understanding the needs of the “miserable minority”...knox, l., goldsmith, s. & rushworth,...

Understandingtheneedsofthe

“miserableminority”

Identifyinggapsintheprovisionofinformationandsupporttopeople

experiencingprolongedrecoveryafterconcussionandmildtraumatic

braininjury

DrLucyKnox LaTrobeUniversity

DrSuzyGoldsmith BrainInjuryAustralia

MrNickRushworth BrainInjuryAustralia

December2017

AnInformation,LinkagesandCapacityBuilding(ILC)Organisational

ReadinessProjectcompletedbyBrainInjuryAustralia.ThisProject

ContributestotheAustralianFederationofDisabilityOrganisations’ILC

ReadinessProjectfundedbytheNationalDisabilityInsuranceAgency

©KnoxL,GoldsmithS&RushworthN(2017) 2

Enquiries

DrLucyKnox

LivingwithDisabilityResearchCentre

LaTrobeUniversityVIC3086

Ph:(03)94793684

Email:[email protected]

www.latrobe.edu.au

DrSuzyGoldsmith

BrainInjuryAustralia

Ph: 0413587486 Email:[email protected]

https://www.braininjuryaustralia.org.au

CitationGuide

Knox,L.,Goldsmith,S.&Rushworth,N.(2017).Understandingtheneedsofthe“miserable

minority”:Identifyinggapsintheprovisionofinformationandsupportforpeopleexperiencinga

prolongedrecoveryafterconcussionandmildtraumaticbraininjury.Melbourne,Australia:La

TrobeUniversity&Sydney,Australia:BrainInjuryAustralia.

Acknowledgments

Thankyoutotheinterviewparticipantswhogenerouslysharedtheirstoriesofrecovery.


TableofContents

1.Describetheactivityundertakenbyyourorganization....................................... 4

2.Whataretheoutcomesoftheproject? .............................................................. 6

3.WhatdidyoulearnfromtheprojectandhowdiditrelatetothefiveILC

outcomeareas? ..................................................................................................... 8

3.1Whatdidwelearn?.................................................................................................. 8

ThemeOne:Initialtreatmentanddiagnosis.................................................................... 9

ThemeTwo:TheroleoftheGP...................................................................................... 11

ThemeThree:Specialistassessmentandrehabilitation ................................................ 13

ThemeFour:Accesstoinformation ............................................................................... 14

ThemeFive:Barrierstoapositiverecovery ................................................................... 15

ThemeSix:Emotionalconsequences ............................................................................. 16

ThemeSeven:Enablersofapositiverecovery............................................................... 17

ThemeEight:Long-termconsequences ......................................................................... 19

3.2HowdothefindingsrelatetothefiveILCoutcomeareas? ......................................21

ILCOutcome1:Peoplewithdisabilityareconnectedandhavetheinformationthey

needtomakedecisionsandchoices. ............................................................................. 21

ILCOutcome2:Peoplewithdisabilityhavetheskillsandconfidencetoparticipateand

contributetothecommunityandprotecttheirrights................................................... 24

ILCOutcome3:Peoplewithdisabilityuseandbenefitfromthesamemainstream

servicesaseveryoneelse. .............................................................................................. 27

ILCOutcome4:Peoplewithdisabilityparticipateinandbenefitfromthesame

communityactivitiesaseveryoneelse........................................................................... 30

ILCOutcome5:Peoplewithdisabilityactivelycontributetoleading,shapingand

influencingtheircommunity. ......................................................................................... 32

4.Howhastheorganisation-specificprojectcontributedtoyourorganisation

becomingILCready? .............................................................................................34

5.Whatwillyoudowiththeinformationgainedfromtheactivitiesundertakenby

yourorganisation-specificproject? .......................................................................36


1.Describetheactivityundertakenbyyourorganization

Upto20,000Australiansarehospitalisedwithatraumaticbraininjury(TBI)each

year(Helps,Henley&Harrison,2008).Datasuggeststhatthesignificantmajority(as

manyas85%)ofthispopulationarediagnosedwithamildtraumaticbraininjury

(mTBI)orconcussion.MostindividualswithmTBIandconcussionmakeafulland

uneventfulrecovery(Carrolletal,2004).However,thereisasignificantminorityof

people(10-15%)whodonotrecoverwithintheexpectedtimeframes.This

“miserableminority”(anestimated2,000-3,000Australianseveryyear)experience

persistentphysical,cognitiveand/orbehaviouraldifficulties(Ruff,Camenzuli&

Mueller,1996).

BrainInjuryAustraliahas,throughourregularcontactwithconstituents,identified

thattheneedsofthe“miserableminority”arepoorlyaddressed.Thisprojectaims

to:

o Developarigorousanalysisofthelivedexperienceofpeoplewitha

prolongedrecoveryfollowingconcussionandmTBI,

o Drawfromthisanalysisandparticipants’reflectionontheirindividual

experiences,whatarethe‘unmet’needsofpeoplelivingwithconcussionand

mTBI,and

o UsethisnewknowledgetoguideBrainInjuryAustralia’sILCactivities.

Priortothecommencementofdatacollection,ethicalapprovalforthisresearchwas

obtainedfromtheLaTrobeUniversityHumanEthicsCommittee(approvalnumber:

HEC17-086).

Projectparticipantsweredrawnfrom:acallinBrainInjuryAustralia’sregular

newslettertoourconstituents;ourtelephoneandemailconsultations;andthe

AFDOILCReadinessprojectsurveyconductedinJuly2017.Participantswho

registeredinterestwerecontactedbyBrainInjuryAustraliawithanInformation


Statementandcontactdetailsfortheleadresearcher.BrainInjuryAustraliaalso

offeredparticipantsa$50groceriesvoucherinrecognitionoftheircontribution.

Participantswereaskedtocompleteabriefbackgroundsurveyandparticipateina

singlesemi-structuredphoneinterview.Interviewswereconductedbyphone

betweenSeptember-November2017,andgenerallylastedbetween30and60

minutes.Interviewsexploredparticipants'experiencesofrecovery,including

servicesaccessedandfoundhelpful,aswellasgapsaroundinformation,treatment

andsupports.Thecostsofcare,lostproductivityandqualityoflifeimpactswerealso

explored,aswellasbarrierstotreatment,return-to-work,family/relationship

functioningandsocialparticipation.

Allinterviewsweredigitallyrecordedwiththepermissionofparticipants.Recordings

werepartiallytranscribedandlistenedtobythetworesearchersundertakingthe

project.Keyissuesraisedbyparticipantswerecodedtoprovidecommonthemes.


2.Whataretheoutcomesoftheproject?

BrainInjuryAustraliahasidentifiedpeoplelivingwithconcussionandmTBIasa

groupforwhomwell-plannedILC-typeactivitiescanmakeatransformative

difference.Comprisingalargeproportionofourconstituents,thesepeoplemaybe

invisibleastheyareeitherundiagnosed,sufferinsilence,orpartofa“hard-to-

reach”group(orallthree).AmajorbarriertoourILCactivitiesistherefore

understandingtheunmetneedsofthissignificant“miserableminority”andhow

besttoreachthem,andre-engagethemwithmainstreamhealthandotherservices.

18peoplewithlivedexperienceofconcussionandmTBItookpartinthisstudy.One

participantreportedtheirownlivedexperienceastheparentofayoungchildwith

mTBI(4yearsold).11participantswerefemale,and7weremale.Adultparticipants

rangedinagefrom21-61years.Whilemostparticipantswerefrommetropolitan

areas,sixwerefromruralandregionalareasandhighlightedtheparticularand

significantchallengesforthoselivingoutsidethemajorcities.Table2-1providesan

overviewofparticipantdemographicdetails.

Participantsdescribedthattheyhadsustainedtheirinjuriesthrougharangeofways,

includingfalls,carandbicycleaccidents,sportingaccidentsanditemsfallingontheir

heads.Fiveparticipantsreportedthattheyhadsustainedmorethanoneinjury.All

participantsreportedthattheywereexperiencingatleastoneongoingsymptom

relatedtotheirinjury.Commonly,thesesymptomsspannedseveraldomains,and

includedcognitive,behavioural,physicalandpsychosocialchanges.

Interviewdatareflectedthechallengesexperiencedbyparticipantsinaccessing

timely,specialistandevidence-basedinformationabouttheirinjuryandappropriate

support.Participants’experiencesreflectedacleardistinctionbetweenthosewho

hadbeenabletosuccessfullynavigatetherelevantservicesectors(medical,health,

disability)inordertoaccessthesupporttheyrequiredandthosewhohadnotbeen

abletodoso.Thisdistinctionwasalsoevidentinparticipants’descriptionofthe

long-termimpactsoftheinjuryinmanyareasoftheirlife.


Table2.1ParticipantDemographicDetails(n=18)

n

Gender Female 11

Male 7

Age >18 1

18-30 1

30-45 7

45-60 7

60+ 2

Injury Concussion 7

MildTBI 11

Location Metropolitan

Rural

12

6

Yearofmostrecentinjury 2017 5

2016 5

2015 1

2014 3

2010-2013 2

>2010 2

Extentofcurrentrecovery Fullyrecovered 1

Largelyrecovered 9

Halfwayrecovered 2

Somewhatrecovered 5

Notrecovered 1


3.Whatdidyoulearnfromtheprojectandhowdiditrelate

tothefiveILCoutcomeareas?

Thissectionofthereportisdividedintotwoparts.First,theoverarchingfindings

fromthisprojectaresummarised.Next,thefindingsareappliedtothefiveILC

outcomeareas,andincludeadiscussionoftheunmetneedsofthiscohort.

3.1Whatdidwelearn?

Thedatacapturedthroughtheinterviewprocesscoalescedaroundeightkeythemes

whichcapturedthelivedexperiencesoftheparticipantsinthisstudy.Thesethemes

representedparticipants’experiencesofearlytreatment,factorsthatsupportedand

hinderedtheirrecovery,throughtothelong-termconsequencesexperiencedby

individualsasaresultoftheirinjury.ThesethemesarepresentedinFigure3-1and

summarisedbelow.

Figure3-1.Keythemes


ThemeOne:Initialtreatmentanddiagnosis

Allparticipantssoughtmedicalassistancein

thedaysorweeksfollowinginjury.Some

(12/18)attendedanemergencydepartment

atalocalhospital,others(6/18)initially

presentedtotheirgeneralpractitioner.A

smallnumberofparticipants(2/18)were

satisfiedthattheirtreatingclinicianhad

identifiedanddiagnosedtheirinjuryand

providedthemwiththeappropriate

treatment,referralsandguidanceabout

managementoftheirinjury.Forthose

participantswhoattendedhospital,themost

commonexperiencewasthat,while

substantialattentionwaspaidtotheir

physicalinjuries,therewasinadequate

assessmentoftheirbraininjury.Thiswas

particularlythecasewhentherewerefew

signsofinjuryevidentontheirbrainscan.

Themajorityofparticipantswhohad

attendedhospital(10/12)feltthattheyhad

beendischargedtooquickly.Some(6/12)

reportedthattheywereexperiencing

confusionanddisorientationwhentheyleft

thehospital.Manydescribedthattheyhad

receivedlittleadviceaboutwhat,ifany,

followuptheyneeded(10/12).Justoverhalf

(7/12)reportedthattheywereunawarethat

theyhadsustainedabraininjuryuponleaving

hospital.Manyparticipants(8/12)described

“OntheFridaynight,myfriendswere

concernedandtheytookmetoemergency.

Theythoughtthatmypupilsweredifferent

sizesfromeachother,andtheytookmedown

toemergencybut[thestaff]rangsomeoneand

theysaid,‘Ohno,she’sallright.Sendher

home’.”

“Inhindsight,IwishI’dbeenin[hospital]

longer.No-oneevenspoketo[us]aboutthings

likepost-epilepsyandthingslikethat.We

literallyjusthadtoworkitoutforourselves

thatIhadabraininjurybecauseeverything

wasdifferent.”

“The[hospital]gavemeasheetofinformation

onconcussion.“Readthisanddon'tdriveuntil

yourecoveranditwouldprobablybeagood

ideatogoseeyourdoctor[inafewdays]just

tomakesurethatyou'reokay.”It’stakenme

morethansixmonthstorecover.”

“IwastoldIwasfinetogoandwouldbefine.

AlthoughIknewitwasn’tfine.Icouldn’t

rememberanything.”

“Ihadahorribleexperiencewithanemergency


thattheyfelttheywereontheirownafter

leavinghospitalandhadtotryand“workit

out”themselves.Giventheirsignificant

fatigueandcognitivechanges,thiswasoften

achallengingandfrustratingtask.

Threeparticipantsreportedthattheir

practitionerswerequicktoidentifyand

respondtotheirinjuriesandreferthemto

otherpractitionersand/orforfurthertesting.

Thelivedexperiencesofparticipants

highlightedthat,whereparticipantswere

abletobeconnectedtospecialistservices

early,theywereabletoaccesstreatmentand

supportthatassistedapositiverecovery.

roomdoctorwhosaid,“He’sfine.He’sjusta

babywhohashadasleeporhasgotavirusor

something.AndIneedtotellyouthatthisisan

emergencyroomforemergencycases.”

“Therewasnofollowup[fromtheacute

hospital].Iactuallydon’teventhinktheytold

metogototheGP,Ijustdecideditwasagood

ideatogototheGP.”

“Theyjustbasicallygo,‘No,nobrainbleed,

concussion.Timewillheal,’andthenyou’reout

oftheirsystemandpeoplearecompletely

lost.”


ThemeTwo:TheroleoftheGP

Therichdataprovidedbyparticipants

highlightedthecriticalroleplayedbytheir

generalpractitioners(GPs)overthecourseof

theirrecovery.TheirGPwastheinitialpoint

ofcontactafterinjuryforparticipants,while

otherssawtheirGPafterdischargefrom

hospital.Forall,theirinteractionswiththeir

GPsignificantlyshapedthecourseoftheir

journeyafterinjuryandtheirinteractionwith

otherbraininjuryandrehabilitationservices.

Many(12/18)reportedtheirGPwasacrucial

pointofaccessandreferral-theyidentified

andlinkedthemwithotherservicesthat

supportedtheirrecovery(suchasbraininjury

rehabilitationservices,neurological

physiotherapistsorpsychologists).

However,participants’experiences

highlightedthatGPshaddiverselevelsof

knowledgeaboutconcussionandbraininjury

whichwereevidentinthewaythatthey

engagedwiththeirclients.Several

participants(11/18)reportedthattheirGPs

appearedtohavelimitedknowledgeof

concussionorbraininjury.Thisresultedin

confusingandsometimesinconsistentadvice

aboutwhatactivities(suchasdriving,

working,sports)theyshould(orshouldnot)

engagein,andhowlongtheirrecoverywould

“IdidgototheGPtheverynextdayandtold

themexactlywhathadhappenedandtheyjust

toldmetocomebackinaweekifnothinghad

changed.You’vegonetotheplacewhereyou

thinkyoushouldbeabletogethelpandthat’s

whattheytellyou.Thatwasareoccurringthing

formeforquiteafewmonths.”

“TheGPdidn’ttellmewhattodoandwhatnot

todo.Ilookbackandthatwasreallybad,andhe

hadnoidea.”

“Doctors,they’reinatoughspot.Tryingtotreat

somethingwhentheydon’tknowwhatitis.”

“[MyGP]reallydidn'tknowenoughandIthink

hejustreferredmetosomeoneelsebecausehe

didn'tknowwhattodowiththesituation,tobe

honest…theyjustdon'tknowwhattodowith

[us].”

“MyGPwasgreatanditwasthecombinationof

himandmyphysio…thephysiosaidoncehe’d

seenmeandeverything,hewrotetotheGPand

said,‘Look,herhead’snotright,’andtheGP

started‘skillinghimselfup’,asheputittome.He

saidheknewnothingaboutitbuthefoundout.”


take.Generally,inthesecases,participants

describedthattheirGPshadalsoadvised

them“torest”,oftenwithlittleexplanationof

what“rest”meantinpracticeandhowlong

theirperiodofrestshouldcontinue.

“Wegotatime[toseetheGP]immediately…

shejustorderedanotherbarrageoftests.And

thenweworkedoutwithherwherewecouldgo.

Fortunately,shewasawareofthebraintrauma

rehabgroup[locally].Wegotinthere.”


ThemeThree:Specialistassessmentand

rehabilitation

Participants’experienceshighlightedthe

importanceofaccesstoprofessionalswith

specialistknowledgeandexpertisespecificto

mTBIandconcussion.Specialistpractitioners

wereabletoaccuratelyidentifyandmonitor

braininjury-relatedsymptomsanddesign

individualisedandevidence-basedtreatment

regimes.However,participants’experience

illustratedthatspecialistexpertisewasnot

alwayseasytoaccess.Barriersincludedthe

availabilityofspecialistservices(particularly

outsideofmajormetropolitanareas),

prioritisationcriteria(whichmeantthat

individualswith“mild”injurieswerealow

priorityforservices)andthesignificant

financialcostsassociatedwithsome

professionals,particularlyforindividualswho

mayhavestoppedworkingaftertheinjury.

“Iwenttothebraininjuryclinic.Iwassohappy

tobeunderstood.Theyhaveacoordinated

team.Iseethemallweekly.Theyworkasa

teamandproblemsolve.”

“ThecareandattentionandsupportthatIhad

throughthat[specialistbraininjury]team,the

monitoring,theexpertiseandthecompetency,

Icouldn’tfault.Ireallycouldn’tfault”.

“Ithink…howthesystemworksisyouneedto

tickacertainamountofboxesforthemtosee

youandIdidn’ttickenoughofthoseboxes.

They'reonlyinterestedinseeingthemore

[severe]cases.”

“[Money]wasoneofthebiggestthingswith

tryingtogettotherehabandthatinthecity…,

andeventheneurologistwaslike$300a

session.”

“Ihada[neuropsychological]assessmentdone

atsomepoint,anddidn’tdoparticularlywell.

[Mycounsellor]didsay,‘Itwouldbereally

goodtodoanotherone12monthsafterthe

injury,’butwewereverybrokeatthetimesoI

nevergotitdone.”


ThemeFour:Accesstoinformation

Two-thirdsofparticipantsreportedthatthey

struggledtoaccessinformationabouttheir

injuriesandstrategiestosupporttheir

recovery.Intheearlyphaseafterinjury,

accesstoinformationwashinderedbyinjury-

relatedsymptoms(fatigueanddifficulty

reading/lookingatscreensmeantthat

participantswereunabletosearcheffectively

forinformationthemselves)andmeantthat

theywerereliantonotherstoprovidethem

withtheinformationtheyrequired.This

occurredforsome,butnotforothers.Two

participantsnotedthattheywereprovided

withwritteninformationabouttheirinjuries

bythehospitalatdischargebutthis

informationwasnotpersonalisedandwas

notalwaysusefultoparticipants.Where

participantswereunabletoaccessthe

informationtheyrequired,theydescribed

thattheyhadworkedthroughthesituation

throughaprocessof“trialanderror”which

theyfeltwaslessthanideal.

“Iwouldliketobebetterinformedonwhat’s

goingoninmyheadandwhyandhowIcan

helpit.Whatisouttheretohelpsupportme?”

“Themainthingisjustgettinginformation,and

understandingwhatitwasthatwashappening

tome…gettinganoverall[picture]aboutthe

symptomsandwhat'sinvolvedandwhatto

expect.Gettingareallyclearviewonthatwould

havebeenreallyhelpfulbecauseIwasblind,I

don'treallyunderstandwhat'shappeningtome,

andno-onecanreallytellme.”

“[Itwouldhavebeenhelpfultoknow]what

supportscanbeputinplace.Thethingslike

reducingyourbills,thesupportthrough

Centrelink.IkindofthinkGPsshouldhavebeen

abletogivethatinformation.”

“It’sreallyhardtofindoneconvenientplaceto

findalltheinformation.”

“Iwould’velikedtohaveknown,“Okay,thisis

likelytheprojectionyourinjurywilltake,the

possibleconsequences.”

“Anykindofobjectivemeasuresof

improvementaregood…[and]justexplaining

whattherangeofnormalis,isgood.”


ThemeFive:Barrierstoapositiverecovery

Participantsdescribedarangeoffactorsthat

actedasbarrierstoapositiverecovery,

including:

• alackofknowledgeandawarenessof

concussion(bothfromhealthandmedical

professionals,andamongthegeneral

public),meaningthattheirneedswere

notreadilyidentifiedoraccommodated

for,

• beingadvisedthattheyshouldjust"wait

andsee"(ratherthanengageinactive

treatment)andfeelingthattheiroptimal

windowfortreatmenthadthereforebeen

missed,

• alternatively,notbeingadvisedto

graduallyreturntotheirprioractivities

andinsteadprematurelyreturningto(and

strugglingwith)activities,including

employment,

• beinginvolvedinlegalandinsurance

processes,inwhichtheirindividual

circumstancesandneedsfeltoverlooked,

and

• feelingexcludedandmisunderstoodby

others.

“Iwentback[towork]straightawayandthen

IrealisedthatIreallyshouldn'tbethere.

“TheGP,shewasgreat,butshewassaying,

“It’sjustaconcussion.You’llbefineinsix

weeks.”Andsixweekswent,andI’mstillnot

right.Twelveweeksgoby,“We’dbetterget

youtoaneuropsych[ologist]now,”andI’m

thinking,“Now?Nowyou’redoingthis?”So

myfirstneuropsychappointmentwas

somethinglikefourorfivemonthsafterthe

injury,anditwasonlythenwerealisedhow

seriousitwas.”

“Becauseit’scompensation,theylookatitasif

you’remalingering.”

“WhenItoldpeopleI'mnotwell,Ihaveahead

injuryorIhaveconcussion,theydidn'treally

understand.Theyjustsaid,"Oh,well,youlook

fine.What'swrongwithyou?Youdon'tlook

unwell."AndIsaid,"Well,youcan'tactually

seeaheadinjury.I'mnotokay.Imaylookokay

butI'mnotokay."

“It’snotahighlyregardedprobleminthewider

community,inthemedicalcommunity.Most

doctorswouldn’tbeabletorecogniseitand

eveniftheydidI’mnotsurethattheyareable

togiveadequatecare.”


ThemeSix:Emotionalconsequences

Participantsdescribedarangeofemotions

thattheyexperiencedoverthecourseoftheir

recovery.Anumberdescribedasenseof

beinggratefulthattheirinjurywasnotworse,

whileacknowledgingsignificantlossesthat

theyhadexperienced.Frequently,

participantsdescribedthattheirrecoverywas

lonely(reflectingasenseofthosearound

themnotunderstandingtheirinjury)and

frustrating(inhavingtoseekoutanswers

themselves,oftenwithlimitedsuccess).

“Youlosetouchwithnormalpeopleandtheir

lives.Soitcanbeverylonely.”

“IknowI'mnotaloneandIjustwish,Iwasn't

soisolatedifthatmakessense.”

“I’mjustsadandfrustrated.Thatgetsyou

downanddestroysyourmotivationtodo

anything.”

“Itwasanincrediblyfrustratingperiodof

time.”


ThemeSeven:Enablersofapositive

recovery

Whileparticipantsidentifiedthattherewere

arangeoffactorsthathinderedtheir

recovery,theyalsodescribedfactorswhich

hadsupportedapositiverecovery.These

included:

• Havingrealistictimeframesforrecovery,

whichallowedparticipantstothink

positivelyaboutthefutureand

acknowledgepositive,incremental

changesthatweretakingplace,

• Acceptingnewlimitationsandidentifying

strategiesthatworkforme,oftenwith

specialistinputtosupportandmonitor

suchstrategies,

• Experiencingrecognitionand

encouragementfromothersaboutthe

significantimpactoftheinjury,

• Connectingwithothers,particularly

otherswhohadbeenthroughasimilar

experience,inordertofeelless‘alone’,

sharestrategies,andmaintainasenseof

hope,and

• Feelingandbeinguseful–evenwhere

participantswerenotabletoreturnto

theirprevious,identifyingandengagingin

alternativemeaningfulactivitieswas

importantinmaintainingapositiveand

productivesenseofself.

“Hesaid,“12to18months,”andthatwas

difficultinformationtoabsorbbutitwasvery

helpfultohavespecificinformation…Itwas

helpfulbecauseitletmestarttoadaptmy

mindtothat…[toacknowledge]that

somethingreallyhadhappenedanditwas

goingtobealongerprocess.”

“AnotherclientandIchattedandenjoyedeach

other’scompany.It’sadifferentqualitysharing

yourstorywithanotherpatientascomparedto

atherapistorgeneralperson.Thefeelingsare

easiertounderstandandthere’salsoafeeling

ofmutualsupport,ofhavingsomethingtogive,

notonlytotake,needinghelp.”

“It’smademeappreciate[mypartner]alot

more.Hewashugelysupportive.”

“Allmyfriendsandmyfamilyweretherefor

me...IhadalotofsupportandIwasvery

lucky.”

“Ithelpedthateveryonewaspositiveaboutthe

prognosis.Therewaslightattheendofthe

tunnel,wejusthadtogothroughthetunnel.”


“[Theconcussionclinic]havedoneawholelot

ofproblem-solving,awholelotoflittlethings

thatthey'vedonetohelpmefindmyselfagain,

toaccept,andtogivemestrategiestolive

better.Iwasalwayscrashing,alwayshitting

thewall.It'saboutpacing.They’veexplainedto

meaboutpacing,pacing,pacing.”


ThemeEight:Long-termconsequences

Giventheprolongednatureoftheirrecovery,

allparticipantsreportedthattheirinjurywas

associatedwithlong-termconsequences.The

natureandseverityoftheseconsequences

variedaccordingtothepersonandthe

specialistsupportthattheyhadreceived.

Manydescribedtheirrelationshipshad

changedasresultoftheirinjury.Forsome,

thesupporttheyhadreceivedfromsomeone

closetothem(generallyspouse)duringtheir

recoveryhadstrengthenedtheirrelationship.

However,manydescribedthatthosearound

themhadprovidedsignificantcaretothemin

theirrecovery(andsometimescontinuedto

doso)andthatthishadbeenacauseof

concernforthem.Severalparticipants

(13/18)reportedthattheirbroadersocial

relationshipshadsufferedduetotheirinjury.

Forsome,thishadcontinuedforseveral

years.Inparticular,participantsdescribed

thatissuessuchasfatigue,reduced

concentration,andsound/lightsensitivity

madeitdifficulttoattendsocialfunctionsand

stayconnectedwithfriendsandextended

family.Many(15/18)reportedthattheir

fatiguehadcausedthemtowithdrawfrom

someormanyactivitiesthattheyhad

previouslyenjoyed.

“Ireallydidn’tmaintain[myactivitiesinthe

community]forthemostpart.Ididsomebits,

butitwouldbea10%contributionofwhatI’d

beenbefore.”

“Socially,Icanfeelmyselfholdingback.

SometimesI’vejustgottoobserve.There’s

enoughgoingon,Ican’tfindthecapacityto

participate.”

“It’sevenaffectedmysociallife.Idon’tgoout

atnightmuchbecauseIjustdon’thaveany

energy[once]Ifinishwork.”

“The[insurancecompany]disputetheimpact

it’shadonmylife.Ihavenoincomenow,

wasn’tplanningonthis.Iampayingformy

rehab.”

“[Therehabteam]werereallyconservative

withme.Workwerereallyunderstandingof

thesituation,sothatwasanotherpositive.

Theywereincrediblysupportiveofthatstaged

process...”

“Workheldmyjob–Iwantedtogobackto


Manyparticipants(15/18)describedthatthe

prolongednatureoftheirrecoveryfrom

injuryhadasignificantimpactfinancially,

relatedtoextendedperiodsawayfromwork,

costsassociatedwithtreatmentand

rehabilitation,andthelossoffuture

opportunities.Severalparticipants(11/15)

reportedthattheyhadexperienced

significantperiodsofunder/unemployment

sincetheirinjury,andanumberhadchanged

thenatureoftheiremployment.Uncertainty

aboutthelengthandcourseoftheirrecovery

wasseenasachallengeforthosewho

negotiatedwiththeiremployersduringtheir

recovery,althoughtherewereasmall

numberofparticipants(3/18)whoreported

thattheiremployersremainedflexibleand

responsivetotheirneedsinthepostinjury

period.

work.Afterayearofmonth-on-monthtimeoff

work,my[neurologist]saidtotakeanother

year.Ithought,“ThatmeansI’lllosemyjob.”

“Ireallywantedtoworkbut,obviously,the

amountIcoulddowasprettyhardtofindwork

for.Andtheemploymentagency,whenthey

foundoutmyrestrictions,said,‘Oh,you’retoo

disabled.Wecan’tfindyouwork.’Andthen

Centrelinkcamebackandsaid,‘You’renot

disabledenough.’TheyhavethiscriteriaandI

didn’tgetenoughpoints.”

“IdothinkthatIhaveapermanentdisability,

andno-onewilleverrecognisethat.My

employerrefusestorecogniseitasadisability.

IfIhadapermanentlymangledleg,they’dsay,

‘You’redisabled,’butthisisnotconsidereda

disability.”


3.2HowdothefindingsrelatetothefiveILCoutcomeareas?

ILCOutcome1:Peoplewithdisabilityareconnectedandhavetheinformationthey

needtomakedecisionsandchoices.

TheLivedExperience

TherecoveryprospectsforpeoplewhoaretoldtheyhavesustainedanmTBIor

concussionarenotreadilypredictable.Themajoritywillrecoverwithinthree

months.However,thatleavesanestimated2,000-3,000Australianseachyear

sustaininganinjurythatresultsinmoresevereandprolongedsymptoms.Thelived

experienceofourinterviewees,drawnfromthisprolongedsymptomgroup,reveals

ahealthsystemthatisorientedtothemajorityoutcome–aswiftanduneventful

recovery.Peoplewhoexperiencedifferentoutcomesmaybetreatedasoutliersor

misfits,andcliniciansmayseekalternativeexplanationsfortheirsymptoms,suchas

psychologicalproblems,ratherthantakingtheirheadinjurysymptomsseriously.

Unrecognised,disbelievedanddiscounted,andwithafreshlycompromisedcapacity

forinformation-seekingandself-advocacy,thesepeopleareindeedthe‘miserable

minority’.

Forallinterviewees,theirlivedexperienceduringtheirrecoveryperiod(whether

recognizedornot)wasoneoftemporarydisability.Regrettably,manyinterviewees

experiencedasub-optimalrecovery,meaningthattherewereperiodsoftimewhere

theydidnothavetheinformation,guidanceandsupporttheyneeded.Some

participantsarenowexperiencingpermanentdisability,inthattheyreport

symptomsthatarenotresolvingandinsomecasesareevenworsening.

Ourintervieweesreportacriticallackofinformationtohelpthemplanandmanage

theirrecoveryandalsototakearealisticapproachtotheirimmediateandmid-term

arrangementsregardinglivingarrangements,familyandworkresponsibilities,

financialandsocialsupports,andcommunityengagement.


UnmetNeedsRelevanttoILCOutcome1

Weknowfromtheacademicliteraturethattherateanddurationofpersistent

symptomsfollowing-mTBIcanbeeffectivelyreducedbyacombinationof

appropriateinformation,supportandself-management.Marshallandcolleagues

(2015)arguethattimelydiagnosisandmanagement“improvespatientoutcomes

andreducestheimpactofpersistentphysical,behavioural/emotionalandcognitive

symptoms”foradultswithmTBI(Marshalletal,2015,referencing:NSWMotor

AccidentAuthority,2008;Borgetal,2004;Savolaetal,2003;Ponsfordetal,2002).

Inarandomisedcontroltrial,Mittenbergandcolleagues(1996)foundthat

informationprovisionresultedina35%reductioninthedurationofsymptoms

followinganmTBI.

Ourintervieweesprovidedarichaccountoftheserviceandinformationgapsthey

encountered.TheunmetneedsofparticipantsrelevanttoILCOutcome1are

describedintheprevioussectionandincludeallofthefollowingthemes:

• ThemeOne–InitialTreatmentandDiagnosis

• ThemeTwo–TheRoleoftheGP

• ThemeThree–SpecialistAssessmentandRehabilitation

• ThemeFour–AccesstoInformation

• ThemeFive–BarrierstoaPositiveRecovery

• ThemeSix–EmotionalConsequences

• ThemeSeven–EnablersofaPositiveRecovery

• ThemeEight–Long-termConsequences

HowAddressingUnmetNeedsUnderILCOutcome1ImprovestheLivedExperience

Intervieweesfurtherdescribehowtheirlivedexperiencewouldhavebeenimproved

bybeingbetterconnectedtoadvice,guidance,treatment,supportsandtherelated

information.Theytellusthatbetterinformationandconnectiontoservicesand

supportswould:


o Helpthemtorecover:whattodotopromoterecovery(andwhatnottodo)

o Helptheirfamily/carerstounderstandwhattheyneedduringrecovery

o Tellthemwhattoexpectinarealisticrange–timeframes

o Providethemwithencouragementandrealistichope

o Providethemwithsupportandlegitimacyindealingwithemployment,

financialissues,expectationsofothersduringrecovery

o Givethemstrategiesformaximisingtheirwellbeingduringtherecovery

periodwithoutcompromisingrecovery

o Helpthemtodeterminetheirbestpathwaysbacktonormalactivityand

whentotakeeachstep

o Helpthemtofeelnotalone,notmalingering,not‘wrong’

o GivethemaGPwhounderstandsandsupportsthem,andprovidesthem

withguidanceandreferralwherenecessary,andcelebratestheirprogress

o Recognisewhentheirdisabilityincludesmorepermanentaspectsandhelps

themnavigatetolonger-termadjustments,supportsanddecisions.


ILCOutcome2:Peoplewithdisabilityhavetheskillsandconfidencetoparticipate

andcontributetothecommunityandprotecttheirrights

TheLivedExperience

Themajorityofintervieweesreportedlimitationsintermsoftheircommunity

participationandprotectionoftheirrights.Theselimitationsmostlystemmedfrom

theunmetinformationneedsdescribedunderOutcome1.

Allbuttwoofthoseinterviewedreportedchangingtheiremploymentasaresultof

theirinjury.Formany,thiswasbecausetheirinjurycausedaprolongedabsence

fromwork.Foremployees,poorunderstandingofthenatureandimpactoftheir

injuryandlikelyrecoverytimeframesmeantthattheyhandleddecisionsaround

returningtoworkbadly.Foremployers,inconsistentmessagesfromtheiremployee,

coupledwithvagueandrepeatedshort-termmedicalcertificates,ledthemtobe

relativelyimpatientandunsupportive.Inanumberofcases,intervieweesreported

secondaryworkproblems,suchasbullyingthataccompaniedtheirattemptsto

returntowork.Twoofthesecasesresultedinaseparateemployeeclaimfor

Workcoverrelatedtobullying-inducedstress.

Anumberofintervieweessustainedtheirbraininjuryintheirworkplace,including

theirjourneytoorfromwork.Thesepeoplereportedadditionalproblemsindealing

withtheirinsurer.Forexample,intervieweesreportedtheirinsurerwouldinterfere

with,andinsomecases,reducetheiraccesstodiagnosisandtreatmentby

mandatingwhichphysiciansandalliedhealthprofessionalstheyshouldsee.A

smallernumberofthisgroupalsoreportedtheirsymptomsbeingdismissedand

minimisedbyinsurer-compensatedclinicians.

WithoutaconsistentmessagefromtheirGP,bothtotheemployeeandintheform

ofmedicalcertificatesprovidedtotheemployer,ourintervieweeswereleftto

provideexplanationsfortheircontinuedabsence.Similarly,whentheytriedto

returntoworktooearly,ourintervieweesreporteddifficulties,suchasmaking

mistakesandhavingtoleaveearlybecauseoffatigue.Itisimportanttonotethatthe


experienceofbraininjury-relatedsymptomsmayerodeaperson’scapacitytoplan

andcommunicate.Themajorityofourintervieweesreportedexperienceswhere

theirrightshavenotbeenfullyprotected.

Ourintervieweesallexpressedadesiretobeengagedinmeaningfulwork.Forsome,

areturntoworkhasbeenachieved.Othershavemadeanumberofattemptsto

returntoworkbuthavebeenunabletomaintainemployment.Othershavefound

alternativewaystocontributewhichhavebeenimportantsubstitutesforthe

meaningpreviouslyattachedtotheirwork.Insomecases,thesealternativeactivities

havehelpedformabridgethroughtherecoveryperiodtopost-recovery

employment.

Someofourintervieweesreliedheavilyontheirworkfortheirdaytodayfinancial

support.Forthesepeople,returntoworkhasbeenparticularlyfraught.Lackof

financialsupporthasaffectedtheirabilitytoaccesstreatmentandtodevelopthe

circumstancesneededfortheirrecovery.Thedifficultiesexperiencedinnegotiating

theirinjuryandrecoverywiththeiremployerandworkplaceinsurerhasextendedto

theirdealingswithothersourcesoffinancialsupport,suchasCentrelinkandState

Trustees.


TheunmetneedsofparticipantsrelevanttoILCOutcome2aredescribedinthe

previoussectionaccordingtothefollowingthemes:

• ThemeTwo-TheRoleoftheGP







Intervieweesdescribedhowtheirrightsandcapacitytoparticipateinthe

community,includingwork,couldhavebeenimproved.Theyexpressedthat

improvedinformationandpolicieswould:

o Provideclearguidancetotheiremployer/workplaceinsureraboutthenature

andimpactofprolongedrecoveryperiodsfollowingconcussionormTBI

o Helpthemandtheiremployer/workplaceinsurertounderstandtheirneeds

foroptimalrecoveryandtakeseriouslytheirdesiretoreturntowork

o Helpthemandtheiremployer/workplaceinsurerdesignanappropriate

returntoworkplan

o Helpthemdevelopalternativeactivitiestoaidtheirrecoveryandprovide

themwiththebenefitsofcommunityparticipation

o Provideapolicyframeworksuitedtotemporarydisability(3-24months)

regardingmaintenanceofemployment,returntoworkandfinancialsupport

o Provideguidanceandlegalsupportforcasesofunfairtreatment.


ILCOutcome3:Peoplewithdisabilityuseandbenefitfromthesamemainstream

servicesaseveryoneelse.

TheLivedExperience

Themajorityofintervieweesreportedlimitationsintermsoftheiraccessto

mainstreamservices.Again,theselimitationsmostlystemmedfromtheunmet

informationneedsdescribedunderOutcome1.

Themostsignificantdriverofapositiverecoveryexperiencewasaninterviewee’s

accesstoaknowledgeableandsupportiveGP.Inthesecases,theGPwaseitherthe

first,oroneofthefirst,toidentifythepossibilityofanextendedperiodofrecovery

fromtheperson’sinjury.Theyinformedthepersonaboutthisclearly,andfollowed

throughwithmonitoring,andasrequired,referraltospecialisttreatmentand

support,typicallyabraininjuryclinic.TheGPcontinuedtomonitorandencourage

theirpatientthroughtherecoveryperiod.

Anotherdriverofpositiverecoverywasinterviewees’accesstoaspecialistbrain

injuryclinic.Theseclinicsprovideintegratedservices,typicallyincludingneurologist

and/orrehabilitationspecialist,neuropsychologist,clinicalpsychologist,

physiotherapist,occupationaltherapistandspeechpathologist.

Significantly,fewintervieweesreportedadequatemanagementoftheirbraininjury

intheemergencysetting–ambulanceandemergencydepartment.Somereported

thatanunderestimationoftheirinjuryatthisstage‘stayedwiththem’and

continuedtothwarttheireffortstoobtainsupportandtreatment.

LackofGPknowledgeandsupportwasalsoreportedasasignificantbarriertoa

positiverecovery.PeoplereliedontheirGPforreferrals,integratedcareand

support,andformandatorycommunications(suchasmedicalcertificates).Reasons

intervieweesgaveforlackofGPsupportincludedlackofknowledge,anchoringof

thehospitalassessment,attributionofsymptomstopsychologicaldifficultiesand

conflictofinterestwherereimbursedbyaninsurer.


Otherbarrierstoapositiverecoveryrelatedtotheavailabilityandaccessibilityof

suitableservices.Braininjuryclinicsareonlylocatedinmajorcitiesand,whilethere

havebeenafewadditionsinrecentyears,thereareonlyabout15acrossAustralia.

Theseclinicsdealwithinjuriesofallseveritiesandarehardtoaccessformilder

cases,althoughthesuccessrateforthekindsoftreatmentandsupportprovidedin

thesecasesishigh.Thoseintervieweeslivinginruralandregionalareasreported

considerabledifficultyinaccessingspecialistservices.Symptomsofconcussionor

mTBImaymeanthatsomeonecannotdriveand/orexperiencesignificantfatigueon

longjourneys.Additionally,someintervieweesreporteddifficultyinbeingableto

meetthecostsofspecialistservices,includingthetravelandassistancerequiredto

attend.Thiswasparticularlythecaseforthoselivinginruralandregionalareasand

thosewithfewerfinancialresourcesorongoingsupport.




• ThemeTwo-TheRoleoftheGP







Intervieweestellusthatimprovedaccesstomainstreamservices,inadditiontothe

informationandknowledge-drivenserviceimprovementslistedunderOutcome1

would:

o Significantlyreducetheworry,frustrationandmiseryattachedtotheirinjury

o Savetime,expenseandresourcesattachedtounnecessarytests(e.g.scans)

o Providethemwithtargetedtreatmentandsupportssuitedtotheirspecific

challenges

o Empowerthemto‘makethemost’ofmysituationandadaptwhere

necessary.


ILCOutcome4:Peoplewithdisabilityparticipateinandbenefitfromthesame

communityactivitiesaseveryoneelse.

TheLivedExperience

ManyoftheunmetneedsunderILCOutcome4areaddressedunderOutcome1

throughimprovedconnectionandinformationopportunities.However,anumberof

intervieweessuggestedtheywouldvalueandbenefitfromsomekindofpeer

supportgroupornetwork.

Allintervieweesreportedlimitationsintermsoftheirparticipationincommunity

activitiesduringtheirrecoveryperiod.Wherethisrecoveryperiodwaslessthan12

months,theserestrictionshavebeenanacceptedcomponentof‘gettingbetter’.

However,eveninthesecases,betterinformationandsupportduringtherecovery

period(seeOutcome1)couldassistpeopleinfindingstrategiesforcontinued

participationandengagementwiththeirfamiliesandwidernetworks.

Thoseintervieweeswhofoundwaystomaintaintheircommunityactivities,orto

introducenewones,reportedthisasasignificantenableroftheirpositiverecovery.

Reportedbenefitsincludedlessisolation,greatersenseofself-worth,maintenance

offamilyandsocialnetworks,andgradualtestingandchallengingofpersistent

symptoms.

Someintervieweesexperiencedmoreextensiveandprolongedrestrictionstotheir

participationincommunityactivities.Thesymptomsexperiencedfollowing

concussionormTBIvary.Forsomepeople,forexample,difficultiesindealingwith

noisyenvironmentsandproblemswithbalancemakeithardtoapproachmany

groupandsocialenvironments.Theintervieweeswhodescribeddifficultiesas

extensiveasthesealsodescribedprolongedrecoveryperiods,intheorderofyears

ratherthanmonths.Justasdelineatingthosewhoexperienceanextendedperiodof

symptomsfollowingaconcussionormTBIfromthemajoritywhomakeaswiftand

uneventfulrecoveryisimportant;itisalsoimportanttoidentifythosewhoseinjury

hasresultedinsomeformofmorepermanentdisability.


Aswellasreceivingadvancedguidanceonstrategiesforengagingwithcommunity

activities,identificationofamorepermanentdisabilityenablessomeonetomake

morelongtermadjustmentstotheirsocialarrangementsandprovidesthemwith

additionalformsofsupport,suchasanNDISpackage,toassisttheircommunity

participation.








Intervieweestellusthatbeingabletoparticipateincommunityactivitieswill:

o Providethemwithincentiveandpracticetosupporttheirrecovery

o Increasetheirsenseofbelonging

o Benefittheirfamilyandnetworks

o Supporttheirmentalhealth

o Helpthemtoconnect,forexample,tofindfutureworkorvolunteering.


ILCOutcome5:Peoplewithdisabilityactivelycontributetoleading,shapingand

influencingtheircommunity.

TheLivedExperience

Formanyinterviewees,thelimitationsexperiencedincommunityparticipation

describedunderOutcome4translatetobarrierstotheiractiveinvolvementin

leading,shapingandinfluencingtheircommunity.Manyintervieweesreportedtheir

changedcapacitytoassistwithcommunity-relatedeffortsasnotonlycreatinga

senseoflossforthem,butalsocreatingriftsanddiscomfortas,similartoemployers,

communitygroupsfailedtoappreciatetheimpactoftheirinjury.

Thisnegativeexperiencebornoutofmisunderstanding,servedtoisolatesome

intervieweesfromthoseparticulargroups.Forsome,thenegativeexperience

causedthemtowithdrawfromcommunityactivitiesmoregenerally.However,some

intervieweesactuallydevelopednewactivitiesandformsofcommunityengagement

–joiningandcreatingnewcommunitieswithinwhichtheycouldplayasignificant

role.

Morespecifically,someintervieweescametorealisethattheywerenowapartof

thebraininjurycommunity.Asmostpeopleweretold,initially,thattheyeitherdid

nothaveabraininjuryorwouldrecoverwithinafewweeks,ittooksometimefor

eachpersontorecognisethattheywereindeedexperiencingbraininjury.Following

that,manyhavesoughtconnectionthroughBrainInjuryAustraliaandsomedescribe

seekingotherswithsimilarexperiencesonInstagramandothersocialmedia.This

highlightstheneedforincreasedopportunitiesforpeoplewithlivedexperienceto

beabletoprovidethisfeedback.Severalparticipantsreportedthattheywere

passionateandmotivatedtohelpinformthesupportandinformationprovidedto

peoplewithconcussionandmTBI.

Allintervieweesreportedvaluingtheopportunitytocontributethroughthese

interviewstothefutureactivitiesofBrainInjuryAustraliaforthebenefitofpeople

whosustainsimilarinjuriestotheirowninthefuture.









Intervieweestellusthatbeingabletoactivelycontributetoleading,shapingand

influencingtheircommunitywill:

o Helpthemtofeelusefulandhaveasenseofpurposeintheircommunity

o Providethemwithnetworksandasenseofbeingvaluedbytheircommunity

o Helpthemtoretain/regaintheirsenseofidentityasaleader,shaperand

influencer.

Andspecifictotheirnewbraininjurycommunity:

o Helpthemtoensureotherswhoexperienceasimilarinjuryhaveamore

positiverecoveryexperience

o Helpthemcontributetobetterinformation,servicesandsupportsforpeople

withconcussionandmTBI.


4.Howhastheorganisation-specificprojectcontributedto

yourorganisationbecomingILCready?

WithinthelargerAFDO-ledproject,ourorganisation-specificprojecthascontributed

substantiallytoBrainInjuryAustralia’s‘readiness’forILC.

Wehavereinvigoratedourdialoguewithourconstituentsandmadetheir

voiceslouder

BrainInjuryAustraliausedthesurveycomponentoftheAFDOILCReadinessproject

toexploreourconstituents’perceptionsoftheirunmetneedsandtoinvite

constituentstoself-nominateasinterviewparticipantsforthisindividualproject.

Thesubstantialresponsetoourcall(around40peoplewithlivedexperienceof

concussionandmTBIvolunteeredtoparticipate)demonstratedthevalueofthiskind

ofengagementwithourconstituentsandconfirmedtheirenthusiasmtohelp

improveexperiencesfortheircommunity.

ByfeedingbacktheresultsofthisprojecttoparticipantsandtothebroaderBrain

InjuryAustraliacommunity,weareshowingourconstituentsthattheirvoicesmatter

andcaninfluencefuturedirections.

Wehavedemonstratedhowwecanexploreunmetneedtoinformand

provideanevidencebaseforourILCactivities

Thegeneralcall,followedbyasemi-structuredinterviewapproachhasbeenfruitful

inprovidingBrainInjuryAustraliawithrichandauthenticaccountsofconstituents’

livedexperienceoftheirinjury.Throughthisapproachwehavebeenabletoexplore

allILC-relevantaspectsofpeople’slivedexperience.Byincludingarangeof

interviewparticipants,wehavebeenabletobuildareasonablycomprehensiveand

objectivepictureofenablersandbarrierstoapositiverecoveryexperience.Wehave

alsobeenabletodetermineindicativeproportionsofintervieweesexperiencing,for

example,apositiverecoveryexperienceorasupportivereturntowork,versusa

delayedandfraughtrecoveryexperienceandapparentriskofpermanentdisability.


Theapproachtakeninthisorganisation-specificprojectcouldbereplicatedtoinform

otherareasofconstituentneed.

Wehavedevelopedamorerigorousanddefinitiveaccountoflived

experienceofconcussionandmTBIinAustralia

BrainInjuryAustraliahasbeenaware,throughourwork,oftheinformationand

servicegapsexperiencedbythe‘miserableminority’–thosewhodonotmakea

swiftanduneventfulrecoveryfromconcussionandmTBI,andmayindeedtake

monthsoryearstorecover.Forsome,itappearsthatpossiblyduetodelaysin

appropriateguidance,treatmentandsupport,theirdisabilitybecomesofa

permanentnature.Forsome,thetendencytominimise‘so-called’mildinjuries

withintheinsurancecontexteffectivelydeniesthemtheirrightfulentitlements.

ThefindingsofthisprojectwillinformourILC-relatedactivitiestoimproveoutcomes

forthe‘miserableminority’andtodesignsuitablemeasuresofprogress.


5.Whatwillyoudowiththeinformationgainedfromthe

activitiesundertakenbyyourorganisation-specificproject?

TherichandgenerousaccountsofBrainInjuryAustralia’sconstituentsprovidea

clearerpictureofwhatitmeanstobeinthe“miserableminority”.Whilearound

half(10/18)ofthoseinterviewedreportedbeingnowlargelyorfullyrecovered,the

restcontinuetoexperiencesignificantdifficulties.Forsomepeoplelivingwiththe

consequencesofone,ormultiple,“mild”injuries,therearearangeoffactorsthat,

whencombined,negativelyinfluencetheirabilitytoaccesstheinformationand

servicesthatmaysupportanoptimalrecovery.Basedontheinterviewswe

conductedandfeedbackprovidedtoBrainInjuryAustralia,itisevidentthatthese

factorsmayincludelowlevelsofcommunityrecognitionofadisabilitythatcannot

beseen,ineligibilityand/ordeprioritisationofindividualswithmildinjuriesfor

specialistbraininjuryrehabilitationservices,ongoingquestionsaboutthe

relationshipbetweenstandardmeasuresofinjuryseverityandresultingdisabilityfor

individualsinthisgroup,adearthofevidence-basedinterventionsforindividuals

withconcussionandmTBI,andatendencytodiscountthelivedexperienceofthose

with“mild’injuryinthecontextofinsuranceorcompensationclaims.

BrainInjuryAustraliaproposesanumberofactionsbasedonthefindingsofthe

broaderAFDOILCReadinessprojectandthisorganisation-specificprojectwithinit.

Someoftheseactivitiesarealreadyunderwayorcommitted,whileothersareunder

consideration.Theyarelistedbelow.

Actionsunderway

i. FeedbackoftheprojectfindingstoparticipantsandalsotothebroaderBrain

InjuryAustraliacommunitythroughournewsletter

ii. ContinuedeffortbyBrainInjuryAustralia,workingwithNSWHealth,onthe

establishmentofspecialistconcussionclinicsthroughoutthestate

iii. Application(submitted29thSeptember2017)foranILCReadinessGrantfor

theproject“Empoweringpeoplewithabraininjury-accessibleresourcestoguide


recoveryandmaximiseparticipation”.ProjectpartnersincludetheUniversityof

Melbourne,theRoyalAustralianCollegeofGeneralPractitionersandCodeand

Visual.Theprojectwillproducenewinformationresourcestohelppeoplewitha

braininjurygainconfidenceinthemselvesandthesupportoftheirGPsastheywork

togethertomaximisetheirprospectsforsocialandcommunityparticipation

iv. BrainInjuryAustralia’sfacilitationofanational“communityofpractice”in

braininjuryfortheNationalDisabilityInsuranceAgency(currentlybeingpilotedin

Sydney).Itsprimarypurposesaretooptimizebothneedsascertainmentandplan

fidelityforNationalDisabilityInsuranceScheme(NDIS)participantswithanacquired

braininjury,includingthosewith“mild”injury

v. BrainInjuryAustralia’scurrentleadershipoftheAcquiredBrainInjuryand

FamilyViolenceProject,aconsortiumincludingMonashUniversity,Domestic

ViolenceVictoria,NoToViolenceincorporatingtheMen’sReferralServiceandthe

CentreforExcellenceinChildandFamilyWelfare.FundedbytheVictorian

DepartmentofHealthandHumanServices,theprojectrespondsto

recommendation171oftheVictorianRoyalCommissionintoFamilyViolence:“The

VictorianGovernmentfundresearchintotheprevalenceofacquiredbraininjury

amongfamilyviolencevictimsandperpetrators.”Victim-survivorsoffamilyviolence

areanexampleofa“hardtoreach”group,someofwhomwillexperiencethekinds

oflongertermconsequencesofmultipleconcussionsormTBIsasdescribedinthis

report.

Actionsunderconsideration

vi. Developmentofresourcestohelppeoplewithabraininjurythatisresulting

intemporarydisabilitytonavigatetheirrelationshipwiththeiremployer,insurer

(whereapplicable)andtoobtainthefinancialsupport,leaveandreturntowork

arrangementstowhichtheyareentitled.Aparticularfeaturetobeincorporated

addressestheuncertaintimeframesattachedtorecoveryfromconcussionandmTBI

vii. Exploratorydevelopmentofoptionsforpeersupportamongpeople

experiencingextendeddurationsymptomsfollowingabraininjury


viii. AfurthersurveyofBrainInjuryAustralia’sconstituentstoexploretheir

perceptionsofunmetneedsandotheraspectsoftheirlivedexperience(notbefore

July2018).

understanding the needs of the “miserable minority”...knox, l., goldsmith, s. & rushworth,...

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