Access to Brain Care: Navigating the Unknown, Enduring the ...braininjurycanada.ca/wp-content/uploads/CONF2014_Jane_Clark_Robe… · Access to Brain Care: Navigating the Unknown,

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Access to Brain Care: Navigating the Unknown, Enduring the Maze

Notes from the Frontline: Concussion Survivor Views

Jane Clark–Foster, BSc (Biochem), LLB, © 2014 Brain Injury Association of Canada’s Annual Conference

Sept 25/14 Crowne Plaza, Gatineau, Quebec

© Clark Foster 2014 2

AGENDA Access to Treatment

1. Detecting expertise • Issues • Possible solutions

2. Funding treatment • Issues • Possible solutions

3. Wait Times • Issues • Possible solutions

4. Coordinating treatment • Issues • Possible solutions

“The key for optimal recovery is to receive the right treatment, delivered the most effective way, in a reasonable time frame” - Ontario Faces of Neurotrauma 2013-14 Report, p.27


Access Issues: Finding, Funding, Waiting, Coordinating


1. Detecting

“… Interviews with patients reveal a common experience regarding the lack of knowledge among those affected and professionals alike about the nature of persistent post concussive symptoms and where services, if any, are available” – Ottawa Rehab Business Plan, p. 8


Phase I: No energy or ability to identify:

• what services • locate services

(where or who) or • undertake services

Phase I: The Cave Phase

Quiet dark isolated place No activities Quiet pets & hand-holding welcome

Detecting: Issues


Phase II: With some energy/ ability to find services, now introduced to characteristics of brain injury that, among other things, create access barriers:

1) Unfamiliar 2) Complex 3) Uncertain

Phase II: The Couch Potato Phase Some mobility/ journeyed to sofa Some talking & activities like some meals with family Pet has by now broken no sofa rule

Detecting: Issues


1) Unfamiliar Do not even know what symptoms to look for let

alone appropriate services to treat them

not “everyday” experience or terms for patients or physicians outside brain injury community

“invisible” injury, few objective visible diagnostics

Detecting: Issues

© Clark Foster 2014

“2.3 Limitations in health care services … identified … The scoping review and key informant interviews documented a lack of knowledge or awareness regarding neurological conditions among service providers and a limited availability of much needed services for Canadians living with a neurological condition, particularly for those living in rural areas.” - Mapping Connections: An understanding of neurological conditions in Canada, September 2014, p.52

Detecting: Issues


2) Complex Symptoms hard to identify needs (quite apart from other layers of

complexities including heterogeneous population issues)

• large number of seemingly disparate symptoms requiring separate expertise/ interactions are not well understood

• “symptoms are spatially & temporally dynamic and affected by antecedent conditions” – son Alex Foster, Masters Geography student

tricky to isolate symptoms and causes

Detecting: Issues


2) Complex Symptoms (cont’d):

Fickle: seemingly resolved symptoms reappear

“New” ones emerge as “masking” symptoms resolve or try to resume activities

Challenges articulating & communicating the symptoms, their scope and effect to medical team, any insurers & employers

Detecting: Issues


3) Uncertain state of the art/ treatment adds to difficulty identifying services

Ample controversy/ dearth of accepted practices. Starting to change [for ex 2ed Guidelines for Concussion/ mTBI & Persistent Symptoms: Sept 2013 per Marshall et al., On Neurotrauma Foundation]

Rapidly evolving research on multiple fronts

New treatments may not yet meet robust standards

Detecting: Issues


Where are the evidence based studies?

It needs a Cochrane review

Physician Office

Please help me now

Physicians Professional Organizations/ Peers

P-value?

Government / Hospital Board /

LHIN

Evidence based

standard and/or

business case

and/or political

case

Detecting: Issues


Bridge gap from brain injury community to: public family physicians (FP) & ER with accessible information in user

friendly format that includes: local content /service providers

Tell patient about the resources, what to look for & give a template log for symptom reporting

Detecting: Solutions


Checklist for FP’s that lists: •common symptoms •potential treatments & guidance on when to start (timing or milestones)

•local referral options appended to existing guidelines or other tools.

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Sample checklist handout for treating physician that identifies symptoms, potential referrals & when (time or milestone)



• ER / FP’s offices (often initial contact point) are good locations for dissemination

• ER could pass on information for FP’s with ER paperwork

• If printing too expensive and dates too fast, provide small cards identifying useful websites



Resource examples for survivors/ families: • Brain Injury Association of Canada’s Information

and Resources Site http://biac-aclc.ca/2012/08/28/concussion-information-and-resources

• ABI Clinic, Ottawa Hospital Rehab Centre’s Coping with Brain Injury guides

http://www.health.gov.on.ca/en/public/programs/concussions/resources.aspx

• UK Headway Brain Injury Association guides https://www.headway.org.uk/minor-head-injury-and-concussion.aspx

• BC Injury and Research Prevention Unit’s Concussion Awareness Training Tool

http://www.injuryresearch.bc.ca/education/concussion-awareness-training-tool-catt


http://biac-aclc.ca/2012/08/28/concussion-information-and-resources

http://www.health.gov.on.ca/en/public/programs/concussions/resources.aspx

https://www.headway.org.uk/minor-head-injury-and-concussion.aspx

http://www.injuryresearch.bc.ca/education/concussion-awareness-training-tool-catt


Phase III: “RTAT” Rest with Therapies As Tolerated

Mainly rest

Some exercise

Some therapies

Detecting: Solutions Good to go: Now comes funding & waiting


2. Funding Treatment “Outpatient care is often the least organized branch of ABI care. Patients discharged home often receive no therapy or minimal support depending on their level of need and payment status.” - 3. Efficacy and Models of Care Following an Acquired Brain Injury, N Cullen, 2013 at 36 “Timely service is further compromised by inequities to access due to the paucity of publicly funded specialist services …such as psychology, physiotherapy, speech-language therapy and occupational therapy, services that are commonly found in rehabilitation centres.” – Ottawa Rehab Business Plan, p.1


• Public funding source (government) • covers largely physicians

• Private funding sources • Insurance (health, auto) • Personal (families) • Charitable organizations

“There are differences in when, where, and how a person is injured that create funding inequities and barriers for some individuals with concussion/ mTBI.” – Concussions Ontario Access Project

Funding: Issues


• Need private funding to cover:

• most non-physician exams such as neuro-optometry, auditory processing, and neuro psych assessments

• most therapies (eg. vestibular physio, occupational, vision, osteopath, massage)

• medical equipment/ coping tools (assorted shades of sun glasses, prism glasses, ear plugs, muffs, cancelling headphones, vitamin supplements, taxis & home help)

Funding: Issues


Physicians: (limited visits; if >1 visit, weeks or months interval) With some exceptions (eg ABI physicians), the general focus is on: Structure Macro level Meds Referrals

___________ Therapists: (several visits, often weekly) Functional rehab Everyday coping strategies

Funding: Issues


For optimal recovery, survivors need access to these largely private services to:

• implement physicians’ recommendations • use time (often weekly) & expertise of clinical therapists and other specialists

• provide key information to physicians for overall assessment and prognosis

Funding: Issues


•Menu of approved publicly funded services:

• Treating physician selects therapies appropriate for individual patient

• May be a monetary cap

• May coordinate to exhaust any private insurance first Ex: CHEO dental clinic has a cap for mouth anomalies (up to $30,000 and exhaust private insurance first)

Funding: Solutions


Expand:

• capacity

• geographic reach

of acquired brain injury clinic model incorporating specialists on staff & from community

Funding: Solutions


3. Wait Times

1 year wait from here

Compounding waits of months

& years from further referrals by brain expert

“… capacity remains a

significant concern as the waiting lists for these programs can be many years

long, making access to services

insurmountable” – Toronto ABI Framework, p.8


•During the wait: •may be losing optimal healing window •may be exacerbating issues •still have to live & cope while waiting •as time elapses, harder to reintegrate

• The sooner patients begin rehab, the better their functional outcome León-Carrión J, Brain Inj. 2013;27(10): 1119-23. (Severe brain injury).

Wait Times: Issues


Section 2. Management of Concussion/mTBI Grade

2.5 For patients who have 1) co-morbidities or identified health or risk factors (Table 1.1) and do not improve by one month, or 2) persistent symptoms at 3 months post-injury, it is recommended that these patients be referred for more comprehensive evaluation to a specialized brain injury environment (see Appendix 2.1).

A

Ontario Neurotrauma Foundation, Guidelines for Concussion/mTBI & Persistent Symptoms, 2ed. Recommendation 2.5 http://onf.org/documents/guidelines-for-concussion-mtbi-persistent-symptoms-second-edition

Wait Times: Issues

http://onf.org/documents/guidelines-for-concussion-mtbi-persistent-symptoms-second-edition
















“Average wait time is too lengthy, and standard of care must dictate a shorter wait time” - Concussion Ontario’s 3rd Concussion/mTBI Summit 2013, p.8

• Acquired brain injury (ABI) centre can be 1 year from referral

• Compounding waits of further ABI centre referrals: eg tinnitus clinic, add 1 year

• Months for other specialists (neurology, ENT)

• Can be months for therapy program

Wait Times: Issues


Wait Time Information Tracked in Priority Areas http://waittimes.cihi.ca/

• Acquired brain injury not among “five priority areas” Agreed in 2004 by Canada's first ministers: cancer treatment, cardiac care, diagnostic imaging, joint replacement and sight restoration. Wait time information reported and collected for: Hip replacement Knee replacement Hip fracture repair Cataract Radiation therapy MRI CT Coronary artery bypass graft (CABG) • Acquired brain injury wait times not readily available & where reported, counted from referral, not injury

Wait Times: Issues

http://waittimes.cihi.ca/


• Count time from injury not referral

• In the interim, give access:

•by family physicians to ABI experts for summary consults

• by patients on a regular basis to ABI triage nurse (invaluable resource) to: • give guidance • direct to available services and • organize for likely other queues

Wait Times: Solutions


Wait Times: Solutions


Start line for seeing experts who can help

Good to go x3: Now comes coordinating

1. Found

2. Funded

3. Waited


4. Coordinating Treatment

Shades of blind men & the elephant? - Except no talking with each other – only via reports, if any. - Clues are from compromised patient in timed sessions


Coordinating: Issues “Fragmentation of services and long wait lists for symptom specific assessment and treatment of PCS symptoms are endemic”. – Ottawa Rehab Business Plan, p.8

1) Large # of unconnected professionals 2) Treatment of a symptom unconnected to:

• other ongoing treatments and/or • in certain cases, brain injury

3) Central role defaults to patient or family • have mounds of details but no expertise • those with expertise (providers) limited to

select details. Missing information may affect assessment & treatment.


1) Large number of unconnected professionals:

•Professionals assembled from disparate sources: • FP referrals • ABI referrals • therapist referrals • insurance mandates • may be from family/ friends/ colleagues

• Do not know or speak to each other • Only one fully connected is patient/family

Coordinating: Issues


2) Symptom Specific Treatment:

•Specialist may look at a symptom in isolation (basis of referral)

• Expertise may be: • peripheral (eg ears), not central (brain) • macro/ structural, not functional • extensive in speciality but lacking in brain injury

•Make recommendations/ assign exercises that may conflict with others and/or be affected by information from others



3) Patient as Default Coordinator. So many symptoms & professionals, so little time…

Reports may not: • be done (additional cost for private services) • be accessible to patient or end up in file • be read (no time /extraneous to referral)

No mechanism to deliver reports: • to those outside referral circle (eg public to private and vice versa) • in interim (after referral but before appt)

Coordinating Treatment Issues


Treatment is largely based on self assessed symptoms. Falls to patient/family in any one appointment to accurately:

• report on multiple current symptoms

• convey main points from or progress with multiple other providers, as relevant

• understand & digest assessment and/or prognosis and treatment directions

all in a timed setting

and while coping with a brain injury

Dream world

Often



Integration Ideal

“The rehabilitation of acquired brain injury (ABI) patients involves a comprehensive effort by several members of an interdisciplinary team including physicians, nurses, and occupational therapists.” - 3. Efficacy and Models of Care Following an Acquired Brain Injury, N Cullen et al, 2013 at 21



Reality is that there are aspects of integration & fragmentation.

Case managers & team meetings referenced in literature but application is inconsistent



• Expand designated nurse/ case manager model to every patient if meets criteria for referral to ABI to:

• ensure reports are distributed appropriately

• identify conflicts/ gaps • flag priority issues

• Periodic team meetings (full or partial) of publicly and privately funded professionals for all patients

Coordinating: Solutions


Agreed templates for key information from each discipline so others in treating team can access (electronic if access available) Booklets like Ottawa Heart Institute’s – each specialty professional completes summary information on designated page and patient brings to each appointment

Coordinating: Solutions


Family Physician

ABI Centre

Private / Community Assessors & Therapists

Staff Assessors/ Therapists

Create & publicly fund sufficiently resourced centralized hubs (eg expand ABI centre model) that are known to medical community & public that can lead and coordinate, with remote service capability

Concluding Points


• Tame those variables that can be tamed for this multi faceted complex injury existing in a research frontier • Brain injury recovery is riddled with enough challenges for survivors and their families. On these access barriers, we can do better.

Concluding Points


Brain Injury Association of Canada’s Information and Resources Link: biac-aclc.ca/2012/08/28/concussion-information-and-resources Concussions Ontario: Evaluation of Access project. www.concussionsontario.org/ whats- the-problem-eo/ & 3rd Concussion/mTBI Summit 2013, p.8 www.concussionsontario. org/wp-content/uploads/2013/05/Proceedings-3rd-Concussions-mTBI-Summit.pdf Cullen et al., “Evidence-Based Review of Moderate to Severe Acquired Brain Injury, 3. Efficacy and Models of Care Following an Acquired Brain Injury”, 2013 at 21, 36, www.abiebr.com/sites/default/files/modules/Module%203-Efficacy%20and%20Models%20of%20Care%20Following%20an%20ABI-V9-2013.pdf Guidelines for Concussion/mTBI & Persistent Symptoms: 2ed Sept 2013 per Marshall et al., Ontario Neurotrauma Foundation http://onf.org/documents/guidelines-for-concussion-mtbi-persistent-symptoms-second-edition] Hamilton Health, Concussion in Adults Booklet: ttp://www.hamiltonhealthsciences.ca/ documents/Patient%20Education/ConcussionAdults-trh.pdf Neurological Health Charities Canada, The Public Health Agency of Canada, Health Canada, The Canadian Institutes of Health Research, “Mapping Connections: An understanding of neurological conditions in Canada, The National Population Health Study of Neurological Conditions”, p.52, September 2014, http://www.phac-aspc.gc.ca/publicat/cd-mc/mc-ec/assets/pdf/mc-ec-eng.pdf

References

http://biac-aclc.ca/2012/08/28/concussion-information-and-resources

http://www.concussionsontario.org/whats-the-problem-eo/

http://www.concussionsontario.org/whats-the-problem-eo/

http://www.concussionsontario.org/wp-content/uploads/2013/05/Proceedings-3rd-Concussions-mTBI-Summit.pdf

http://www.concussionsontario.org/wp-content/uploads/2013/05/Proceedings-3rd-Concussions-mTBI-Summit.pdf

http://www.abiebr.com/sites/default/files/modules/Module 3-Efficacy and Models of Care Following an ABI-V9-2013.pdf

http://www.abiebr.com/sites/default/files/modules/Module 3-Efficacy and Models of Care Following an ABI-V9-2013.pdf
















http://www.hamiltonhealthsciences.ca/documents/Patient Education/ConcussionAdults-trh.pdf




http://www.phac-aspc.gc.ca/publicat/cd-mc/mc-ec/assets/pdf/mc-ec-eng.pdf












Ontario Neurotrauma Foundation 2013/2014 Annual Report, “Faces of Neurotrauma”, at p.27, http://onf.org/system/attachments/251/original/ONF_2014_AR_EN.PDF Ottawa Rehab Business Case: Susan Pisterman MBA PhD for The Centre for Rehabilitation Research and Development, The Ottawa Hospital Research Institute, The Ottawa Hospital Rehabilitation Centre, “Business Case and Operational Plan for Establishing a Post Concussion Syndrome Research-Based Clinic June 2012” http://www.concussionsontario.org/wp-content/uploads/2012/11/Champlain-PCS-Clinic-Report-Final.pdf Ottawa Hospital Rehab Centre Acquired Brain Injury Stream’s Guides: Coping with brain injury: A guide for caregivers and family; and Coping with brain injury: A guide for patients ww.ottawahospital.on.ca/wps/portal/Base/TheHospital/ClinicalServices/ DeptPgrmCS/Departments/RehabilitationCentre/OurProgramsAndServices/ABI Toronto Acquired Brain Injury Network, A Framework for the Future Planning of Publicly Funded Acquired Brain Injury Services in Toronto, at p., 8, http://www. abinetwork.ca/ uploads/File/About%20Us/ABI-Planning-Framework-(Mar-2006).pdf

References

http://onf.org/system/attachments/251/original/ONF_2014_AR_EN.PDF

http://www.concussionsontario.org/wp-content/uploads/2012/11/Champlain-PCS-Clinic-Report-Final.pdf

http://www.concussionsontario.org/wp-content/uploads/2012/11/Champlain-PCS-Clinic-Report-Final.pdf

https://www.ottawahospital.on.ca/wps/portal/Base/TheHospital/ClinicalServices/DeptPgrmCS/Departments/RehabilitationCentre/OurProgramsAndServices/ABI

https://www.ottawahospital.on.ca/wps/portal/Base/TheHospital/ClinicalServices/DeptPgrmCS/Departments/RehabilitationCentre/OurProgramsAndServices/ABI

http://www.abinetwork.ca/uploads/File/About Us/ABI-Planning-Framework-(Mar-2006).pdf











Thanks!

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Access to Brain Care: Navigating the Unknown, Enduring the ...braininjurycanada.ca/wp-content/uploads/CONF2014_Jane_Clark_Robe… · Access to Brain Care: Navigating the Unknown,