templates and guidelines – imbedded in an interdisciplinary model based on collaborative and consistent communications processes – would support family physicians to become more knowledgeable and confident in caring for those with SCI. And those with SCI would be able to access consistent care in their communities.

With a preliminary pathway identified the next steps will include a white paper that will define and further explore priorities and follow up with the MOHLTC on links to a potential regional model or link to the Local Health Integration Networks (LHINs).

“There was lot of enthusiasm for moving an agenda forward,” says Dr. Lee. “We are looking to ONF to keep an eye on the bigger picture, and ensure there are strong links, including information-sharing between all three groups: primary care, urohealth and pain."

A webinar of presentation from the Primary Care summit, with an introduction from Premier Kathleen Wynne, was hosted by SCI Ontario January 26. The presentation materials are available on the SCI Ontario website.