I HATE YOU I WISH YOU WERE DEAD!Livingwithlongtermchronicconditions

Supportingwhānautosupporttheirteenager

Inourkōrerotoday….• Wewillbebrutallyhonestandupfront

• Wetalkaboutspecificpeopleindifferentrolesthathavehelpedorhinderedourjourney

• Ifyourecogniseyourselfinthisstory,pleasedon’tgetoffended

• Ourwhanaustory,ourwhanauexperience,ourwhanaujourney

• Useourstorytotakeanhonestlookintoyourownapproach:• Canyoudothingsbetter?• Whatlearningscanyoutakefromthis?• Howcanyouapplythemtoyourownwork?

Asababy

••Severalboutsofbronchiolitis

Asapreschooler

••Diagnosedwithasthma

••Managedwithflixotide

••1-2hospitaladmissions

Atprimaryschool

••Diagnosedwithhayfever

••Multiplehospitaladmissions(10-20)peryear

••Diagnosedwithbrittleasthma

••Seriousboutofpneumonia

••Diagnosedwithbronchiectasis

••Multiplemedications

••2lifethreateningattacks

••CAMHSreferralforanxiety

Atintermediateschool

••Increasinghospitaladmissions(4-6permonth)

••Massiveasthmaattack(2collapsedlungs,2respiratoryarrests)

••Hypoxicbraininjury••PICU/Starship/WilsonCentre••Rehabilitation••OngoingchestinfectionsrequiringIVantibiotics

••Ongoingfatigue••PTSD••Multiplemedications••Longtermsteroiduse••Frequentabsencesfromschool••IntermittentCAMHSinput

Athighschool

••Ongoingfatigue••Chronicpain••Allergieshaveworsened••Ongoingchestinfections••Portacathinserted••Asthmaflareupscontinue••Lowerbackpain(queryslippeddisc,associatedtolongtermsteroids)

••MinimalCAMHSinput

It’saboutthewholepersonandtheirwholeworld

Family

Myhealth

Friends

Sports

School

Onagoodday

Family

Myhealth

Friends

Sports

School

Onabadday

Whenthebaddaysturnintoweeksandmonths….

• Disobedient• Refusaltotakemedications• Hidinghersymptoms• Delayingmedicalhelp• Disengaged• Defiant• Lying• Runningaway• Breakingfurniture• Physicallyabusive• Violentoutbursts• Thoughtsofself-harming

ASENSEOFHOPELESSNESS

You can only be so strong for so long

Until you reach the point

Where you break.

Physically.

Mentally.

Emotionally.

Broken.

Emotionalandmentalwellbeingofthewhānau

Atintermediateschool

••Increasinghospitaladmissions(4-6permonth)

••Massiveasthmaattack(2collapsedlungs,2respiratoryarrests)

••Hypoxicbraininjury••PICU/Starship/WilsonCentre••Rehabilitation••OngoingchestinfectionsrequiringIVantibiotics

••Ongoingfatigue••PTSD••Multiplemedications••Longtermsteroiduse••Frequentabsencesfromschool••IntermittentCAMHSinput

Athighschool

••Ongoingfatigue••Chronicpain••Allergieshaveworsened••Ongoingchestinfections••Portacathinserted••Asthmaflareupscontinue••Lowerbackpain(queryslippeddisc,associatedtolongtermsteroids)

••MinimalCAMHSinput

Emotionalwellbeingofusasparents

Emotionalwellbeingofourchildren

Iftheparentsarestrongthewhanau

isstrong

Ifthewhanauisstrong,thechildrenare

strong

AskingforHelp

• PaediatricSocialWorker• ReferraltoChildren’sTeam• ReferraltoCAMHS– Discussiononwhathadandhadn’tworkedinthepast

• ReferraltoFamilyWorks• ReferraltoStandChildren’sServices

5th timelucky!

• ThepsychologistsupportedJamesandIasparentsandasindividuals

• Shewasamindreader!• Shegaveus‘littletweaks’tohelprefineourstrategiesandtactics

• Shewasaccessibleanytime– wefeltsupported• Shecaredaboutus

• Anamazingsocialworker• Initforthelonghaul• Adaptableandflexible• Inourownway,inourowntime• Caring,supportive,lovingworkforce• Weneverfeltlikea‘tickbox’whanau

In my own wordsBy Tomairangi Pihema-Brown

Ihatebeinginhospital.WhenI’minisolation,theyjustgivemethepills

andthenforgetaboutme.

Inhospitalthere’snothingtofeelhappyabout.IjustlookforwardtoShortland St.Icountdownthehours

Iwantthedoctorstonotjustfixmeupwithpills.Theydischargemetooearly.Ihatewhentheysay“ohyoujustcalledinforavisit”or“You

missedus!”Ihatethat,it’sannoying

Idon’tspendenoughtimewithmymumanddadandifIdoit’sbecause

I’minhospital

Idon’tlikehoweveryonesays

“Youalwaysstartfights”Idon’tlikewhenmy

sistersays“It’sbetterwhenyou’re

inhospital.”ItmakesmefeelangryandIjustwanttopunch

her.

IfeelangryandshamedoutbecauseIhavetohavemumordadwithmefor

schooltripsandsports

AllIwantistoeat,sleepandgoto

school.Notmedicines,notappointments.

Ican’tevenenjoynighttime.Idon’tevengettosleep.Asthmaisalwaysthere

Idon’tknowwhatIwanttochangeathome.Idon’twantanythingto

changeathome.Ijustdon’twanttobeinhospital

Iwasawaketill4am.ThenIwenttosleep.Mysleepingisallmixedup.Isleepatdaytimeandstayawakeat

night

IhateDadbecauseitsallhisfault.ButIdon’tknowwhyit’sallhisfault.

TheonlytimeIgettomyselfiswhenIrunaway

RespectOurRights

OurrightsasparentsvsOurrightstoparent

Ourrightstobeafamily

Ourrightstodecidehowtheprofessionalscanbesthelpus

Ourrightstocareforourdaughter

Whatwouldhelp?

Everychildwithalongtermchronicconditionrequiringsignificanthospitalisations,

medicationregimesorabsencesfromschoolshouldreceiveculturallyappropriate

psychologicalandsocialsupportfrom10yearsofage

Asababy

••Severalboutsofbronchiolitis

Asapreschooler

••Diagnosedwithasthma

••Managedwithflixotide

••1-2hospitaladmissions

Atprimaryschool

••Diagnosedwithhayfever

••Multiplehospitaladmissions(10-20)peryear

••Diagnosedwithbrittleasthma

••Seriousboutofpneumonia

••Diagnosedwithbronchiectasis

••Multiplemedications

••2lifethreateningattacks

••CAMHSreferralforanxiety

• Copingstrategies• Angerandfrustration• Selfesteem andfittingin• Lookingafterthemselves

• Feelingincluded

Parents,grandparents,caregivers

CAMHSsupportearly:CopingstrategiesUnderstandwhat’sgoingonintheirchild’smindStrategiestokeepthemselveswellSupportingtheirotherchildrenWork-lifebalanceandstressmanagementKeepingthewhanausafe

Thesiblings

CAMHSsupport:• Copingstrategies– theyfeelworriedandstressedaswell.• Feelingincludedandvalued

Supportgroups:• Wheretheycanhavefun,enjoythemselvesandnotworrytoomuch!

PRE-EMPTTHECHAOSBEPROACTIVE

SUPPORTTHEWHANAUWORKHOLISTICALLY

Wherearewenow?

• Inamuchbetterspace!• Wefeellikea‘normal’family• Wearebackincharge• Wecanmakedecisions• Wefeellikeweareincontrol• Wecantalk,laugh,growl,punish• Wespeakupandspeakout• WECANCOPE