the cambridge centre for paediatric neuropsychological
TRANSCRIPT
TheCambridgeCentreforPaediatricNeuropsychologicalRehabilita:on(CCPNR)
Aspecialistserviceforchildrenandfamiliesaffectedbyacquiredbraininjury
DrAylaHumphrey&DrSuzannaWatsonUniversityofCambridgeandCPFT
UNIVERSITY OF CAMBRIDGE
CambridgeCentreForPaediatricNeuropsychologicalRehabilita:on(CCPNR)
Whoweare:
Ø Specialistinter-disciplinaryteamØ Providespecialistassessmentandneuropsychologicalrehabilita:onforchildrenwithanacquired,non-
progressivebraininjuryØ Wesupportchildrenandtheirfamilytomakesenseoftheinjury,learnhelpfulwaystocopeandrealisetheir
fullpoten:al
Whowesee:Ø Uptotheageof16,or19ifs:llinvolvedinfurthereduca:onØ Withcomplexinterac:ngcogni:ve,emo:onalandcommunica:ondifficul:esØ Whereworkingwithschoolandfamilysystems,acrossageandabilityrangesisrequiredØ ReferralsfromanyprofessionalWhatweoffer:Ø Specialistassessmentandinterven:ontoyoungpeople,families,health,socialcareandeduca:onservicesØ Deliveredbyamul:disciplinaryteamØ Directinterven:onwithchild,familyandtheirsystemØ Indirectinterven:ontrainingothersØ Workalongsideotherservices
CCPNR’sstoryfromconcep:ontodate:aworkinprogress
• DevelopmentofCCPNR- WhatserviceswerethereforchildrenwithABIandhowdidwegetwhatwasneeded?• Whatdoestheservicelooklikenow?- Whoareweandwhatdowedo?• Interdisciplinaryassessmentandinterven:on- Ini:alAssessment,DetailedAssessment,ShortRehabpackagesandFullprogrammes• Whatnext?
Epidemiology
• 1.4millionpeople/yearaYendAandEwithtrauma:cbraininjury
• Approximately50%areyoungpeopleundertheageof15.
• 5-6%ofchildrenadmiYedwithclosedheadinjuryeveryyear.
(NICE, Head Injury. 2014; Appleton and Baldwin, 2006)
WhatWas/Ismissing
• LocalgenericservicesascurrentlyconfiguredintheUKwill,andindeedshould,struggletomeetthesechildren’sneeds.Iftheyarenotstruggling,theyareprobablynotrecognisingthem.
TermsofreferencefortheRehabilita:onWorkingPartyoftheStandingCommiYeeonDisabilityofRoyalCollegeofPaediatricsandChildHealth,2003
Quickthoughtabouttrajectoryofdevelopmentforyoungpeoplewithbraininjuries:thelongerwedelayinterven:onthebiggerthegap.
WhatisNeeded• Tofundaclinicianandadministratortoactasco-ordinatorsforanini:altermof3years.
• Todecideontheircatchmentpopula9on’sneed(numericallyandintensity)forrehabilita9oninco-ordina:onwithsurroundingareasandtheNa:onalSteeringGroup.
• Toaccessthelocalstrengths,whichcouldcontributetoarehabilita:onservice.
• Tosetupapopula:onbasedclinicalteam,whosebriefistoprovidearehabilita9onservicebetweentheter9aryhospital,andsecondarylevelandcommunityservices.
• ToworkwithNHSandcharitablerehabilita9onunitswherepossibletodevelopservices.
• Toworkwiththena9onalsteeringgroup(seesec:on)onthedevelopmentoflocallybasedpaediatricrehabilita9onservices(seesec:on).
• Todevelopabusinessplanforthepopula9onbasedservice,whichwillbeinaformwhichcanbeauditedannually(seesec:ononaudit).Thisplanmayincludeaninpa:entunit.
• Todevelopresearch,bothlocallyandcontributetona9onalresearchpriori:es.
• Toassesstrainingneeds.
• Todevelopjointworkingprac9ceswithsocialservicesandeduca:onservices
2007Provision
• Na:onally: in-pa:entprovisionforchildren withacquiredbraininjury
• Locally: Nospecialistprovisionfor childrenandteenswith acquiredbraininjury
L
Acute
Community
• TBIinRTCaged9• EmergencyNeurosurgery• TransferredtoPICU• ReturntoDGHforacuterehab• ReferredtocommunitypaediatricianandCAMHS• ReferredbacktoDGHtorevealsignificantdamage
tofrontallobe• Significantdifficul:esinreturntohome/schooldue
toviolentbehavior• EPrecommendsBrainInjuryService• Re-referraltoCAMHS:interven:onfrompsychiatry
andpsychology• ReferraltoCCPNR• Statement/EHCPprocessini:ated• Referredtospecialistinpa:entadolescentbrain
injuryunit(fundedbysocial,educa:onandhealthservices)
• CCPNRintegratedwithinpa:entunittosupporttransi:onhome
4yearspostinjury
12monthspostinjury
6yearspostinjury
7yearspostinjury
LocalInnova:onintheNHS
• Sharingtheknowledge,sharingthevision– ChildandAdolescentPsychologyLead,CambridgeandPeterboroughFounda:onTrust/UniversityofCambridge
– ManagerNeuropsychologist,OliverZangwillCentre,
– Founder,OliverZangwillCentre,
2003-2007
LocalInnova:onintheNHS
• Sharingtheknowledge,sharingthevisionANDbringinginthebusiness– DirectorofBusiness,CambridgeandPeterboroughFounda:onTrust/UniversityofCambridge
2007-2008
LocalInnova:onintheNHS
• Demand/CapacityPlanning,Demand/CapacityPlanning,Demand/CapacityPlanning,– Hospitalfigures– Solicitorfigures– Insurancefigures
2008-2009
LocalInnova:onintheNHS
• Knowingthemarket– Needsfamilieshaveiden:fied– Needshavecommissionersiden:fiedandwhatcostsdotheywanttosave
– Marketcost(£30k)
2008-2009
LocalInnova:onintheNHS
• MeeEngtheneed– Whatmodelsarealreadyworking?– Inwhatcontextaretheyworking?– Whatwillresource(costandcare)sustain?
– Itera:veshapingoftheservicemodel
2008-2010
LocalInnova:onintheNHS
TheCambridgeCentreforPaediatricNeuropsychologicalRehabilita:on(CCPNR)
2010
T
Acute
Community
• TBIinRTCaged15years• EmergencyNeurosurgery• TransferredtoPICU• Transferredtoacutechildren’sward• Furtherneurosurgeryandtraumasurgery• AcuteMDTrehab• CCPNRatDischargePlanningMeeting• Referredtocommunityservices(SLT,OT,Physio)• CCPNRassessment• Specialistteacherliaisonwithschool:graded
return• Familysupport,psychoeducationand
adjustment.Cognitiverehabbegins• Changetoappropriatecollegecourse-EP• Trainingforallthosesupportingincollegeand
communitytounderstandinjuryandintegratecogrehabintocontacts
• ReferralandsupportedtransitiontoadultcommunityTBIservice3years
postinjury
4monthspostinjury
Rela9onalcommissioning
Inter-organisa9onalnetworks
Formalandinformalcommunica9on
Combinedgoals
System-Collabora:on
System-collabora:on
Needs-led
Servicedemanddata
Epidemiologicaldata
HealthEnvironment
SaturatedwithSharedInforma:on
Case-Collabora:on
Recep9veContext
Poisedforchange
Innova:on-valuefit
Minimisedcompe:ngdemands
Speedofac:on
Toleranceofdifferenceandmistakes
Personalcommitment
Psychologicalsafety
WhatWeCouldHaveDoneBeYer
Humphreyetal.,underrevision
“thebestperformingsystemsarecharacterisedbyintegra:onofcommissioningandprovision”
Kelly,E.(2008).ForwardtohealthcarecommissioningintheinternaEonalcontext:Lessonsfromexperienceandevidence.Birmingham:UniversityofBirmingham,HealthServicesManagementCentre.www.hsmc.bham.ac.uk
Ac:ngClinicalLeadClinicalPsychologist
DrSuzannaWatson 0.5WTE
TeamCo-ordinator JennyCahill 0.8WTE
ConsultantClinicalNeuropsychologist
DrFergusGracey 0.05WTE
ConsultantPaediatricNeurologist
DrAnnaMaw 0.05WTE
ConsultantChildandAdolescentPsychiatrist
DrJoHolmes
0.05WTE
PaediatricNeuropsychologist DrCatherineHarter 0.1WTE
SpecialistTeacher LorraineAus:n 0.6WTE
SpecialistOT PaYyVanRooij 0.4WTE
SpecialistOT StellaParry 0.2WTE
HighlySpecialistSLT GillianShravat 0.4WTE+0.2CLAHRC
ClinicalPsychologist DrAareNinteman 1WTE
AssistantPsychologist MeghanMc-Hugh-Harvey 0.4WTE
ResearchAssociatefromUEA DrDarrenDunning 0.1WTE
AllAcceptedandFundedReferrals
0
5
10
15
20
25
30
35
2009/10 2010/11 2011/12 2012/13 2013/14 2014/15
FinancialYear
Total
Cambridgeshire&Peterborough OtherNHS PI
AllAcceptedandFundedReferrals2009-2015
Peterborough13%
Bedfordshire5%
Buckinghamshire2%
Lincolnshire4%
London1%
Luton3%
Northamptonshire1%
Norfolk9%
Suffolk3%
GtManchester1%
Cambridgeshire49%
Essex9%
Cambridgeshire
Peterborough
Bedfordshire
Buckinghamshire
Essex
Lincolnshire
London
Luton
Norfolk
Northamptonshire
GtManchester
Suffolk
CCPNR:AllReferralsDecember2013-December2014
Referrals 46
Accepted 38
%Male 59
Averageage 11.6years(2.5-17.6years)
Averagenumberofyearspostinjury
3.7years(15days–14.6years)
Cambridgeshire41%
Peterborough11%
Norfolk11%
Lincolnshire7%
Essex7%
Suffolk5%
Bedfordshire4%
Berkshire2%
Buckinghamshire2%
Hersordshire2% Leicestershire
2%
London2%
Luton2%
Staffordshire2%
Cambridgeshire Peterborough Norfolk Lincolnshire Essex
Suffolk Bedfordshire Berkshire Buckinghamshire Hersordshire
Leicestershire London Luton Staffordshire
CCPNR:AcceptedReferrals(December2013-December2014)
Neurology35%
Paediatrics18%
CaseManagement
9%
Psychology9%
Psychiatry9%
Nursing9%
GP7%
OT2%
S<2%
ReferralSource
Neurology Paediatrics CaseManagement
Psychology Psychiatry Nursing
GP OT S<
TBI32%
Fall24%
Encephali:s14%
Meningi:s11%
Stroke8%
Tumour5%
Asphyxia3%
Abscess3%
Injury
TBI Fall Encephali:s Meningi:s
Stroke Tumour Asphyxia Abscess
2%NAI
CCPNR:Mul:agencyworking(Acceptedreferrals,December2013-December2014)
YoungPerson&FamilyatCCPNR2014
SEN,24%
LocalPaediatrician,
39%
GP,100%
SocialCare-
Locality,16%
SocialCare-CIN,
11%
CommunityTherapies,
16%
CBIT,37%
Residen9alrehabilita9on,
5%
CaseManager,
13%
CAMH,13%
Solicitor,13%
CJSApprox2%
Neurology,47%
SocialCare–Child
protec9onApprox5%
Interdisciplinaryassessment
• Basedontheapplica:onoftheWHO-ICFframeworktorehabilita:on(Wilson,GraceyandEvans2009)
• withadevelopmentalandsystemicperspec:ve(e.g.PEDSmodel:Physical,Execu:ve,DevelopmentalandSystemsfromReed,ByardandFine2011)
Interdisciplinaryinterven:on
Shortrehabilita:onpackage20hoursdirectcontact:20hoursindirectFullprogramme60hoursdirectandindirectPNImodelGoalsplannedwithchildfamilyandsystem
Mediatorsofinterven:on?
• Pre-morbidmentalhealth• Pre-morbidfamilyfunc:oning• Execu:vefunc:oningpredictsindirectcontact(andDNArateinmentalhealthservices)Cocksedge,GraceyandWagner,2014
• Complexity(StaceyMatrix)
Whatnext?
Developmentofneurorehabilita:onservicesfromacutetocommunity.
Firstpersonwhoisawareofanewcasesendsthisemailalerttogroupemail.Instruc:ontostartinterven:onsenttoappropriateprofessionals/teams.Casefilecreated.
ChildsustainsTBI–
AdmiYedtoED
Professionalsinvolvedliaisetoallocatecoordinator(ouenSpecialistNurse)withdailycontactRoletobedefinedbutmustinclude:1. Rehabprescrip:onor
Ini:alformula:onstarted(traumaonly)
2. Visual:metable(PlayorOT)
3. Expecta:onmanagement
4. Checklistoftasks/informa:onforcoordinator
5. Informa:ononphysical/mentalhealthissues
6. Arrangededicatedsocialworker&/ordedicatedtherapyinputrequired
7. Informa:onthatcanbeprovidedforthefamily.
8. LeYertoGP,Paediatricianandschool
NB:Personwhoactsascoordinatorwillchangeaschildmovesthroughthepathway.
Pre-opassessmentsundertakenincludingoutcomemeasures.Conductedbyphysio,OTorSLT(Idealwouldbetohaveasingleassessmenttool/record).
PaediatricRehabilita9onPathway:1.AcuteCare/Inpa9entPhase
Emailalertfornewbraintumour
diagnosis&admission
TransferredtoPICU.
Scan&inter-cranialpressuremonitored
Treatmentprocessbegins
CoordinatedMDTassessmenttoiden:fygoals&developacuterehabcareplan.
Surgerytakesplace.
AdmiYedtoEDwith
temperature/sickness/NAI/Stroke
Scancarriedout–parentsinformedsuspectedencephali:s
RegularMDTmee:ngswithfamily-significantinfotobesharedpriortothemee:ngitselftoallow:metoprocess
Ifrequired,commencediscussionwithcommissioners
Diagnosisconfirmed
Coordinator:Liaison/handoverwithacutechildren’sward
Counsellorsatwardround+neurologymtgavailablefor
families
SLTs:Dysfluency,Dysphagia,Dysarthria/Dyspraxia/VPI,AAC,Apahsia(anomiccommon),WFD,Echoandpalilalia
Therapyinput(OT,SALT,die::an,Physo,play)providedforallbraininjuredchildrenasrequired+hospitalschool.PTAScreening(GCS>15)
Isthechildstableenoughtostepdowntoacute?Doesthefamilyrequiresupport?Isacuterehabrequired?
PaediatricRehabilita9onPathway:2.AcuteRehabilita9onPhase
Therapyinput(OT,SALT,die::an,Physio,play)providedforallbraininjuredchildrenasrequired+hospitalschool.PTAScreening(GCS>15)
Dothefamilyrequirespecialistinfo&
support?
Coordinator:Ifyes,referorsignposttorelevantorganisa:onorservicee.g.CBIT
Istheacuteepisodeof
carecomplete?
Isaddi:onalsupport
requiredinthe
community?
AcuteMDTmee:ngs(minimumweekly).GASgoalmonitoring
Coordinator:Arrangemee:ngsbetweenmembersofMDT&familyasrequired(toensureclarityaboutcareplans,prognosisetc)
Coordinator:EnsuresReferralstoCCPNR,OT,S<,Physio&Comm.Paeds.,asrequired.MakescontactwithschooltomakeappropriatesupportarrangementsforsupporttoaccesscurriculumatschoolEnsurethatfamilyissupportedtoaccessappropriateresources/supportnetworks.
Psychologyinvolvedwhenemo:onalorbehaviouraldifficul:es.
FIM/FAM+Cogni:vescreentosupportdischarge
HospitalteacherscarryoutbasicassessmentofacademicaYainment,liaisewithschooland
structuresupportaccordingly
SLTs:Dysfluency,Dysphagia,Dysarthria/Dyspraxia/VPI,AAC,Aphasia(anomiccommon),WFD,Echoandpalilalia
Transfertoacutechildren’swardforin-pa:entrehabilita:on
PaediatricRehabilita9onPathway:3.CommunityRehabilita9onPhase
Isthepa:entmedically&therapu:callyreadytogohome?
Dischargemee9ng:AYendedbyallinvolvedwiththechildincludingCCPNR,socialcare&educa:on.Coordinatorrolewilltransfertonewpersontoensure:1. Consistent
regulartherapy–nolagbetweeninpa:ent&communityprovision
2. Agreed:metable&plantomeeton-goingcare&therapyneeds
3. Expecta:onmanagementfromdischargetocommunity.
Furtherdetailedassessmentand/orShortrehabpackage:Communitybasedtherapycommences(&on-going).
Timelimitedperiodofcoordina:onpost-discharge.Coordinator’sroleistoensureregularfollow-upcontactismade–follow-upclinicsoonauerdischargewithmostappropriateclinicianorprofessionalsaYending.Ini:alAssessmentat3months
Dischargedhome
On-goingMDTinterven:on&goalsexng&reviewasappropriatetocompleterehabilita:on.
PsychologistsprovideNeuropsychologicalassessment(e.g.IQ,aYen:on,memory,execu:vefunc:oning,academicaYainment)
+Psychological(emo:onal/behavioural)assessmentandinterven:onforchildandfamily(emo:onal/behavioural/
cogni:verehabilita:on)
SpecialistteacherworksinliaisonwithMDTandschoolstaff(SENCo,HeadTeacher,TAs)toiden:fystrengthsand
difficul:es,deliverstrainingandongoingmonitoringandliaisontosupportaccesstothecurriculum
SLTassessmentandinterven:onforWFDs,CogComm,Socialunderstanding,Pragma:cs,Aphasia,Lowcommunica:onconfidence,Literacydifficul:esDysarthria/Dyspraxia/VPI
OT:FineMotorAxandinterven:on,VisualPercep:on,Handwri:ng,sensoryintegra:on,VisualMotorIntegra:on,Fa:gueandAc:vity/SleepMx,Goalsexng,Prac:calskills;Interven:onrelatedtoFM,Independentlivingskills,gradingofac:vity,advicetoschoolsrealloftheabove,closeworkingwith
localCommunityOTservices
