Respite Services for Children
with Life-Limiting Conditions
and their Families in Ireland
Ó A National Needs Assessment
Published 2013
Ó Contents
Foreword
2
Executive Summary
4
Section 1: Introduction to respite services for children with life-limiting conditions
7
1.1
1.2
1.3
1.4
1.5
Introduction
Backgroundtorespitecareforchildrenwithlife-limitingconditions
Meetingtherespiteneedsofchildrenwithlife-limitingconditions
Clinicalgovernanceinchildren’srespiteservices
Conclusion
Section 2: Estimation of the prevalence of life-limiting conditions in children, and
overview of current respite service provision
2.1
2.2
2.3
2.4
2.5
2.6
Introduction
Methodology
Nationaloverviewofchildpopulation
Prevalenceoflife-limitingconditionsinchildren
Nationaloverviewofrespiteservices
Conclusion
Section 3: Future development of services to meet the respite needs of children
with life-limiting conditions
3.1
3.2
3.3
3.4
3.5
3.6
3.7
3.8
3.9
3.10
3.11
Introduction
Populationprojections
Quantifyingtheneedforrespitecare
Locationofrespitecare(within/outsideofthehome)
Projectassumptions
Projectedfutureneedforrespiteservices
Financialprojections
Categorisingrespitecare
Assumptionsunderpinningthecalculatedcosts
Costofrespiteoptions
Limitationsofthefinancialprojections
Section 4: Conclusion and implementation
4.1
4.2
4.3
4.4
Introduction
Currentserviceprovision:themainissues
Recommendationsandimplementationoffindings
Conclusion
7
8
16
17
17
18
18
18
18
19
22
31
32
32
32
32
34
34
35
37
38
38
39
42
43
43
43
45
46
References
47
Appendices
49
1
Ó Foreword
Itisalwaysatragiceventwhenachilddies.Inmanysenses,childrenarenotsupposedtodie–
buttheydo.InIrelandapproximately450childrendieeachyear,350ofthemfromalife-limiting
condition.Thejourneytowardsdeathisadifficultandemotiveoneandfamiliesneedallthesupport
andhelptheycanget.Respitecareisaimedatsupportingfamiliesalongthatjourney,helpingthem
tosustaintheirenergy,commitmentandmentalhealth.Thegoalofrespitecareforchildrenwith
life-limitingconditionsistoprovidetimeoutforcaregiverswhoareprovidingthebulkofcareto
theirchild–togetsomerest,tendtootherchildrenorsimplydotheweeklyshopping.Frequently,
parentsareexhaustedbutdesperatelywanttokeepgoing–respitecaregivesthemstrengthand
isanessentialelementofchildren’spalliativecare.
In2010theDepartmentofHealthandChildrenformallylaunchedPalliative Care for Children with
Life-limiting Conditions in Ireland – A National Policy. Thereportnotedthat,“in order to provide
support to children with life-limiting conditions and their families primary care services need to be
developed, including the provision of a Consultant Paediatrician with a Special Interest in Palliative
Care and Outreach Nursing posts, therapy posts, Hospice-in-the-Home and respite care (both in
home and away from the home) in each of the HSE regions.”Thepolicywentontomaketwo
specificrecommendationsregardingrespitecare:
• Arangeofrespiteservicesshouldbedevelopedforchildrenwithlife-limitingconditions
andpalliativecareneeds.
• EachHSEareashoulddevelopaplanforrespitefacilitiesforchildrenwithlife-limiting
conditionsandtheirfamilies.
In2010arespiteneedsassessmentwasundertakenintheDublinNorth-EastandDublinMidLeinsterregionsoftheHealthServiceExecutive(IHF/CSH,2011.JointlycommissionedbytheIrish
HospiceFoundationandtheChildren’sSunshineHome,itsetouttoassesstherespiteneedsof
familiescaringforachildwithalife-limitingconditionandrequiringpalliativecareintheseregions.
Sincethepublicationofthisreport,ithasbecomeclearthatanationalrespiteneedsassessment
isrequiredifservicesaretobeplannedanddevelopedequitablyacrossthecountry.
Theintentionofthisnewreportistoprovideanationaloverviewofthecurrentprovisionofand
futureneedforrespitecareforchildrenwithlife-limitingconditions.Onceagaincommissionedby
whatisnowLauraLynn,Ireland’sChildren’sHospice(formerlytheChildren’sSunshineHome)and
theIrishHospiceFoundation,inpartnershipwiththeHSE,itseekstoprovideaclearoverviewof
nationalrequirementsforrespiteaspartofapalliativecareserviceforchildreninIreland.
Buildingontheworkofthe2011DublinNorth-EastandDublinMid-Leinsterreport,thisneeds
assessmentprovidessomenewandupdatedinformationontheservicescurrentlyprovidedinall
areasoftheHSE,includingHSEWestandSouth.Thedatausedforallareasreferstothesame
timeperiodtoprovideuniformityandallowforcomparison.Theliteraturereviewhasbeenupdated,
andwherepossible,allfigureshavebeenupdatedandverified.
2
Inpresentingthisreport,weacknowledgethatforanumberofreasons,thedataarenotcomplete.
Wherefiguresareestimated,allinformationavailablehasbeenusedtoensurethattheyareas
accurateaspossible.Itwasdifficulttocapturethedataregardingcurrentserviceprovision.Inmany
casesthiswasduetotheambiguitysurroundingdefinitionsandterminologycurrentlyinuse,which
meantthatinsomecasesserviceproviderswereuncertainastowhethertheyprovidedrespiteto
childrenwithlife-limitingconditionsornot,andwhethertheirservicesshouldbeincluded.
Thefindingsofthisreportindicatethatservicedeficitsexistandthataccessingrespiteservices
canbechallengingforfamilies.Inordertoprovidechildrenwithlife-limitingconditionsandtheir
familieswithappropriateandtimelyrespitecare,itisnecessaryfirsttobuildourunderstandingof
whatconstitutesgoodrespitecareandsubsequentlytoexpandtheprovisionofqualityservices.
ThisissomethingtheNationalDevelopmentCommitteeforChildren’sPalliativeCareiscurrently
addressing.
Inpresentingthisreportweacknowledgetheworkoftheauthors/projectteamledbyJulieLing,
thesteeringcommitteewhoguidedit,thecontributionofProspectusConsultinginpreparingthe
2011report,andtheprojectadvisorygroupforthatreport,whoprovidedsomeofthedefinitions
andcostingsthatformedthebasisforthisneedsassessment.
Sharon Foley
CEO
TheIrishHospiceFoundation
Philomena Dunne
CEO
LauraLynn,Ireland’sChildren’sHospice
February 2013
3
Ó Executive Summary
Thediagnosisofalife-limitingconditioninachildisanimmensechallengeforafamily.Although
caringforachildwithalife-limitingconditioncanbephysicallyandemotionallydemanding,most
parentswishtocarefortheirchildathome.Regularrespiteprovidesvaluablesupporttofamilies
ontheircarejourney,andtheavailabilityoftheappropriaterangeofrespiteservicescanassist
familiesinmakingthebestdecisionregardingthelocationofcarefortheirchild.
In2010theDepartmentofHealthandChildrenpublishedPalliative Care for Children with Lifelimiting Conditions in Ireland – a National Policy (DoHC,2010).Thispolicyprovidesthefoundation
forthedevelopmentofpaediatricpalliativecareservicesinIreland.Thesignificanceofrespitecare
as a component of children’s palliative care is reflected in the policy document, which
recommendedthat:
• arangeofrespiteservicesshouldbedevelopedforchildrenwithlife-limitingconditions
andpalliativecareneeds
• inpatient hospice beds specifically for respite should be developed as part of the
children’spalliativecareservice.
• eachadministrativeareaoftheHealthServiceExecutive(HSE)shouldplananddevelop
respitefacilitiesforchildrenwithlife-limitingconditionsandtheirfamilies.
Oneoftheprioritiesidentifiedinthenationalpolicywasanauditoftheneedforrespiteservicesfor
children with life-limiting conditions and their families. In response, and to assist with the
implementationofthepolicy,theIrishHospiceFoundationandLauraLynn,Ireland’sChildren’s
Hospice,inpartnershipwiththeHSE,undertookanationalneedsassessmentinlate2012to
identifyexistingservicesandtoassesscurrentandfutureneed.Thefindingsarepresentedinthis
report.
Thisprojecthasbuiltonasimilarexercisealreadyundertakenin2010.Theoriginalstudywas
confinedtojusttwoHSEregions,DublinNorth-EastandDublinMid-Leinster.Thepresentneeds
assessmentreplicatedthisstudyinHSESouthandHSEWest,whilealsoendeavouringtoupdate
thedatafromthetworegionspreviouslysurveyed.Ithasthereforesoughttoprovideanational
pictureacrossallfourHSEregions.
Obtainingaccuratedataonrespiteservicesforchildrenwithpalliativecareneedsischallenging,
notleastbecauseofalackofconsistencyintheuseoftermsanddefinitions–forexamplein
relationtowhatconstitutesa‘life-limitingcondition’.
Theneedforrespiteservicesforchildrenwithlife-limitingconditionsisprojectedtosteadilygrow
overtheperiodanalysed,2011-2021.Families’respitecareneedsaredynamic,changingover
time.Serviceplansanddeliverymustthereforebeflexibleandresponsive,andrespitecareshould
bemadeavailablebothwithinthefamilyhomeandoutsideofit,forexampleinachildren’shospice
orrespiteunit.
4
Thisneedsassessmenthasfoundthatwhilerespiteservicesforchildrenwithlife-limitingconditions
arecurrentlyprovidedinallfourHSEregions,accessisoftendependentonthenatureofthechild’s
diagnosisandthepartofthecountryinwhichthefamilylivesratherthanonneed.
Arangeofrespitecareprogrammes,developedinastructuredandcoordinatedway,willberequired
tomeettheneedsofatleast816childrencurrently,andupto925childrenby2021.Itisestimated
thatthedevelopmentandoperationofthesixformsofrespitecareoutlinedinthisneedsassessment
willrequireabudgetinexcessof€7.6millionperannumcurrently,risingto€8.6millionby2021.
Thesecostsarebasedona70:30splitbetweenin-the-homeandout-of-homerespitecare.
Ifappropriaterespiteservicesaretobeprovided,anumberofkeyactionsneedtobeundertaken.
Amongtherecommendationsmadearethefollowing:
• ThroughtheNationalDevelopmentCommitteeforChildren’sPalliativeCare,national
standardsshouldbedevelopedforrespitecare,andthefeasibilityofdevelopingan
assessmenttoolforrespiteservicesshouldbeexplored.
• Regionalgroupsshouldbeestablishedtoprogressthefindingsofthisreport,with
representationfrompaediatrics,disabilityservices,acuteandcommunityservices,
children’soutreachnursesandspecialistpalliativecareservices.Thesegroupsshould
befacilitatedtomapthefullrangeofexistingrespiteservicesforchildrenwithlifelimitingconditions,identifywhereservicesneedtobedeveloped/providedandensure
thatnationalstandards,whendeveloped,areimplemented.
• Asregardsrespitecareoutsidethehome,thehealthservicesshouldworkwithregional
service providers, both voluntary and statutory, to ascertain, among other things,
whetherfacilitiesalreadyavailablemaybefurtherdevelopedtomeettheneedsof
children with life-limiting conditions, and to identify where additional facilities are
required.
• The education and ongoing support needs of organisations providing respite care
shouldbeconsideredbothnationallyandregionally.
Finally,itisrecommendedthatthisneedsassessmentshouldberepeatedinfouryearstime,by
whichpointitishopedthattangibleimprovementswillbeseenintheprovisionofrespiteservices
forchildrenwithlife-limitingconditionsandtheirfamilies.
5
Figure1 Administrative areas of the Health Service Executive
•
Donegal
•
Sligo/Leitrim
•
Cavan/Monaghan
•
Mayo
Louth
•
•
Roscommon
•
•
•
••
•
Kildare/
•
West
•
••
Wicklow•
Longford /
Westmeath
Meath
•
Galway
•
Laois/Offaly
•
Wicklow
•
Clare
•
North Tipperary
East Limerick
Dublin North Central
Dublin South City
Dun Laoghaire
Dublin South East
Dublin South West
Dublin West
•
Carlow /
Kilkenny
•
North Dublin
North West Dublin
•
Wexford
Limerick
South Tipperary
•
•
•
North Cork
Kerry
North Lee
•
West Cork
•
• Lee
South
Waterford
•
DublinNorth-East
DublinMid-Leinster
South
West
6
Ó SECTION 1
Introduction to respite services for children
with life-limiting conditions
1.1 Introduction
Planningrespiteaspartofpalliativecareservicesforchildrenischallenging.InIrelandthereisa
dearthofaccuratedataonthelocationandnumberofchildrenlivingwithlife-limitingconditions
whorequirerespiteservices.Thislackofinformationisinpartduetoalackofclaritysurrounding
thedefinitionsusedinchildren’spalliativecare,forexample,definingwhatconstitutesalife-limiting
orlife-threateningcondition.Whilediagnosiscanbehelpfulinidentifyingchildreninneedofrespite
services,itmustbeconsideredinconjunctionwithotherfactors,suchastheindividualneedsof
thefamily,theseverityoftheconditionandanyotherrelevantcomplications.Inthisdocument
the term ‘life-limiting condition’ will encompass ‘life-threatening conditions’, as described in
Section1.2.
Insomecasesthereisanoverlapbetweenchildren’spalliativecareservicesanddisabilityservices,
anditisthereforeattimesunclearwhethertherespitecarethatchildrenarereceivingis‘palliative’
orpartofaregulardisabilityrespiteservice.Thisposeschallengesnotonlyforserviceusersbut
fortheplannersandprovidersofrespitecareforchildrenwithlife-limitingconditions.
Thisreportsetsouttopresentaneedsassessmentforrespiteservicesforchildrenwithlife-limiting
conditions in the Health Service Executive’s (HSE) South and West administrative regions. In
addition,theprojectteamundertooktoupdatethedatapresentedinasimilarneedsassessment
undertakenin2010fortheHSE’sDublinNorth-EastandDublinMid-Leinsterregions(IHF/CSH,
2011). This involved analysis of existing reports and available data, as well as examining
internationalbenchmarkssuchastheworkoftheAssociationforChildrenwithLife-threateningor
TerminalConditionsandtheirFamilies(ACT)intheUK.
ThepresentprojectreplicatedtheDublinNorth-East/DublinMid-Leinsterneedsassessment.The
structureandformatofthepreviousreporthavebeenlargelymaintainedinordertoprovidethe
HSEwithaconsistentframeworkforestablishinganationalrequirementforrespiteservicesfor
childrenwithlife-limitingconditions.Manyaspectsoftheoriginalstudywererelevanttotheneeds
assessmentforHSESouthandWestalso.
Both the South and the West regions have their own unique services which currently provide
supportforchildrenwithlife-limitingconditionsandtheirfamilies.IncooperationwiththeHSE,and
inordertoensureengagementwithalltherelevantnationalandregionalexpertsinpaediatricand
palliativecare,theprojectteamestablishedregionalsupportgroupsfortheneedsassessmentin
bothregions(Appendix2).
7
Theobjectivesofthestudywereto:
• EstimatethenumberofchildrenintheHSESouthandWestadministrativeregionswho
arelivingwithalife-limitingconditionandwhosefamiliesneedorhaveaccesstorespite
services.
• Wherepossible,updatetheinformationprovidedinthepreviousreportonHSEDublin
Mid-LeinsterandDublinNorth-East.
• Establishasaccuratelyaspossiblecurrentservicelevelsandlocationofcare.
• Wherepossible,identifythegapbetweentheprojectedneedforrespiteservicesfor
childrenwithlife-limitingconditions(basedonage,location,condition)andthecurrent
levelsofrespitecareprovided.
• Estimatethecostofprovidingappropriateservicestochildrenbasedonpopulation
estimates.
InSection1,palliativecareandrespitecareforchildrenwithlife-limitingconditionsaredefinedand
described.TheinternationalexperienceisoutlinedandrelevantIrishpolicyreviewed.Categories
ofrespitecarearepresented,alongwithabriefoverviewofnationalandregionalserviceprovision,
andsomeexamplesaregiven.Theissuestobeconsideredinrespondingtotherespiteneedsof
childrenwithlife-limitingconditionsarediscussed.Thissectionconcludeswithrecommendations
foraclinicalgovernanceframeworkforrespiteservices.
1.2 Background to respite care for children with life-limiting conditions
Life-limiting conditions in children
Alife-limitingconditioninachildisdefinedas“any condition from which there is no reasonable
hope of cure and from which the child or young adult will die (ACT,2009).Whilethemajorityof
childrenwithsuchaconditionareunlikelytolivebeyond18years,someofthosediagnosedin
childhoodcansurviveunexpectedlyintoearlyadulthood.
Life-limitingconditionsinchildrencanbediagnosedeitherpriortobirthorduringchildhood,with
theexpectationthattheconditionwillleadtoprematuredeath.ACTalsoprovidesacategorisation
oflife-limitingandlife-threateningconditionsthataffectchildren(Table1).
8
TABLE 1 ACT categories of life-limiting conditions (ACT, 2009)
1. Life-threateningconditionsforwhichcurativetreatmentmaybefeasiblebutcanfail,
where access to palliative care services may be necessary when treatment fails.
Childreninlongtermremissionorfollowingsuccessfulcurativetreatmentarenot
included.Examples:Cancer, irreversible organ failures of heart, liver, kidney.
2. Conditionswhereprematuredeathisinevitable,wheretheremaybelongperiodsof
intensive treatment aimed at prolonging life and allowing participation in normal
activities.Example:Cystic fibrosis.
3. Progressive conditions without curative treatment options, where treatment is
exclusivelypalliativeandmaycommonlyextendovermanyyears.Examples:Batten
Disease, muscular dystrophy, mucopolysaccharodosis.
4. Irreversible but non-progressive conditions causing severe disability leading to
susceptibilitytohealthcomplicationsandlikelihoodofprematuredeath.Examples:
Severe cerebral palsy; multiple disabilities, such as follow brain or spinal cord injury.
InIreland,thereisanaverageof423deathseachyearinchildrenunder18yearsofage.(Table2).
Ofthese,322diefromoneofthelife-limitingconditionsidentifiedintheACTcategoriesshownin
Table1.
TABLE 2
Mortality data for children under 18 years in Ireland, 2005-2010 (CSO, 2012)
Year
Number of deaths
Number of deaths from
life-limiting conditions
2005
417
292
2006
421
321
2007
413
306
2008
462
347
2009
403
316
2010
423
348
2,539
1,930
423
322
TOTAL
Average annual
no. of childhood
deaths
9
Children’s palliative care
Children’spalliativecareisauniqueandhighlyspecialisedfieldofhealthcarewhichfocuseson
improvingthequalityoflifeofchildrenwhoarelivingwith,ordyingfrom,alife-limitingcondition.
Theneedsofchildrenwithlife-limitingconditionsdiffersignificantlyfromthoseofadults,and
professionalsandcare-giverssupportingchildrenthereforerequirespecifictrainingandexpertise
todealwiththeiruniqueneeds.Ideally,supportforthosewithpalliativecareneedsstartsatthe
timeofdiagnosis,andformanychildrenwithlife-limitingconditionsthiscanbebirth.Thereisa
notableoverlapbetweentheneedsofchildrenrequiringpalliativecareandthosewithdisabilities
andothercomplexcareneeds.
Life-limitingconditionsinchildrenareoftenmarkedbyanunpredictablediseasetrajectory.Some
childrenrequirepalliativecareforafewdaysormonthswhileothersmayliveintoadulthoodand
mayrequirecare,includingrespitecare,overmanyyears.
Palliativecareforchildrenembracesthewholefamily.Despitestrugglingtocopewithadiagnosis
ofalife-limitingconditionintheirchild,homeremainsthecarelocationofchoiceforparentsand
families who, with support, often take on the child’s personal and nursing care. Respite is a
necessarycomponentofthiscare.
Respite care in children’s palliative care
Inthecontextofchildren’spalliativecare,respitecarehasbeendefinedas:“the provision by
appropriately trained individual(s) of care for children with life-limiting conditions for a specified
period of time, thus providing temporary relief to the usual caregiver.” (Horsburghetal.,2002).
Respiteisanessentialelementofacomprehensivepalliativecareserviceforchildrenwithlifelimitingconditionsandtheirfamilies,providingabreakforbothchildandfamily.
Therespiteneedsofthefamiliesofchildrenwithlife-limitingconditionstendtovaryconsiderably
andcanbedeterminedbyanumberoffactors,including:
•
•
•
•
•
thechild’scondition
thechild’sage
thehomeandfamilysituationofthechild
thechild’sdiagnosisandprognosis
thecapacityofparentsandotherfamilymemberstomeetthechild’sneeds.
Caringforachildathomewithcomplexcareneedscanbechallengingandaffectsallmembersof
the family (Emond and Eaton, 2004), with many parents finding it to be both physically and
emotionallystressful(Llewellynetal.,1999).Often,despiteinitialreluctancetouserespiteservices,
parentsfindrespitebeneficial(Eaton,2008).Respiteenablesfamiliestohaveabreakfromthe
routineofcaringandtospendmoretimecarryingoutsomeofthenormaldailytasks,suchas
shoppingorspendingtimewiththeirotherchildren.
10
Forchildrenwithlife-limitingconditions,respiteneedsaredynamicandlikelytochangeovertime.
Thisposeschallengesforprovidersofrespitecarewhentryingtobeflexibleandresponsivetothe
needsofachildandfamily.Whererespiteisprovided,parentsunsurprisinglypreferservicestobe
availablelocally(DoHC,2010).Respitecaremustbeprovidedinamannerandlocationacceptable
tothefamily;wherepossibleitshouldbeflexibleandtailoredtomeettheindividualneedsofeach
family(Ling,2012).
ACT(2009)givessevenexamplesofthetypeofshort(respite)breaksfamiliesmayrequiretoenable
themtocarefortheirlife-limitedchild(Table3.).InIrelandnotallofthesetypesofshortbreakis
currentlyavailable.
TABLE 3 Short break provision
Hospice/hospice at home –helpsfamiliestohaveabreaktogetherortimetothemselves
inahome-from-homeenvironment,orinafamily’sownhome.
Statutory funded short breaks in the home –communitychildren’snursesandcompetent
carers delivering short breaks in the home to children with medically complex needs,
sometimesfundedthroughcontinuingcare.
Sitting services –peoplewhoregularlyvisitthechildinhisorherhome,enablingparents
tospendtimewiththeirotherchildren,haveaneveningoutorjustdoroutinethingssuch
asshopping.
Befrienders/activity services – people who take the child out in the community, for
exampletothecinema,swimming,tothepark,shoppingorawidevarietyofotheractivities.
Short break fostering –peoplewholookafterthechildinthecarer’sownhome,perhaps
foronenight,aweekendorlonger,dependingonthechild’sneeds.
Community houses –wherechildrenandyoungpeoplecanhavetheopportunitytobe
creativewitharts,crafts,andtakepartinotheractivitieswithinthecommunity.
Domiciliary care – care provided at home which gives help with the child’s personal
care/domestictasks.
AnindependenteconomicreviewofpalliativecareservicesforchildrenintheUKconfirmedthat
due to a general lack of community-based support, children and young people were being
unnecessarilyadmittedtoacutecare,withanunexpectedlyhighproportionattendingoutpatient
clinicsonaregularbasisforarangeoftestsandprocedures(CraftandKillen,2007).Theauthors
concludedthatthisinflationofhospital-basedactivityputssignificantstrainonthehealthcare
system in general, decreases opportunities to achieve value for money and is not in the best
interestsofchildrenandfamilies.
11
Theysuggestedthatawell-structuredrespiteservicecanreducehospitaladmissions,bothbecauseit
providestheadditionalcommunitysupportsthatmaypreventachild’sconditionfromdeterioratingto
apointwherehospitalisationbecomesnecessary,andbecausemanytherapeuticproceduresmaybe
completedaspartofarespiteprogramme.
International context
Assessmentsoftheneedforpalliativecareforchildrenhavebeenundertakeninmanycountries,
includingIreland,andhaveconsistentlyfoundthefollowing:
• Forchildrenandtheirfamilies,thelocationofchoicethroughillnessandultimatelydeath
ishome.
• Communityresourcesascurrentlyprovidedareinadequatetosupportchildrenathome.
• Thereareinsufficientessentialrespiteservices.
• Theavailabilityofservicesisoftendependentonthelocationofthechild’shomeand/or
thenatureofthediagnosis,withthebetterdevelopedservicesoftenavailableonlyto
childrenwithcancer.
• Communicationbetweenprofessionalsispoorandneedsimprovement.
• Thereisaneedforbettereducationforallprofessionalsandvolunteersinvolvedinthe
careofchildrenwithlife-limitingconditions.
• Thereisadearthofevidenceontheprovisionofrespitecareforchildrenwithlife-limiting
conditions.
Regardlessofcountryoforigin,respiteneedsassessmentsconfirmthatwhilerespitecareisviewedas
beinganessentialcomponentofpalliativecareservicesforchildrenwithlife-limitingconditions,there
aresimplynotenoughrespiteservicesavailabletomeettheneedsoffamilies.Healthcareprofessionals
also recognise the importance of providing respite care. A study to establish the incidence and
prevalenceofchildrenwithpalliativecareneedsinWales(Hain,2005)foundthatrespitecarewasone
ofthekeyneedsreportedbypaediatricians.IntheUK,astudyonrespiteforchildrenwithlife-limiting
conditionsconcludedthatwhererespitecareisofferedonaregularbasis,parentscopebetterwiththe
demandsofcaringfortheirsickchild(Eaton,2008).Respiteprovidesbenefits,especiallyifservicesare
designedwithflexibilityinmindtomeetthechangingneedsofindividualfamiliesandtheirchildren.A
recentreportfromEnglandstatesthat90%ofthe46children’shospicesinEnglandprovideshort
breakstochildrenwithlife-limitingconditions(NationalEndofLifeCareIntelligenceNetwork,2012).
Apaediatricpalliativecaresub-groupoftheEuropeanAssociationforPalliativeCare(EAPC)produced
standardsforthedevelopmentofchildren’spalliativecare(Craigetal.,2008).Thesestandards
suggestthat:
• Respiteservicesforfamilyandchildareessential,whetherforafewhoursorafewdays
atatime.
• Itshouldbepossibletoproviderespitebothinthefamilyhomeandawayfromhome,for
example,inaninpatientchildren’shospice.
TheEAPCstandardsalsorecommendthatallfamiliesshouldhaveaccesstoflexiblerespitecarein
theirownhomeandinahome-from-homesetting,withappropriatepaediatricmultidisciplinarycare.
12
Children’s palliative care policy in Ireland
Theessentialroleofrespiteintheprovisionofpalliativecareforchildrenwithlife-limitingconditions
andtheirfamilieshasbeenacknowledgedintwokeydocumentsfromtheDepartmentofHealth
andChildren.
A Palliative Care Needs Assessment for Children (DoHC/IHF,2005)
AnassessmentofthepalliativecareneedsofchildreninIrelandwaspublishedin2005bythe
DepartmentofHealth&ChildrenandtheIrishHospiceFoundation.Theassessmentattemptedto
identifythenumberofchildrenlivingwithanddyingfromlife-limitingconditions.Challengeswith
definitionsanddataresultedinestimatednumbers,basedonacombinationof:
•
•
•
•
CentralStatisticsOffice(CSO)data
InternationalClassificationofDisease(ICD)coding–seeAppendix3
ACTcategoriesoflife-limitingconditions(Table1)
UKdataontheprevalenceofchildrenwithlife-limitingconditions.
BasedonCSOdataoverthesix-yearperiod1996-2001,itwasestimatedthat370childrenon
averagedieinIrelandeachyearfromalife-limitingcondition,themajority(57%)inthefirstyear
oflife.
UsingIrishpopulationdatafor2002,combinedwithestimatedfiguresfortheprevalenceoflifelimitingconditionsinchildrenintheUK(12per10,000),itwasalsoestimatedthatthenumberof
childrenliving withalife-limitingconditioninIreland,andthusrequiringongoingsupport,was1,369,
withanestimatedriseto1,610bytheyear2021.Acaveataccompanyingthesefigureswarned
thattheywerelikelytobeunderestimates.
Thechildren’spalliativecareneedsassessmentalsoincludedanumberofkeyfindingsthathave
hadanimpactonthepresentrespiteneedsassessment:
• accurateandcomprehensivedataonchildrenwithlife-limitingconditionsisneeded
• thepreferredlocationofcareforachildwithalife-limitingconditionisthefamilyhome,
withparentsreceivingadequatesupport
• theprovisionofreadilyavailable,locally-basedrespitecareisessential
• palliativecareservicesprovidedtochildrenwithlife-limitingconditionsinIrelandare
inequitable, varying significantly according to diagnosis (the nature of the child’s
illness)andgeographiclocation(theregionofresidenceofchildandfamily).
Researchcompletedaspartofthisneedsassessmentalsofoundthathealthcareprofessionals
oftenwishedtorefertorespiteservices.Over80%ofclinicalnursemanagers,31%ofclinicalnurse
specialists,79%ofmedicalsocialworkers,23%ofGPsand45%ofpublichealthnursesconfirmed
thatthey“wished to refer to respite services but that appropriate respite care was not currently
available”. The needs assessment concluded that: “locally based, child-friendly and readily
accessible respite facilities must be a priority in the development of a ‘seamless’ system of care.”
13
Palliative Care for Children with Life-Limiting Conditions in Ireland – A National Policy
(DoHC,2010)
Buildingonthefindingsofthe2005needsassessment, theDepartmentofHealthandChildren
wentontodevelopapolicy,Palliative Care for Children with Life-Limiting Conditions - A National
Policy,whichwaspublishedin2010.Thispolicyprovidesthefoundationforthedevelopmentof
palliativecareservicesforchildreninIreland.
Recognisingtheessentialrolethatrespiteplaysforchildrenwithlife-limitingconditionsandtheir
families,thepolicyincludesfourrespite-specificrecommendationsforimplementation:
• A range of respite services should be developed for children with life-limiting
conditionswhohavepalliativecareneeds.
• EachHSEadministrativeareashouldplananddeveloprespitefacilitiesforchildren
withlife-limitingconditionsandtheirfamilies.
• Hospice-at-hometeamsshouldbedevelopedbytheHSE.
• Inpatienthospicebedsspecificallyforrespiteshouldbedevelopedaspartofthe
children’spalliativecareservice.
Types of respite in children’s palliative care
Thenationalpolicyalsoprovidesfurtherdetailinrelationtothedevelopmentofrespiteservices,
andmakesrecommendationsforbothin-the-homeandout-of-homerespitecare.
In-the-home respite
•
Respiteprogrammesshouldbeagreedonthebasisoftheassessedneedsof
eachchildandfamily.
•
The service should be delivered by specially trained personnel, including
registerednurses,carers.
Forthepurposesofthepresentrespiteneedsassessment,in-the-home respite hasbeenfurther
brokendownintothecategoriesestablishedfortheDublinMid-Leinster/DublinNorth-Eastrespite
needsassessment(IHF/CSH,2011),asfollows:
14
Ó
Category 1: Theprovisionofin-the-homecareforachildwithalife-limitingconditionin
ordertoenableparentsand/orotherregularcarerstotendtootherrequirements/activities.
Thistypeofrespiteistypicallyprovidedbyatrained/accreditedhealthcareassistantora
familymember/friend.
Ó
Category 2: Theprovisionofcarebyanappropriatelyqualifiedandexperiencedregistered
nursewiththerequisiteskillstocareforachildwithalife-limitingconditioninthechild’s
ownhome.
Ó
Category 3: Theprovisionofanextendedrangeofrespiteservicestoachildwithalifelimitingcondition.Careisdeliveredbyanappropriatelyqualifiedandexperiencedregistered
nursewithspecificexpertise/qualificationsinpalliativecareandpaediatrics.
Inrelationtoout-of-homerespitecare,thenationalpolicyrecommends:
Out-of-home respite
•
Out-of-home respite (or ‘centre-based respite’) should take account of the
medicalneedsofthechild,includingthemanagementofsymptoms.
•
Thedevelopmentofnon-specialisthospiceunitsdedicatedtotheprovisionof
respitecareforchildrenwithlife-limitingconditionswillberequired.
Forthepurposeofthisrespiteneedsassessment,out-of-home respite isfurtherbrokendownas
follows:
Ó
Category 1: Theprovisionofsupporttoachildwithalife-limitingconditionatanonspecialistunitbyappropriatelytrainedhealthcarestaff.
Ó
Category 2: Theprovisionofrespitecaretoachildwithinaspecialistunit.Thisinvolves
theprovisionofcare/supporttochildrenbyappropriatelytrainedhealthcarestaff,with
accesstospecialistcareasnecessary.
Ó
Category 3: Theprovisionofanextendedrangeofrespiteservicestochildrenwithlifelimiting conditions. Care is delivered by a registered nurse with specific expertise
/qualificationsinpalliativecareandpaediatricswithinaspecialistunit.
Finally,thenationalpolicyintroducestheconceptofspecialistrespitecareanddefinesitasfollows:
Specialist respite care
Specialistrespitecarereferstoasettingofcare,aprogrammeofcareoraservicethat
providesadditionalservices.Itmaytakeplaceinthechild’shomeorinasettingoutside
ofthehomesuchasahospital,long-termcarefacilityorhospice.Specialistrespitecare
providesthesupportrequiredtomeetthechild’sholisticcareneedsandenableschildren
andfamiliestoaccessshortbreakservices.Specialistrespitecarewilloftenaddress
someaspectsofsymptommanagement.
15
1.3 Meeting the respite needs of children with life-limiting conditions
Ifrespiteservicesaretobedevelopedtomeettheneedsofchildrenwithlife-limitingconditions
andtheirfamilies,thefollowingneedtobeconsidered(IHF/CSH,2011):
• Allfamiliesshouldhavethenecessaryinformationtheyrequiretomakeaninformed
choiceregardingrespiteoptions.
• Allfamiliesshouldbeprovidedwithastandardisedapproachtotheinitiationofrespite
care.
• Astandardisedandconsistentapproachshouldbeutilisedtodeterminethesuitability
ofachildandfamilyregardingthereceiptofrespitecare.
• Anagreedapproachshouldbeinplaceregardingthenotificationofrespiteproviders.
• Allrespiteprovidersshouldhaveagreedacceptancecriteriainplaceregardingtheir
respiteprogramme(s),andthesecriteriashouldbewidelyavailableandunderstoodby
referralagents.
• Allrespiteprovidersshouldhaveagreedoperationalproceduresinplaceregardingthe
reviewofrespiteplacementsandprogrammes.
• Careplansshouldcontainspecificinformationrequirementsandconsiderationregarding
respitecare.
• Careplansshouldbeupdatedonacontinuousandstructuredbasis.
• Communicationschannelsshouldbeinplacebetweenrespiteprovidersandallother
associatedserviceproviderswhereappropriateandnecessary.
• Clearassignmentanddocumentationofresponsibilitywithinandbetweenclinicalteams
shouldbeinplace.
Childrenwithlife-limitingconditionswhorequirerespiteshouldideallyhavebothin-the-homeand
out-of-homerespite,oracombinationofboth,availabletothem.Respitecareneedsaredynamic
andchangeovertime;theplanninganddeliveryofservicesthereforeneedstobeflexibleand
responsiveinordertofullymeettheseneeds.
Out-of-homerespiteshouldbedeliveredinanenvironmentthatreplicatesanormalhomesetting
as far as possible and avoids any association with traditional institutional living or hospital
environments. Future models of out-of-home respite care should also provide modern family
accommodationon-site,enablingparentstoremainclosetotheirchildwhilehe/sheavailsofhighqualitycareandsupport.
ACThasdetailedtherecommendedrangeofservicedeliveryoptionsforfamilieswhereachildhas
beendiagnosedwithalife-limitingcondition–seeAct Care Pathway,Appendix4.Careplans
shouldbedevelopedonthebasisofadetailedassessmentwhichincludesconsiderationofthe
needs of both child and family. Consideration of the appropriateness of respite care is
recommended,withthefurthersuggestionthatthisisrevisitedandreviewedonastructuredand
continuousbasis.
16
1.4 Clinical governance in children’s respite care services
Asinallareasofhealthcare,internationalandnationalbestpracticedictatesthatgoodclinical
governance mechanisms be put in place. The over-arching purpose of introducing a clinical
governanceframeworkistosupportthecreationofanopenandparticipativeenvironment,where
acommitmenttohigh-quality,safe,holistic,childandfamily-centredclinicalcareandsupportis
sharedbyallprofessionalsdelivering,coordinatingandmanagingrespitecare.
Goodpracticerecommendsthateachorganisationprovidingrespitecareshoulddevelopaclinical
governanceframeworkthatwillfacilitatethedeliveryofsafeandrobustservicestochildren,young
peopleandtheirfamilies.
Theframework(IHF/CSH,2011)shouldoutline:
• Astandardisedapproachtoseekingandrespondingtotheviewsofchildren,young
peopleandtheirfamilies,respectingtheirdiverseneeds,choicesandpreferences.
• The delivery of effective clinical outcomes and supports for each child or young
person,basedonevidence-basedpracticeguidelinesandstandards.
• How the respite service enhances the safety of clinical care by using healthcare
processes,clearworkingpracticesandsystematicactivitiesthatpreventorreduce
theriskofharmtoeachchildandyoungperson.
• Proceduresforreviewingtheeffectivenessofclinicalservicesandhealthcaresupports
throughevaluation,auditorresearch.
• Howhealthrecordsandinformationwillbeintegratedandusedtoenhancethequality
andsafetyofservicedelivery,andtoplanforqualityimprovementactivities.
• Strategies for the promotion of continuing professional development and clinical
supervision.
• Competenceassurances,includingclearlinesofresponsibilityandaccountabilityfor
theoverallqualityofrespitecare.
Serviceprovidersshouldnominatealeadcliniciantotakeresponsibilityforthecoordinationofclinical
governancerequirementswithintheirassociatedservice,asoutlinedintheagreedframework.
1.5 Conclusion
Caringforachildwithalife-limitingillnessathomeisstressfulforfamilies.Respitecareconfers
importantbenefitsandisanessentialcomponentofacomprehensivechildren’spalliativecare
service.Problemswiththeuseofdefinitions,andsomeoverlapbetweenchildrenwithneedsarising
fromdisabilityandthosewithpalliativecareneeds,andbetweencorrespondingservices,have
contributedtoalackofaccuratenationaldataonchildrenwithlife-limitingconditionsandtheir
respiteneeds,andcontinuetoposechallengesforserviceplanners.Thekeyroleofrespitecareis
acknowledgedinternationally,andtheIrishGovernment’snationalpolicyonchildren’spalliativecare
includesanumberofrespite-specificrecommendations.Bothin-the-homeandout-of-homerespite
servicesareessential,andarangeofissuesneedtobeconsideredindevelopingthem.
17
Ó SECTION 2
Estimation of the prevalence of life-limiting
conditions in children, and overview of current
respite service provision
2.1 Introduction
InSection2,themethodologyforthisrespiteneedsassessmentisdescribed.Demographicdatafor
eachoftheexistingHSEadministrativeregionsarepresented.Theissueofestimatingthenumberof
childrenwithlife-limitingconditionsisdiscussedinthecontextofavailabledata.Inordertoputthisin
context,internationalestimatesoftheprevalenceofchildrenwithlife-limitingconditionsarepresented.
RespiteservicesforsuchchildrenascurrentlyprovidedineachofthefourHSEregionsaredescribed,
andtheworkofprovidersofbothin-the-homeandout-of-homerespitecareisillustrated.
2.2 Methodology
Thisrespiteneedsassessmentsetouttoidentifythelevelofneedforrespitecareforchildrenwith
life-limitingconditionsinallfouradministrativeregionsoftheHealthServiceExecutive,buildingonthe
needsassessmentpreviouslyundertakenintwooftheseregions,HSEDublinMid-LeinsterandHSE
DublinNorth-East(IHF/CSH,2011).
Inordertocompilethisnationalreport,asteeringcommitteewasformedtooverseetheprojectand
guidetheprojectteam(seeAppendix1).ToensurethattheinformationcollectedfromHSESouthand
HSE West was reflective of the range of locally-based services, a separate support group was
establishedineachofthesetworegions(Appendix2).
TheoriginalrespiteneedsassessmentwasundertakenbetweenSeptember2009andMarch2010;
theworkontheHSESouthandHSEWestregionswasundertakenduringAugust-November2012.
Thereportfindingsthereforereflectthesetimeperiodsexceptwherespecified.
Theoriginalneedsassessmentwasupdatedasfaraspossible–servicesinDublinMid-Leinsterand
DublinNorth-Eastthathadprovidedinformationin2010weregiventheopportunitytoupdatetheir
figures–andtheinformationwasincorporatedwiththenewdataonHSESouthandWest.
2.3 National overview of child population
Thisprojectsetouttoidentifythelevelofneedforrespitecareforchildrenwithlife-limitingconditions
inallfouradministrativeregionsoftheHSE.Usingdatafromthe2006census,thechildpopulation
percountywascalculated.(Afurthercensuswasconductedin2011,butthedatarequiredwasnot
availableatthetimeofcompilingthisreport.)Accordingtothe2006census,atotalof1,036,034
childrenresidedintheRepublicofIreland.ThechildpopulationforeachcountyisshowninTable4.
18
TABLE 4 Child population by county and HSE region (CSO Census, 2006)
County*
Child population
County
Child population
Clare
28,565
Cork
11,6241
Limerick
43,507
Kerry
33,036
NorthTipperary
16,769
Carlow
12,668
Galway
55,306
Kilkenny
22,882
Roscommon
14,503
SouthTipperary
21,162
Mayo
30,969
Waterford
27,009
Sligo
14,610
Wexford
34,851
Leitrim
Donegal
7,133
40,288
HSE West
251,650
HSE South
267,849
DublinNorth
107,970
DublinSouth
153,131
Louth
29,233
Kildare
50,337
Meath
44,621
Laois
18,013
Cavan
17,127
Longford
Monaghan
14,455
Offaly
19,169
Westmeath
21,124
Wicklow
32,425
HSE
Dublin-North East
213,406
HSE
Dublin-Mid Leinster
NATIONAL TOTAL
8,930
303,129
1,036,034
*CountiesDublinandTipperaryaresplitintwobyHSEregionboundaries
2.4 Prevalence of life-limiting conditions in children
Thereiscurrentlyanabsenceofrobustdataregardingthenumberofchildrenlivingwithanddying
fromlife-limitingconditionsinIreland.ThisisnotanexclusivelyIrishissue:severalcountries(including
Ireland) have undertaken work aimed at establishing prevalence rates, but currently there is no
establishedformulaforestimatingthesefigures,andcomparisonbetweencountriesischallenging–
forexample,agecategorisationdiffersbetweencountries,someofwhichcollectdataonthepopulation
aged0-19(UK)andothers0-17(Ireland).Thesub-sectionsbelowdescribefindingsandreviewvarious
reportsonprevalenceratesfromanumberofdifferentcountries,includingIreland.Thesereports
demonstratetherangeofanddifficultyinestimatingprevalenceratesforchildrenwithlife-limiting
conditions,andthereforethechallengesinvolvedinestimatingtheneedforrespiteservices.
19
Prevalence rates – Ireland
Thechildren’spalliativecareneedsassessmentundertakenin2002andpublishedin2005useda
prevalencerateof12childrenwithlife-limitingconditionsper10,000children(aged0-17years),
producingafigureof1,369childrenlivingwithalife-limitingcondition.Thiswasbasedon2002UK
prevalenceratesandwasthought,evenatthetimeofpublicationoftheIrishreportin2005,tobe
anunderestimate.Aprovisowarnedthatforanumberofreasons,includingtheassumptionofa
similarityinprevalencebetweentheUKandIreland,thefiguresmightbehigher.
Prevalence rates – UK
IntheUK,thefirsteditionoftheGuide to the Development of Children’s Palliative Care Services
(ACT,1997),producedbytheAssociationforChildrenwithLife-ThreateningorTerminalConditions
(ACT)andtheRoyalCollegeofPaediatricsandChildHealth,includedanestimatedprevalenceof
10childrenwithlife-limitingconditionsper10,000ofchildpopulation.
ThesecondeditionoftheGuidewasreleasedin2003(ACT,2003).Thisreportestimatedtheannual
mortalityrateforchildrenaged0-19withlife-limitingconditionstobewithintherange1.5to1.9
children per 10,000 of population. ACT further refers to district-based data that indicates the
prevalenceofseverelyillchildrenwithlife-limitingconditionsandinneedofpalliativecaretobeat
least12per10,000ofchildpopulation.Takingarangeoffactorsandstudiesintoaccount,ACT
recommendsthatforthepurposesofplanningfutureservices,aprevalencerangeof12to17per
10,000ofpopulationbeusedasthemeasuretoestimatethenumberofchildrenwithalife-limiting
condition.ACTestimatesthatapproximately50%ofthesechildrenwillneedactivepalliativecare
atanyonetime.Thethirdedition(ACT,2009)alsosuggestsaprevalencerateofchildrenwithlifelimitingconditionsrangingfrom12to17childrenper10,000population.
ACTrecentlymergedwithChildren’sHospices(UK)tobecomeTogether for Short Lives.Following
newresearch,abriefingreportfromthisorganisationgivesafigureof49,000childrenlivingwitha
life-limitingconditionwhomaybenefitfromapalliativecareapproach(TogetherforShortLives,
2012).Thisinformationisbasedonresearch(Fraseretal.,2012)whichnowestimatesthatthe
prevalenceofchildrenwithlife-limitingconditionsmaybeashighas32per10,000,morethan
doubletheearlierACTestimates.
Prevalence rates – Wales
AstudyundertakenbyHaininWales(Hain,2005)toestablishtheincidenceandprevalenceof
childrenneedingpalliativecareexamineddatafromthreedifferentsources:
1. PaediatriciansusingtheWelshPaediatricSurveillanceUnit.
2. ReferralstothespecialistpalliativemedicineservicebasedinCardiff.
3. Thetwoprincipalchildren’shospicesservingWales.
Datapertainingtochildrenreferred/reportedtotheseservicesduringtheperiodJanuary2001to
December2002wasusedtoevaluateserviceprovisionandestimateneed.Duringthestudyperiod
atotalof226childrenwereidentifiedinWales.Allchildrenwerecategorisedaccordingtothefour
ACTcategoriesoutlinedinTable1.
20
AccordingtoHain,thereareanumberofapproachestotestandvalidateestimationsofincidence
and prevalence. Incidence of life-limiting conditions in children is typically determined using
mortalitydata.Haincommentsthatsincebydefinitionallchildrenwithalife-limitingconditionare
likelytodiefromit,incidenceisthesameasorverysimilartomortality.Childhoodmortalityis
currently 1-2 per 10,000. Hain refers to a number of studies that suggest that prevalence is
approximately 10 times that of mortality, and notes that this formula is generally suitable for
applicationasaguidetoservicedevelopmentbutshouldbesubjecttocontinuousreview.
Prevalence rates – New Zealand
Prevalence rates in New Zealand were estimated by Jones et al through a combination of
hospitalisationdataandmortalitydataforallchildrenaged0-17yearsduringtheperiod1996to
1998(Jonesetal.,2002).Caseswereclassifiedaseither‘palliative’or‘notpalliative’.
AccordingtotheNewZealandstudy,outof2,122childhooddeaths,16%wereclassifiedasbeing
‘appropriateforpalliativecare’leadingtoaprevalenceof1.14per10,000childrenperyear.37%
ofdeathswereduetocancer;11%werecardiac;24%werecongenital;and28%wereclassified
as‘other’.Ofallthedeathsrecorded,28%wereofchildrenundertheageofoneyear.
In the same study, a second analysis of deaths in the population 1-17 years old was also
undertaken, comparing prevalence rates for New Zealand with other countries, using the
InternationalClassificationofDiseasecodestodefinelife-limitingconditions(Appendix3).Intotal
28%ofcaseswereclassifiedasrequiringpalliativecare.Asaresult,itwascalculatedthat0.99
childrenper10,000ofpopulationinthe1-17agegrouprequirepalliativecare.Thiscompared
closelywiththeUKrateof1per10,000(atthetimeofstudycompletion).TheNewZealandstudy
foundthat29%ofchildhooddeathsoccurredinhospital,theauthorssuggestingthatthismay
reflectgapsinpalliativecareservicesratherthanapreferenceforcarewithintheacutesetting.
Prevalence rates – Northern Ireland
TheNorthernIrelandChildren’sHospicecompletedanAssessment of Need of Life-limited Children
in Northern Ireland in2000(NorthernIrelandHospiceCare,2000),whentherewereapproximately
500,000childrenlivinginNorthernIreland.Ananalysisofquantitativeandqualitativedatawasused
toreachaprevalencerateof17.2childrenwithlife-limitingconditionsper10,000ofpopulation.
Summary of prevalence rates, Ireland and UK
Table5providesasummaryoftheprevalenceofchildrenwithlife-limitingconditionsinIrelandand
theUK,andalsoseparatelyinWalesandNorthernIreland.Estimatesofprevalenceratesrange
from10per10,000ofchildpopulationin1997(withacaveatthatthisisanunderestimate)tothe
morerecentUKestimateof32per10,000andrising.
21
TABLE 5 Prevalence of children with life-limiting conditions in Ireland and
the UK, per 10,000 of child population
Country
Year
No. children (per 10,000)
Ireland
2005
12
UK
1997
10
2003
12
2009
12-17
2012
32
Wales
2005
10-12
NorthernIreland
2000
17.2
A prevalence rate of 14.5 per 10,000 will be used for the purposes of this study.
2.5 National overview of respite services
InIreland,themajorityofchildrenwithlife-limitingconditionsarecaredforathome,withtheir
parents as their primary carers. Additional supports, including respite, are often provided by
statutoryandvoluntarycareproviders;however,asaresultoftheoverlapbetweenchildrenwith
disabilitiesandthosewithlife-limitingconditions,itisnotpossibletoclearlyseparateandidentify
thefundingandservicesprovidedtochildrenwithlife-limitingconditionsandtheirfamilies.
Theprovisionofrespitecareforchildrenwithlife-limitingconditionsvariesbothbetweenandwithin
HSEregions.OneofthesignificantfindingsofA Palliative Care Needs Assessment for Children
(DoHC/IHF,2005)wasthattheprovisionofservices(includingrespitecare)wasinequitable,varying
accordingtodiagnosisandthelocationofthefamilyhome.
Whiledefiningalife-limitingconditionisnotaseasyassimplyusingadiagnosis,accesstocertain
services, including some respite services, is diagnosis dependent. In Ireland, children with
conditionsinACTCategories3and4(seeTable1)arefrequentlycaredforthroughthedisability
servicesandoftenreceiverespitecarethroughtheseservices.Childrenwithcancer(ACTCategory
1)areunderthecareofspecialistcancerservicesatOurLady’sChildren’sHospitalinCrumlin,and
receivethesupportofanOncologyLiaisonNursewholinksservices,includingrespitecare,forthe
childandfamily.ChildrenwithcancermaybeadmittedtotheOncologyUnitforrespitecare,and
familiesmaybeeligibleforanight-nursingserviceprovidedbytheIrishCancerSociety,although
thisisusuallyrestrictedtocareattheendofliferatherthanrespitecare.AlthoughtheIrishHospice
Foundationprovidesasimilarserviceforfamiliesofchildrenwithlife-limitingconditionsotherthan
cancer,againthemainfocusisonend-of-lifecare,andaccessingrespiteservicesmayprove
particularlychallengingforfamiliesofchildrenwithoutadefinitivediagnosis.
22
Whererespitecareisprovidedtofamiliesofchildrenwithlife-limitingconditionsitfallsintothree
categories:
• In-the-homerespitecare
• Out-of-homerespitecare
• Other.
In-the-homeandout-of-homerespitecarearenotmutuallyexclusiveandareoftencombinedaspart
ofarespitecareplanforachild.
In-the-home respite care
AcrossallfourHSEregions,in-the-homerespiteforchildrenwithlife-limitingconditionsissupported
byacombinationofvoluntaryandstatutoryfunding.Homeisthelocationofchoiceforthecareofa
childwithalife-limitingcondition,especiallywhenadequatesupportsareavailable,andplannedrespite
careinthechild’sownhome isthereforeacommonoption.Careisoftenprovidedbyaregistered
children’snurseorregisteredgeneralnurse,orbyatrainedcareassistant/carer.Theroleofthis
healthcareprofessionalorcareristoundertakethenormaldutiesandtasksrequiredtosupportthe
child,oftenthoseusuallyprovidedbythechild’sfamily.
Out-of-home respite care
Out-of-homerespiteinvolvestheprovisionofsupportstocare-giversinsettingsoutsideofthehome.
Thiscarecanbeprovidedinavarietyofsettings,includingrespitecentres,residentialcarefacilities
andwhereavailable,inachildren’shospice.
Other respite options
Respitecareisalsooccasionallyprovidedwithinacutesettings,whennoothermoresuitablelocation
forrespiteisavailable.
Respite services and disability services
Thereisamarkedoverlapbetweentheneedsofchildrenrequiringpalliativecareandthosewith
disabilitiesandothercomplexcareneeds(UKDH,2008).Notallchildrenwithadisabilityhavealifelimitingconditionrequiringpalliativecare,butforthosewhodo,theneedforrespitedependsonthe
degreeofcomplexityandurgencyattachedtotheircareandonthesupportneedsoftheirfamilies.
Anumberofbothstatutoryandvoluntarycentresproviderespitecareforchildrenwithintellectual
disabilitieswhoalsohavealife-limitingcondition;however,themajorityofthesecentreswouldnot
considertheirservicetobeprovidingrespitecareaspartofpalliativecare.Itisuncertainhowmanyof
the698childrenwhoavailedofrespitecareprovidedbydisabilityservicesin2011alsohadalifelimitingconditionandmayhaverequiredpalliativecareservices.
TheDisabilityAct2005(GovernmentofIreland,2005)includesprovisionfortheestablishmentofan
‘AssessmentofNeed’processthatfocusesondisabilityandeducationneeds(SeeAppendix5).This
processaimstoensurethatassessedneedsarematchedwithappropriateserviceswhereavailable.
In2007,thisActwasextendedtoincludechildrenundertheageoffive.Althoughthishasassisted
familiestoaccessarangeofservices,includingrespitecare,inaccordancewiththeirspecificneeds,
itdoesnotautomaticallyentitlethemtotheseservices.
23
Providers of respite care for children with life-limiting conditions and their families
Someprovidersofrespitecareforchildrenwithlife-limitingconditionsarenationalorganisations,
suchastheJack&JillFoundation,LauraLynn,Ireland’sChildren’sHospiceandtheBrothersof
Charity, while others, such as COPE (Cork), are locally-based. The HSE fulfils a limited
coordinationanddirect-deliveryroleintheprovisionofrespitecaretosomechildrenwithlifelimitingconditions,andalsoprovidesrespitefundingthroughHSEServiceArrangements.
Both of the Irish national reports on children’s palliative care – A Palliative Care Needs
Assessment for Children (DoHC/IHF,2005)andPalliative Care for Children with Life-limiting
Conditions: A National Policy (DoHC,2010)–foundthattherewasadearthofinformationon
theprovisionofrespitecare,andasaresult,itisunclearwhereorhowservicesareaccessed
orprovided.
Whererespiteservicesare provided,themostcommonrouteofreferralisfromwithintheacute
hospitalsectoratthetimeofdiagnosis,whichcanbeasearlyasbirth.Referralsareusually
fromclinicianscaringforthechildandfamily,andideally,theneedforrespitecareshouldbe
assessedandaprogrammeofrespitetailoredtomeettheirindividualneeds.
Where available, respite care can be provided in a variety of locations, both in the home
(includingovernightrespitecareifneeded),andawayfromthehome.However,appropriate
respiteservicesarenotavailabletoallchildrenwithlife-limitingconditions,andaccessdepends
onarangeofcriteriaincludingthechild’sage,diagnosisandprognosis,andwherethechild
andfamilylive.
Examples of national organisations providing respite care
The Jack & Jill Foundation
TheJack&JillFoundationisavoluntaryorganisationprovidingearly-interventionhomerespite
to families with children who have severe neurological developmental delay and palliative
conditionsrequiringextensivemedicalandnursingcare.TheFoundationprovidesdirectfunding
tothesefamiliestoenablethemtopurchasein-the-homerespitecare.
FamiliesofchildrenmeetingtheabovecriteriaareallocatedaLiaisonNursewhosupportsthe
familiesinanadvisorycapacity,reviewstheirrespiterequirementsonanongoingbasisand
provides‘hands-on’carewhennecessary.TheJack&JillFoundationhasplayedasignificant
roleintheprovisionofrespitecaretofamiliesinIreland,however,servicesarerestrictedatpresent
tochildrenuptotheageoffour.
24
GW LM MO RN
25 2 14 6
SO CW D KE
6
8 101 18
KK
9
Connaught
LS
13
LD
5
31
LH MH OY WH WX WW CE
11 20 6 10 31 9
8
Leinster
C
49
Co.Wexford
Co.Wicklow
Donegal
Monaghan
49
Co.Westmeath
5
Cavan
10
Co.Waterford
15
Waterford
20
Co.Tipperary
25
Tipperary
30
Co.Sligo
Respite provided 2011
Limerick
Figure3 Respite provided by Jack & Jill Foundation, 2011, by region
Co.Roscommon
* Data for 2012 is January to July only
Kerry
Co.Offaly
Co.Monaghan
Co.Meath
Co.Mayo
Co.Louth
Co.Longford
Co.Limerick
Co.Leitrim
Co.Laois
Co.Kilkenny
Co.Kildare
Co.Kerry
Co.Galway
Co.Dublin
Co.Donegal
Co.Cork
Co.Clare
Co.Cavan
Co.Carlow
30
Cork
Clare
Wicklow
101
Wexford
Westmeath
Offaly
Meath
Louth
Longford
Laois
Kilkenny
Kildare
0
Dublin
Carlow
Sligo
Roscommon
Mayo
Leitrim
Galway
Figure2 Jack & Jill Foundation activity data, 2008-2012
Referrals 2008 to 2012
35
2008 2009 2010
2011 2012*
25
20
15
10
5
0
Munster
KY
14
LK
18
Ulster
TN WD CN
11 23 10
DL MN
5
7
25
LauraLynn, Ireland’s Children’s Hospice
TheChildren’sSunshineHomehasbeeninexistencesince1925andhasrecentlybeenrenamed
LauraLynn, Ireland’s Children’s Hospice. Thisincorporatesboththeservicespreviouslyoperated
astheChildren’sSunshineHomeandanewpurpose-builthospiceunitopenedinSeptember
2011.Asthefirstchildren’shospiceintheRepublicofIreland,LauraLynnprovidesthefollowing
servicestochildrenandfamilieswithlife-limitingandlife-threateningconditions:
•
•
•
•
transitionalcarefrommaternityandacutechildren’shospitals
homesupport
respiteandcrisiscare
end-of-lifecare.
Priorto2011,serviceswereprovidedpredominantlytofamiliesintheHSEDublinMid-Leinster
region;however,Figure4belowtestifiestothefactthatLauraLynncurrentlyprovidesservicesto
familiesfromallfourHSEregions,whileFigure5reflectsasteadyincreaseinthenumberof
referrals.
Figure4 LauraLynn, Ireland’s Children’s Hospice: Families cared for in 2012
Families cared for in 2012
90
80
70
60
50
40
30
20
10
Donegal
LK
1
DL MN
1
2
Munster
TN
2
Monaghan
Limerick
Tipperary
Kerry
Clare
Laois
KY WD CE
2
2
1
Leinster
Waterford
Offaly
LS
2
Carlow
LD WX WW MH LH CW OY
1
6
8 10 6
1
1
Louth
KE
11
Meath
Longford
GW RN MO
1
1
2
Wicklow
Kildare
D
86
Connaught
Wexford
Dublin
Mayo
Roscommon
Galway
0
Ulster
Total = 147
26
Figure5 Number of children using LauraLynn services, 2008-2012
Number of children using the services of LauraLynn,
Ireland’s Children’s Hospice, 2008-2012
160
140
120
100
80
60
40
20
0
2008
Year
No. Children
2009
2010
2011
2012
2008
2009
2010
2011
2012
62
72
87
103
147
LauraLynnworksinpartnershipwiththeHSEandotherrelevantvoluntaryagencies.Itincorporates
amultidisciplinaryservicethatincludesaMedicalDirector,ConsultantPaediatrician,anursing
team,arangeofalliedhealthprofessionalsandsupportservices.
Astrategicplan,inlinewithnationalpolicy,hasbeendevelopedbyLauraLynnfor2012-2017.Inorder
toprovidehigh-qualitychildandfamily-centredcareLauraLynnrecognisestheessentialroleof
educationandresearchandiscommittedtostaffdevelopment.Servicesaredevelopingwiththeaim
ofprovidingresponsivefamily-centredcaretochildrenwithlife-limitingconditionsandtheirfamilies.
Examples of local respite services in each HSE area
Respiteservicestochildrenwithlife-limitingconditionsandtheirfamiliesvarywithinandbetween
HSEregions.Servicesareavailabletosomechildrenandtheirfamilies,butaccessingthemcanbe
challengingandoftendependsondiagnosisandgeographicallocation.Establishingaccuratedata
oncurrentservicelevelsandlocationofcareandidentifyingthegapsinlocalserviceprovisionhas
provedverychallengingfortheprojectteam.Asnotedpreviously,becauseoftheoverlapbetween
therespiteneedsofchildrenwithdisabilitiesandothercomplexcareneedsandthoserequiring
palliativecare,someserviceprovidersdonotidentifythemselvesasprovidingrespitecareto
childrenwithlife-limitingconditions.Identifyingprovidersofrespitecareforthispatientpopulation
hasthereforebeendifficult.Thissectionpresentsexamplesofsomeoftheservicesprovidedin
eachofthefourHSEareas.
27
HSE Dublin Mid-Leinster and HSE Dublin North-East
WithintheDublinMid-LeinsterandDublinNorth-Eastcatchmentareas,therearecurrentlytwo
centresspecificallyprovidingout-of-homerespitetochildrenwithlife-limitingconditions,both
locatedinDublin:LauraLynn,Ireland’sChildren’sHospiceinLeopardstown(describedabove)and
SuzanneHouseinTallaght.
Suzanne House
SuzanneHouse,partofSt.JohnofGodCommunityServices,providesdaycare,supportanda
respiteserviceforchildrenwhohaveaterminalillnessorwhoaremedicallyfragile.Theservicehas
atotalofthreebedsavailableforplannedrespiteandonebedforemergencysituationssuchas
end-of-lifecare.
TABLE 6 Suzanne House respite activity data, 2011
No.respitenights
No.childrensupported
No.respitedays
No.childrensupported
177
10
319
12
HSE South and HSE West – Overview
TheprojectteamheldmeetingswithkeystakeholdersinbothHSESouthandHSEWest(Appendix
2).ThesetwoHSEregionshavetheirownuniqueserviceswhichcurrentlycaterforthispatient
population.Keystakeholderswereaskedtoprovideanyinformationavailableonrespiteprovision
forchildrenwithlife-limitingconditionsandtheirfamiliesintheirarea.
Whileeveryeffortwasmadetoensurethatasmuchinformationaspossiblewasmadeavailable
totheprojectteam,theinformationacquiredinnowayrepresentsthetotalnumberofhours/
amountoffundingbeingprovidedbytheHSEorvariouspartnerstosupporttherespiteneedsof
childrenwithlife-limitingillnessandtheirfamilies.Thissupportisoftendrawnfromothercommunity
fundingstreamsandreleasedtofamilieswhenacrisisoccurs.Therespondentstotheresearch
notedthatthis‘crisis’fundingcancoverasubstantialperiodoftime,mayhaveirregularreview
periodsandisnotsupportedbyastandardisednationalassessmentprocess.Thedataprovided
foreachofthetworegionsissummarisedseparatelybelow.
28
HSE South
IntheHSESouthregionthereareseveralstatutoryandvoluntaryorganisationsthatproviderespite
servicestochildrenwithlife-limitingconditionsandtheirfamilies.Someexamplesaregivenbelow.
St Joseph’s Foundation, Charleville, Cork
St Joseph’s provides centre-based day and overnight respite to children from South County
LimerickandNorthCorkwhohaveaphysical/sensorydisability,intellectualdisabilityandautism.
Sevenchildrenwithlife-limitingconditionsavailedofservicesin2011
The COPE Foundation
COPEFoundationprovidesacomprehensiverangeofservicestopeoplewithintellectualdisability
and/orautismthroughanetworkofcommunity-basedsupportsatover65locationsinCorkcity
andcounty.Thesesupportsincludeearlyintervention;education;training;leisure,sportsandarts
activities;andsupportedemployment,aswellasresidentialsupports.Fivechildrenavailedofinhomerespiteprovision,withatotalof340hours,in2010/2011
TABLE 7 COPE Foundation activity profile, 2011
No.respitenights
84
No.childrensupported
4
No.respitedays
84
No.childrensupported
Hospitaladmissionsupport
4
16hrsperweek
St Rita’s (Brothers of Charity Services), South Tipperary
StRita’soffersrespitebreakstochildrenwithintellectualdisabilitiesfromtheSouthTipperaryarea,
includingthosewhohavelife-limitingconditions.Thispart-timeserviceincludesmid-weekand
weekendplannedbreaks.StRita’salsoorganisesin-the-homerespitewhichoffersthefamilya
flexibleuseofhours.TheBrothersofCharityServicesarecurrentlyexaminingthefeasibilityof
providingalternativerespiteoptionswithinthecurrentagreedallocation.
In-the-home respite services
In-the-homerespiteservicesareprovidedinallareasoftheHSESouthregionbyacombinationof
voluntaryorganisationsandtheHSE,butaredependentuponassessedneedandfunding.
29
HSE West
San Joseph House (Daughters of Charity), Limerick
SanJosephHouseisafive-beddedhousestaffedbynursesprovidingovernightrespitecareto
childrenaged0-6withadisabilityfromtheformerHSEMid-Westregion,i.e.Clare,Limerickand
NorthTipperary.Italsoprovidesovernightrespitetochildrenaged6-18withadisabilityfromthe
EastLimerick/NorthTipperaryregion.Thisservicedoesnotspecificallyprovideservicestochildren
withlife-limitingconditions.SanJosephcurrentlyprovidesaserviceto36childrenthrougharange
ofdayandovernightrespite.
Claddagh House (Daughters of Charity), Roscrea, Co. Tipperary
CladdaghHouseisathree-beddedhousestaffedbynursesandcarestaff.Ittakeschildrenwho
attendStAnne’sSpecialSchoolinRoscreawithmoderate,severe/profoundlearningdisabilityand
autism.ItalsoprovidesrespitetothechildrenintheEastLimerick/NorthTipperarycatchmentarea
attendingtheearlyinterventionandschoolagedisabilityteams.Therearecurrently15children
attendingfordayandovernightrespite,althoughonlyonechildiscurrentlydefinedbystaffaslifelimited.
Donegal
AnexampleofaHSEregionhavinguniqueservicesisDonegal.Thefollowingareexamplesofthe
respiteservicesprovided:
• Playbreaks(dayoutingsforchildren,e.g.bowling,cinema,concerts,etc.)
• Teenbreaks(overnighttripstoconcerts,footballmatches,3-4nightbreaksinoneof
therespitehouses)
• Useofrespitehousesforfamilybreaks(currentlythereare59familiesonthebooks)
• TherearefourrespitehousesinDonegalwithapproximatelysixbedsineachhouse.
In-the-home respite services
In-the-homerespiteservicesareprovidedinallareasoftheHSEWestregionthroughacombination
ofvoluntaryorganisationsandtheHSE,butthesearedependentonassessedneed,localprotocol
andfunding.Someexamplesofin-the-homeservicesprovidedtochildrenintheCo.Clarearea–
manyofwhommayhavealife-limitingcondition–arepresentedbelow.
Co. Clare area – In-home respite
Numberofrespitenights
Numberofchildrensupported
Numberofrespitedays
Numberofchildrensupported
30
Enable Ireland
Brothers of Charity
125
156
8
8
205
17
8
3
Other respite options
Respitecareisalsooccasionallyprovidedwithinacutesettings,wherenoothermoresuitable
locationforrespiteisavailable.Whilemostadultspecialistpalliativecareteamswillextendsupport
tofamiliesofchildrenwithlife-limitingconditions,thisstudyfoundtheydonothaveaspecificrole
intheprovisionofrespitecareforchildren.
2.6 Conclusion
TheprovisionofrespitecareservicesvariesbothwithinandbetweenHSEadministrativeregions.
Limitedin-the-homeandout-of-homeservicesareprovided,oftensupportedbyacombination
ofvoluntaryandstatutoryfunding.Someservicesarediagnosisdependentoragedependent
(e.g.confinedtobabies/veryyoungchildren).Familieswhosechilddoesnothaveadefinitive
diagnosismayfindaccesstorespiteparticularlychallenging.Itislikelythatthevoluntarysector
willcontinuetobekeyserviceproviders,withsignificantfundingprovidedthroughHSEService
Arrangements.
Thisreportindicatesthatthereisadearthofinformationregardingwhereandbywhomrespite
careisprovided.Examplesofcentresknowntoproviderespiteforsomechildrenwithlife-limiting
conditionsarepresented.Furtherworkisneeded,however,toestablishthenumberofservices
providingrespitecare,thequantumofservicebeingprovidedandthenumberoffamiliesaccessing
thiscare.Thequalityofthecarebeingprovidedalsoneedstobeassessed.
31
Ó SECTION 3
Future development of services to meet the
respite needs of children with life-limiting
conditions
3.1 Introduction
Thissectionseeksbothtoquantifyprojectedneedandtoestimatethecostofprovidingrespite
services in each of the four HSE administrative regions up to 2021. Using child population
projectionsforIreland,CSOdata,andnationalandinternationalapproachestoestimatingthe
prevalenceofchildrenwithlife-limitingconditions,asdescribedinSection2,futureserviceneed
isestimated.
3.2 Population projections
Inordertoplananddeveloprespiteservicesforchildrenwithlife-limitingconditions,itisimportant
to have an estimation of the future child population of Ireland. The CSO’s regional population
projectionssuggestthatthechildpopulationofeachHSEregionissettoriseintheyearsuptoand
including2021(Table8).InHSEDublinNorth-East,thisisprojectedtoincreasebyapproximately
15%;inHSEDublinMid-Leinsterby16%;inHSEWestby11%andinHSESouthby10%.
3.3 Quantifying the need for respite care
Inordertoprovidearesponsiveandappropriaterespiteservicetomeetfutureneed,information
isrequiredonboththepotentialnumberoffamilieslikelytorequirerespitecareandonwherethat
careshouldbeprovided,i.e.withinthehomeoroutsidethehome.Inordertoestimatethesefigures,
thefollowingdata/datasourceshavebeenused:ananalysisofchilddeathdatafromtheCSO;
nationalandinternationalprevalencerates;andthefindingsoftheIrishchildren’spalliativecare
needsassessment(DoHC/IHF,2005)
32
TABLE 8 Child population projections, by HSE administrative region and
constituent counties (CSO, 2006)
HSE region & counties*
2006
2011
2016
2021
HSE West
Clare
Limerick
NorthTipperary
Galway
Roscommon
Mayo
Sligo
Leitrim
Donegal
Total
28,565
43,507
16,769
55,306
14,503
30,969
14,610
7,133
40,288
251,650
30,278
46,117
17,775
59,177
15,518
33,136
15,632
7,632
43,108
268,373
32,035
48,792
18,806
64,503
16,914
36,119
16,258
7,937
44,832
286,196
32,835
50,011
19,276
69,018
18,098
38,647
16,583
8,096
45,729
298,293
HSE South
Cork
Kerry
Carlow
Kilkenny
SouthTipperary
Waterford
Wexford
Total
11,6241
33,036
12,668
22,882
21,162
27,009
34,851
267,849
125,540
35,678
13,744
24,826
22,960
29,304
37,813
289,865
134,327
38,176
14,638
26,444
24,453
31,209
40,271
309,518
139029
39512
15004
27101
25064
31989
41277
318,976
HSE Dublin North-East
NorthCountyDublin
Louth
Meath
Cavan
Monaghan
Total
107,970
29,233
44,621
17,127
14,455
213,406
117,903
30,841
51,493
18,069
15,250
233,556
129,104
31,982
57,826
18,738
15,814
253,464
138,270
32,654
62,163
19,131
16,146
268,365
HSE Dublin Mid-Leinster
SouthCountyDublin
Kildare
Laois
Longford
Offaly
Westmeath
Wicklow
Total
153,131
50,337
18,013
8,930
19,169
21,124
32,425
303,129
167,219
58,089
19,814
9,823
21,086
23,236
37,418
336,686
183,105
65,234
21,063
10,442
22,414
24,700
42,021
368,979
196,105
70,126
21,315
10,567
22,683
24,997
45,172
390,967
1,036,034
1,120,528
1,218,157
1,276,600
NATIONAL TOTAL
*CountiesDublinandTipperaryaresplitintwobyHSEregionboundaries
33
CSO data on childhood deaths
AnanalysisofCSOdatarelatingtochildhooddeaths(0-17yrs)registeredinIrelandduring2010
wascompleted.ThedeathswerecategorisedusingtheInternationalClassificationofDisease
codesidentifiedbyACTtodefinelife-limitingconditions(Appendix3).Diseasesinanyofthefour
ACTcategoriesoflife-limitingconditions(Table1)wereincluded.Uponcompletionofthisexercise,
atotalof348childrenwereidentifiedashavingdiedfromalife-limitingcondition(CSO,2012).
3.4 Location of respite care (home/outside of home)
InlinewithIrishnationalpolicyonpalliativecareforchildrenwithlife-limitingconditions,thisrespite
needsassessmenthasbeencompletedonthebasisthathomeisthesettingofchoiceforrespite
care.However,althoughthisclearpreferenceisacceptedasbestinternationalpractice,achild’s
home is not always the most suitable location for care, and therefore an alternative, or a
combinationofrespitesettings,mayberequired.
Basedonbothnationalandinternationalfindingsandontheclinicalexperienceofitsmembers,
theprojectadvisorygroup(seeAppendix6)fortheHSEDublinMid-Leinster/DublinNorth-East
respiteneedsassessment(IHF/CSH,2011),establisheda70:30splitbetweenin-the-homeand
out-of-homerespiteasaguidelineforquantifyingfutureserviceneeds.Thisguidelinehasbeen
adoptedforthepresentneedsassessmentalso.Allrespitecareshouldbeflexible,person-centred
andaimedatmeetingtheindividualneedsofthechildandfamily.
3.5 Project assumptions
Inthisrespiteneedsassessment,andintheabsenceofaccurateandcontemporaneousdata,
estimatesoftheprevalenceoflife-limitingconditionsinchildrenhavebeenused,followingthe
exampleoftheHSEDublinMid-Leinster/DublinNorth-Eastneedsassessment(IHF/CSH,2011).
Thesearebasedonbothnationalandinternationalexperience,andaimtoprovidepolicymakers
andserviceplannerswithaguidetofutureneedforrespiteservicesforchildrenwithlife-limiting
conditions.
Inordertocalculateprojectedrespiteneed,thefollowingassumptionsadoptedfortheprevious
studywillserveasthebasisuponwhichallcalculationsandprojectionshavebeenarrivedatin
thisrespiteneedsassessmentalso:
• A prevalence rate of 14.5 children with life-limiting conditions per 10,000 of child
population.Thiswasthemid-pointoftherange,12-17per10,000,asdiscussedin
Section2.1
• Anumberofstudiessuggestthatprevalenceisapproximately10timesthatofmortality;
the application of this figure provides a guide to the level of service development
needed.Thishasbeenappliedforthepurposesofthisrespiteneedsassessment.
1
34
Itisclear,however,fromtherecentworkofFraseretal.(2012)thatthisislikelytobeanunderestimate
• TheACTrecommendationthatapproximately50%ofallchildrenwithalife-limiting
condition will need active palliative care at any one time is also accepted as
applicabletotheIrishenvironment.
• Allchildrenclassifiedashavingan‘activepalliativecarerequirement’willbenefit
fromandwillrequiresomeformofrespitecare,althoughsomechildrenwithlifelimitingconditionsaccessrespitecarethroughservicesotherthanpalliativecare,
inparticular,throughintellectualdisabilityservices.
• Projections of respite care demand to 2021 assume a constant rate of use of
palliative respite care during the period 2010 to 2021. As a result, population
changeswillserveasthesolecontributingfactortovariancesindemandduringthe
periodunderreview.
Theseassumptionsserveasthebasisuponwhichallcalculationsandprojectionshavebeenmade.
3.6 Projected future need for respite services
Table 9 shows the projected need for respite services across Ireland up to 2021. The child
populationforeachcounty,alongwiththeestimatedoverallnumberofchildrenwithlife-limiting
conditions,havebeenusedtoestimatethenumberofchildrenwithlife-limitingconditionswho
mayrequirerespiteservices.
Applyingthemid-pointprevalencerateof14.5childrenper10,000tothetotalchildpopulationof
allHSEregionsgivesatotalof1,503childrenlivingwithalife-limitingcondition.Asnotedabove,
ACTpointoutthatapproximately50%ofallchildrenwithsuchaconditionwillhavean‘active
palliativecarerequirement’atanygiventime.Thishasbeenusedtoestimatehowmanywillneed
respitecareatanygiventime.Futureprojectionsupto2021arecalculatedinthisway,butare
coupledwithCSOprojectionsofchildpopulationchanges.Onthisbasis,itisassumedthat925
childrenwillrequiresomeformofrespitecarein2021.
35
TABLE 9 Projected need for respite services, 2011-2021, by HSE
administrative region and constituent counties
Children with active
palliative care needs
HSE region &
constituent counties*
Child
pop.
(2006
Census)
HSE West
Clare
Limerick
NorthTipperary
Galway
Roscommon
Mayo
Sligo
Leitrim
Donegal
Total
28,565
43,507
16,769
55,306
14,503
30,969
14,610
7,133
40,288
251,650
41
63
24
80
21
45
21
10
58
365
22
33
13
43
11
24
11
6
31
195
23
35
14
47
12
26
12
6
33
207
24
36
14
50
13
28
13
6
33
216
HSE South
Cork
Kerry
Carlow
Kilkenny
SouthTipperary
Waterford
Wexford
Total
116,241
33,036
12,668
22,882
21,162
27,009
34,851
267,849
169
48
18
33
31
39
51
388
91
26
10
18
17
21
27
210
97
28
11
19
18
23
29
224
101
29
11
20
18
23
30
231
HSE Dublin North-East
DublinNorth
Louth
Meath
Cavan
Monaghan
Total
107,970
29,233
44,621
17,127
14,455
213,406
157
42
65
25
21
310
78
21
32
12
10
168
94
23
42
14
11
184
100
24
45
14
12
195
HSE Dublin Mid-Leinster
DublinSouth
Kildare
Laois
Longford
Offaly
Westmeath
Wicklow
Total
153,131
50,337
18,013
8,930
19,169
21,124
32,425
303,129
222
73
26
13
28
31
47
440
111
36
13
6
14
15
24
243
133
47
15
8
16
18
30
268
142
51
15
8
16
18
33
283
1,036,034
1,503
816
883
925
NATIONAL TOTAL
Children
with lifelimiting
conditions
2011
2016
*CountiesDublinandTipperaryaresplitintwobyHSEregionboundaries
36
2021
Identifyingthegapbetweensupplyanddemandinrelationtorespiteserviceshasbeenchallenging,
ascomprehensiveinformationregardingthelocationandtypeofrespitecarecurrentlybeingprovided
isnotavailable.Therefore,thisrespiteneedsassessmentfocusesonprojectingthetotal needfor
respiteservicesfortheperiodupto2021,includingthosewhicharealreadyinplace.Whererespite
servicesarealreadyprovided(bydisabilityservices,forexample)itisenvisagedthatthiswillcontinue.
Figure6providesagraphicillustrationoftheprojectedyear-by-yeargrowthinthenumbersof
childrenwithlife-limitingconditionswhoarelikelytorequireactivepalliativecareovertheperiod
2011-2021ineachHSEregion.
Figure6 Projected number of children with active palliative care requirement, 2011-2021, by HSE region
Children, by region
290
No. of Children
270
250
230
210
190
DNE
DML
WEST
SOUTH
170
150
DNE
DML
WEST
SOUTH
2011
168
243
195
210
2012
171
247
197
213
2013
174
252
200
216
2014
177
256
202
218
2015
180
260
205
221
2016
184
267
207
224
2017
186
270
209
225
2018
189
274
211
227
2019
191
278
212
228
2020
194
281
214
230
2021
195
283
216
231
3.7 Financial projections
HSE funding for respite services for children with life-limiting conditions is currently provided
through a range of different HSE services, e.g. disability services, palliative care, community
services,etc.TheHSEalsoprovidesrespitefundingtoexternalserviceproviders(e.g.Jack&Jill
Foundation,BrothersofCharity,etc.)Becauseofthecomplexitiesinvolvedintheprovisionof
respitefunding,ithasnotbeenpossibletoquantifythepreciseextentofthisallocationinthe
processofundertakingthisneedsassessment.Thefinancialprojectionswhichfollowarebased
ondeliveringarespiteserviceforallchildrenidentifiedintheprevioussection,anddo not take
account of existing respite budgets.Theypresenttheannualprojectedcostofprovidingarangeof
respiteservicesacrossthetworespitecaresettings–withinthehomeandoutsideofthehome–
andareunderpinnedbyanumberofassumptionsaslistedonpage38.
37
3.8 Categorising respite care
AsindicatedinSection1,forthepurposesofthisneedsassessment,in-the-homeandout-ofhomerespitecarehavebeenfurthercategorisedasfollows:
In-the-home respite care
Ó
Category 1: Theprovisionofin-the-homecareforachildwithalife-limitingcondition
in order to enable parents and/or other regular carers to tend to other
requirements/activities.Thistypeofrespiteistypicallyprovidedbyatrained/accredited
healthcareassistantorafamilymember/friend.
Ó
Category 2: The provision of care by an appropriately qualified and experienced
registerednursewiththerequisiteskillstocareforachildwithalife-limitingcondition
inthechild’sownhome.
Ó
Category 3: Theprovisionofanextendedrangeofrespiteservicestoachildwitha
life-limitingcondition.Careisdeliveredbyanappropriatelyqualifiedandexperienced
registerednursewithspecificexpertise/qualificationsinpalliativecareandpaediatrics.
Out-of-home respite care
Ó
Category 1: Theprovisionofsupporttoachildwithalife-limitingconditionata
non-specialistunitbyappropriatelytrainedhealthcarestaff.
Ó
Category 2: Theprovisionofrespitecaretoachildwithinaspecialistunit.This
involvestheprovisionofcare/supporttochildrenbyappropriatelytrainedhealthcare
staff,withaccesstospecialistcareasnecessary.
Ó
Category 3: Theprovisionofanextendedrangeofrespiteservicestochildrenwith
life-limitingconditions.Careisdeliveredbyaregisterednursewithspecificexpertise
/qualificationsinpalliativecareandpaediatricswithinaspecialistunit.
3.9 Assumptions underpinning the calculated costs
Theassumptionsunderpinningthecalculatedcostsofdeliveringarangeofrespiteservicesacross
thetwosettingsaretakenfromtheHSEDublinMid-Leinster/DublinNorthEastneedsassessment
(IHF/CSH,2011).Thesewerebasedonnationalandinternationalreportsandtherecommendation
ofamulti-professionalsteeringcommittee.Theassumptionsare:
38
• Allcostsarecalculatedonthebasisofanaverageweeklyallocationofuptoeight
hoursofrespitecareperchild(1.44dayspermonth).
• Totalrespiteprovisionhasbeenallocatedonthebasisofa70:30ratiobetweeninthe-homeandout-of-homerespitecare.
The allocation of in-the-home respite provision is further sub-divided as follows:
Ó
Ó
Ó
Category1:48.25%
Category2:44.25%
Category3:7.5%.
The allocation of out-of-home respite provision is further sub-divided as follows:
Ó
Ó
Ó
Category1:60%
Category2:32.50%
Category3:7.5%
• The allocations assigned to each sub-category of in-the-home care above are
approximatelybasedoncurrentpracticeintheJack&JillFoundation,withspecific
allowancesincorporatedbasedontheplannedintroductionofspecialistrespitecare.
• Carer-deliveredandnurse-deliveredin-the-homerespitecostshavebeenestimated
onthebasisofanaveragehourlyrate,asperHSEconsolidatedsalaryscales.
• Costsassociatedwithspecialistin-the-homerespitewerecalculatedonthebasisof
the annual salary (plus expenses/PRSI/pension entitlements) of a Specialist
CommunityPalliativeCareNurse.
• Category1out-of-homerespitecostsarebasedontheaveragehourlyrateforthe
provisionofrespitecarebyaserviceproviderdeliveringrespitecareforchildrenwith
life-limitingconditions.
• Category2out-of-homerespitecostsarebasedontheaveragehourlyrateforgeneral
respiteatLauraLynn,Ireland’sChildren’sHospice.
• Category3out-of-homerespitecostsarebasedontheprojectedcostsofspecialist
carewithinLauraLynn,Ireland’sChildren’sHospice.
3.10 Cost of respite options
Tables10-13provideabreakdownoftheprojectedannualcostofdeliveringrespitecaretochildren
with life-limiting conditions, both within and outside of the home, in each of the four HSE
administrativeregionsfortheperiod2011-2021.
Thecalculationsforin-the-homerespitearebasedontheHSE’smid-pointhourlypayratesfor
threecategoriesofstaff:(a)healthcareassistants–€19;(b)registerednurses–€24;and(c)Clinical
NurseSpecialists(CNS)–€37.
39
TABLE 10 Projected cost (€) of respite care, 2011-2021 – HSE DUBLIN MID-LEINSTER
In-the-home respite (70% of total hours)
Out-of-home respite (30% of total hours)*
Year
Delivered
by
healthcare
assistant/
carer
(Cat. 1)
Delivered
by
registered
nurse
(Cat. 2)
Specialist
respite,
delivered
by CNS
(Cat.3)
Total €
General
(Cat. 1)
General
plus
(Cat. 2)
Specialist
(Cat. 3)
Total €
2011
2012
2013
2014
2015
2016
2017
2018
2019
2020
2021
648,707
662,055
675,403
688,751
702,098
715,446
723,455
731,464
739,473
747,481
755,490
751,488
766,951
782,414
797,876
813,339
828,802
838,079
847,357
856,635
865,912
875,190
196,363
200,404
204,444
208,485
212,525
216,565
218,990
221,414
223,838
226,262
228,687
1,596,559
1,629,410
1,662,261
1,695,112
1,727,963
1,760,814
1,780,524
1,800,235
1,819,945
1,839,656
1,859,367
345,721
352,835
359,948
367,062
374,175
381,289
385,557
389,825
394,093
398,362
402,630
236,546
241,413
246,280
251,148
256,015
260,882
263,802
266,723
269,643
272,563
275,484
84,156
85,887
87,619
89,351
91,082
92,814
93,853
94,892
95,931
96,970
98,009
666,423
680,135
693,847
707,560
721,272
734,985
743,212
751,440
759,667
767,894
776,122
Overall
Total €
2,262,981
2,309,545
2,356,108
2,402,671
2,449,235
2,495,798
2,523,736
2,551,674
2,579,612
2,607,550
2,635,488
TABLE 11 Projected cost (€) of respite care. 2011-2021 – HSE DUBLIN NORTH-EAST
In-the-home respite (70% of total hours)
Out-of-home respite (30% of total hours)*
Year
Delivered
by
healthcare
assistant/
carer
(Cat. 1)
Delivered
by
registered
nurse
(Cat. 2)
Specialist
respite,
delivered
by CNS
(Cat.3)
Total €
General
(Cat. 1)
General
plus
(Cat. 2)
Specialist
(Cat. 3)
Total €
2011
2012
2013
2014
2015
2016
2017
2018
2019
2020
2021
448,489
456,497
464,506
472,515
480,524
491,202
496,541
504,550
509,889
517,898
520,567
519,547
528,825
538,103
547,380
556,658
569,028
575,213
584,491
590,676
599,954
603,046
135,757
138,182
140,606
143,030
145,454
148,687
150,303
152,727
154,343
156,768
157,576
1,103,794
1,123,504
1,143,215
1,162,925
1,182,636
1,208,917
1,222,057
1,241,768
1,254,908
1,274,619
1,281,189
239,017
243,285
247,553
251,821
256,090
261,780
264,626
268,894
271,740
276,008
277,430
163,538
166,458
169,379
172,299
175,219
179,113
181,060
183,980
185,927
188,847
189,821
58,182
59,221
60,260
61,299
62,338
63,723
64,416
65,454
66,147
67,186
67,532
460,737
468,964
477,192
485,419
493,646
504,616
510,101
518,329
523,814
532,041
534,784
Overall
Total €
1,564,530
1,592,468
1,620,406
1,648,344
1,676,282
1,713,533
1,732,158
1,760,097
1,778,722
1,806,660
1,815,973
*Out-of-home respite costs do not include overheads, e.g. water, light, heat, cleaning, catering, etc., nor administration or management costs.
40
TABLE 12 Projected cost (€) of respite care, 2011-2021 – HSE WEST
In-the-home respite (70% of total hours)
Out-of-home respite (30% of total hours)*
Year
Delivered
by
healthcare
assistant/
carer
(Cat. 1)
Delivered
by
registered
nurse
(Cat. 2)
Specialist
respite,
delivered
by CNS
(Cat.3)
Total €
General
(Cat. 1)
General
plus
(Cat. 2)
Specialist
(Cat. 3)
Total €
2011
2012
2013
2014
2015
2016
2017
2018
2019
2020
2021
520,567
525,906
533,915
539,254
547,263
552,602
557,941
563,281
565,950
571,289
576,628
603,046
609,231
618,509
624,694
633,972
640,157
646,342
652,527
655,619
661,804
667,990
157,576
159,192
161,616
163,232
165,656
167,273
168,889
170,505
171,313
172,929
174,545
1,281,189
1,294,329
1,314,040
1,327,180
1,346,891
1,360,031
1,373,172
1,386,312
1,392,882
1,406,023
1,419,163
277,430
280,276
284,544
287,389
291,658
294,503
297,348
300,194
301,617
304,462
307,308
189,821
191,768
194,688
196,635
199,555
201,502
203,449
205,396
206,369
208,316
210,263
67,532
68,225
69,264
69,957
70,996
71,688
72,381
73,074
73,420
74,112
74,805
534,784
540,269
548,496
553,981
562,208
567,693
573,178
578,663
581,406
586,891
592,376
Overall
Total €
1,815,973
1,834,598
1,862,536
1,881,161
1,909,099
1,927,725
1,946,350
1,964,975
1,974,288
1,992,914
2,011,539
TABLE 13 Projected cost (€) of respite care, 2011-2021 – HSE SOUTH
In-the-home respite (70% of total hours)
Out-of-home respite (30% of total hours)*
Year
Delivered
by
healthcare
assistant/
carer
(Cat. 1)
Delivered
by
registered
nurse
(Cat. 2)
Specialist
respite,
delivered
by CNS
(Cat.3)
Total €
General
(Cat. 1)
General
plus
(Cat. 2)
Specialist
(Cat. 3)
Total €
2011
2012
2013
2014
2015
2016
2017
2018
2019
2020
2021
560,611
568,620
576,628
581,968
589,976
597,985
600,655
605,994
608,663
694,090
616,672
649,434
658,712
667,990
674,175
683,452
692,730
695,822
702,007
705,100
804,061
714,378
169,697
172,121
174,545
176,161
178,586
181,010
181,818
183,434
184,242
210,101
186,666
1,379,742
1,399,453
1,419,163
1,432,304
1,452,014
1,471,725
1,478,295
1,491,435
1,498,006
1,708,252
1,517,716
298,771
303,039
307,308
310,153
314,421
318,689
320,112
322,957
324,380
369,907
328,648
204,422
207,343
210,263
212,210
215,130
218,051
219,024
220,971
221,944
253,094
224,865
72,727
73,766
74,805
75,498
76,537
77,576
77,922
78,615
78,961
90,043
80,000
575,921
584,148
592,376
597,861
606,088
614,316
617,058
622,543
625,285
713,045
633,513
Overall
Total €
1,955,663
1,983,601
2,011,539
2,030,164
2,058,102
2,086,040
2,095,353
2,113,978
2,123,291
2,421,297
2,151,229
*Out-of-home respite costs do not include overheads, e.g. water, light, heat, cleaning, catering, etc., nor administration or management costs.
41
3.11 Limitations of the financial projections
Thereareanumberoflimitationstothefinancialprojectionsinthisrespiteneedsassessment.
• Asthereiscurrentlyadearthoffinancialinformationregardingtheprovisionofrespite
servicesforchildrenwithlife-limitingconditions, theprojectionsaboverepresentthe
total cost offundingrespiteservices,anddo not take into account services already
provided. Thus, the cost of providing new funding for respite care may be
significantly less than estimated.
• Theprojectedcostsofprovidingrespitecarearebasedonfiguressuppliedbythe
Jack & Jill Foundation and LauraLynn, Ireland’s Children’s Hospice. The figures
providedbytheformerarespecifictotheJack&JillFoundation.Thefiguresprovided
by LauraLynn are based on the average costs at the mid-point of the HSE’s
consolidatedpayscales.
• NeithertheConsumerPriceIndexnoranyequivalentmeasureofinflationhasbeen
applied.Thismayhaveanimpact,especiallygiventhecurrentuncertaintysurrounding
Irisheconomicprojections.
• Thecapitalexpenditurerequiredtoupgrade/developtherequiredout-of-homeservice
locationshasnotbeenfactoredintothesefinancialprojections.
42
Ó SECTION 4
Conclusion and implementation
4.1 Introduction
Thisneedsassessmenthasfoundthatwhilerespiteservicesforchildrenwithlife-limitingconditions
arecurrentlyprovidedinallfourHSEadministrativeregions,accesstotheseservicesisoften
dependentonthechild’sgeographicallocationanddiagnosis.Theprojectedneedforrespite
serviceprovisionhasbeenclearlyidentifiedand,bearinginmindthelimitationsofthefinancial
projections,thecostofprovidingtheseserviceshasbeenestimated.Oneofthemainchallenges
toidentifyinganddevelopingrespiteservicesforchildrenwithlife-limitingconditionsandtheir
familiesisensuringconsistencyamongservicesprovidersregardingthedefinitionsandterminology
usedinchildren’spalliativecareandinrespiteprovisionforthisgroupofserviceusers.
Theobjectivesofthisstudywereto:
• Estimate the number of children in the HSE South and HSE West administrative
regionswhoarelivingwithalife-limitingconditionandwhosefamiliesneedorhave
accesstorespiteservices.
• Wherepossible,updatetheinformationprovidedinthepreviousreportonHSEDublin
Mid-LeinsterandDublinNorth-East.
• Establishasaccuratelyaspossiblecurrentservicelevelsandlocationofcare.
• Wherepossible,identifythegapbetweentheprojectedneedforrespiteservicesfor
childrenwithlife-limitingconditions(basedonage,locationandcondition)andthe
currentlevelofrespitecareprovided.
• Estimate the cost of providing appropriate services to such children, based on
populationestimates.
4.2 Current service provision – the main issues
Terminology
There is a lack of consistency among service providers and other stakeholders regarding the
terminologyusedinchildren’spalliativecare,includingtheterms‘life-limiting’and‘respite’.This
mayhaveresultedinorganisationsunder-reportingavailableserviceprovision,andthusthefindings
maynotpresentacompletepictureoftherespiteservicesthatexistineachofthefourHSEregions.
Thislackofclaritymayalsomakeitmoredifficultforfamiliestoidentifywhichservicestheycan
accessandhow.
Futureworkshouldincludeamappingofrespiteservicesforchildrenwithlife-limitingconditions
ataregionallevel.
43
Accessibility
Althoughthereareanumberofknownestablishedprovidersofrespitetochildrenwithlife-limiting
conditionsandtheirfamilies,inmanycasesaccesstoservicesmaybeonanad-hocbasis.There
arealsoserviceswhichwouldnotconsiderthemselvestobeprovidersofrespitetochildrenwith
life-limitingconditions,butwhichmayactuallyprovideappropriateservices.Furtherworkisneeded
toestablishwhetherthesewouldbe(a)willingandabletoidentifythemselvesasprovidingthese
services,and/or(b)capableofdevelopingtheirservicestomeettheneedsofchildrenwithlifelimitingconditionsandtheirfamilies.
Standards
Therearecurrentlynostandardsfortheprovisionofrespitecareforchildrenwithlife-limiting
conditionsandtheirfamilies,eithernationallyorinternationally.ItisrecommendedthattheNational
DevelopmentCommitteeforChildren’sPalliativeCareexaminethefeasibilityofdevelopingsuch
standards.
Equity of service provision
Thefindingsofthisneedsassessmentconfirmthattheprovisionofrespiteservicestochildrenwith
life-limitingconditionsandtheirfamiliesisstilldependentondiagnosisandlocationratherthanon
need.Becauseofthedatacollectionissuesdiscussedabove,itisimpossibleatthistimetoclearly
establishthegapbetweentheprojectedneedforrespiteservicesforchildrenwithlife-limiting
conditions(basedonage,location,condition)andthecurrentlevelofrespitecareprovided.
Assessment and evaluation processes
Duringthedatacollectionprocess,itbecameevidentthatfamiliesofchildrenwithlife-limiting
conditionsmaynotundergoassessmentandevaluationprocessestoestablishandmonitortheir
respiteneeds.
Itisclearthatanassessmentprocessappliedacrosstheboardforallfamilieswouldassistinthe
delivery of equitable, needs-based services. There are a number of assessment tools in
developmentwithinthehealthsectorwhichcouldbeusedtoassesstheneedforrespitecare,
includingtheTCDchildren’sframeworkreport(Buckleyetal,2006)andotherinstrumentsbeing
developedbytheHSE.
Quality of services
Anexaminationofthequalityofrespiteservicesprovidedtochildrenwithlife-limitingconditions
andtheirfamilieswasnotcoveredinthisstudy.Thedevelopmentofnationalstandardsisrequired
andshouldincludeconsiderationofhowhigh-qualitypatientandfamilyorientedservices,which
complementotherservices,canbedeveloped.
44
4.3 Recommendations and implementation of findings
Thisneedsassessmentindicatesthatiftherequiredappropriaterespiteservicesaretobeprovided,
anumberofkeyactionsneedtobeundertaken.Thefollowingrecommendationsaremade:
1. The National Development Committee for Children’s Palliative Care should progress the
followingthroughitsprogrammeofwork:
• Overseethedevelopmentofnationalstandardsfortheprovisionofbothin-the-home
andout-of-homerespitecareforchildrenwithlife-limitingconditionsandtheirfamilies.
• Examinethefeasibilityofdevelopinganassessmenttoolforrespiteservices.
• Promoteunderstandingoftheterminologyusedinchildren’spalliativecare(including
respitecare)amongserviceprovidersandstakeholders.
• Recommendtheestablishmentofregionalgroupstooverseethedevelopmentof
servicesforchildrenwithlife-limitingconditionsandtheirfamilies–see (2) below.
2. Aregionalgroupwitharemittofurtherdevelopthefindingsofthisreportshouldbeestablished
ineachHSEregion.Representationshouldincludepaediatrics,disabilityservices,acuteand
communityservicesandspecialistpalliativecare.Eachgroupshouldalsoincludearegional
outreachnurseforchildrenwithlife-limitingconditions.Eachgroupshould:
• Mapthefullrangeofexistingrespiteservicesforchildrenwithlife-limitingconditions
andtheirfamilies.
•
•
•
•
Identifytheneedsoffamiliesforbothin-the-homeandout-of-homerespite.
Identifywhererespiteservicesneedtobedeveloped/provided.
Planforthedevelopmentandprovisionofrespiteservices.
Ensurethatnationalstandards,whendeveloped,areimplementedacrosstheregion.
Thechildren’soutreachnursesshouldplayaleadroleinthis.
3. Where out-of-home respite is required, health services should work with regional service
providers(voluntaryandstatutory)toascertain:
• wherein-patientrespitecareisneeded
• whetherfacilities/servicesarecurrentlyavailablethatmaybeabletomeettheneeds
ofchildrenwithlife-limitingconditionsandtheirfamilies,andwhicharewillingto
ensurethattheyhaveboththephysicalenvironmentandappropriatestaffskillsand
experiencetodoso.
• whetheradditionalfacilitiesarerequiredtomeettheneedsoffamilies.
4. Theeducationandon-goingsupportneedsofthoseorganisationsprovidingrespiteshouldbe
consideredbothnationalandregionally.
5. Itisprojectedthattheneedforrespiteservicesforchildrenwithlife-limitingconditionswillgrow
steadilyovertheperiodanalysed,upto2021.Itisstronglyrecommendedthatprojectionsof
futureneedshouldbereviewedandbasedonaccurateIrishdatasets.Thisneedsassessment
shouldberepeatedinfouryears’time.
45
4.4 Conclusion
Itisestimatedthatthedevelopmentandprovisionofin-the-homeandout-of-homerespitecare,
asoutlinedinthisneedsassessment,mayrequireatotalbudgetofapproximately€7.6mper
annum,risingtoapproximately€8.62mperannumby2021.Throughapartnershipapproach,the
appropriatere-structuringofexistingrespiteprovisionandthedevelopmentofnewservicesover
timewillensurethattherespiteneedsofchildrenandtheirfamiliescanbemet.
ThisneedsassessmentarosefromoneoftherecommendationsoftheGovernment’schildren’s
palliativecarepolicy,publishedin2010(DoHC,2010).Sincethen,anumberofthatpolicy’skey
recommendations have been implemented, including the establishment of the National
DevelopmentCommitteeforChildren’sPalliativeCare,whichhasresponsibilityforimplementing
thepolicyandoverseesthedevelopmentofchildren’spalliativecareservicesacrossthecountry.
Ireland’sfirstConsultantPaediatricianwithaSpecialInterestinPaediatricPalliativeMedicinehas
beenappointed,andregionally-basedoutreachnursesforchildrenwithlife-limitingconditionshave
been(andarecurrentlybeing)appointed.Aprogrammeofeducation/trainingoncaringforchildren
withlife-limitingconditionshasbeenestablished,andthedevelopmentofaMinimumDataSetis
nearingcompletion.
Thisstudyhasidentifiedarequirementforarangeofrespitecareservicestobedevelopedina
coordinatedandstructuredwaytomeettheneedsof816childrencurrently,anduptoanestimated
925childrenby2021.Itsfindingsshouldunderpinthedevelopmentandplanningofresponsive
respiteservicesforchildrenwithlife-limitingconditionsandtheirfamilies.
Itishopedthatanupdateofthisneedsassessmentin2017willidentifytangibleimprovementsin
theprovisionofrespiteservicesforchildrenwithlife-limitingconditionsandpalliativecareneeds
andtheirfamilies.
46
Ó References
• ACT (1997) A Guide to the Development of Children’s Palliative Care Services.
AssociationforChildrenwithLife-threateningorTerminalConditionsandtheirFamilies
andtheRoyalCollegeofPaediatricsandChildHealth(RCPCH),Bristol,UK
• ACT (2003) A Guide to the Development of Children’s Palliative Care Services.
AssociationforChildrenwithLife-threateningorTerminalConditionsandtheirFamilies
andtheRoyalCollegeofPaediatriciansandChildHealth(RCPCH),Bristol,UK.
• ACT (2009) A Guide to the Development of Children’s Palliative Care Services.
AssociationforChildrenwithLife-threateningorTerminalConditionsandtheirfamilies,
Bristol,UK
• Buckley, H., Whelan, S. & Horwath, J. (2006) Framework for the Assessment of
VulnerableChildren&theirFamilies,Children’sResearchCentre,TrinityCollegeDublin
&UniversityofSheffield.
• Craft,A.&Killen,S.(2007)PalliativeCareServicesforChildrenandYoungPeoplein
England.DepartmentofHealth,London.
• Craig, F., Abu-Saad Huijer, H., Benini, F., Kuttner, L., Wood, C., Feraris, P.C. &
Zernikow, B. (2008) IMPaCCT: Standards of paediatric palliative care in Europe.
European Journal of Palliative Care, 14(3),109-114.
• CSO(2012)VitalStatistics.CentralStatisticsOffice,Ireland
• DH (2008) Better Care Better Lives : Improving outcomes and experiences for
children,youngpeopleandtheirfamilieslivingwithlife-limitingandlife-threatening
conditions.DepartmentofHealth,London,p.54.
• DOHC(2010)PalliativeCareforChildrenwithLife-limitingConditionsinIreland–A
NationalPolicy.DepartmentofHealthandChildren,Dublin.
• DOHC/IHF(2005)APalliativeCareNeedsAssessmentforChildren.Departmentof
HealthandChildrenandIrishHospiceFoundation,Dublin.
• Eaton,N.(2008)‘Idon’tknowhowwecopedbefore’:Astudyofrespitecarefor
childreninthehomeandhospice.J Clin Nurs, 17(23),3196-204.
• Emond,A.&Eaton,N.(2004)Supportingchildrenwithcomplexhealthcareneeds
andtheirfamilies–anoverviewoftheresearchagenda.Child Care Health Dev., 30(3),
195-199.
• Fraser,L.K.,Miller,M.,Hain,R.,Norman,P.,Aldridge,J.,McKinney,P.A.&Parslow,
R.C.(2012)Risingnationalprevalenceoflife-limitingconditionsinchildreninEngland.
Pediatrics, 129(4),e923-e929.
• GovernmentofIreland(2005)DisabilityAct,.GovernmentofIreland,Ireland.
• Hain,R.(2005)PalliativecareinchildreninWales:astudyofprovisionandneed.
Palliative Medicine, 19,137-142.
47
• Horsburgh,M.,Trenholme,A.&Huckle,T.(2002)Paediatricrespitecare:aliterature
reviewfromNewZealand.Palliative Medicine, 16,99-105.
• IHF/CSH(2011)RespiteServicesforChildrenwithLife-limitingConditionsandtheir
Families.ANeedsAssessmentforHSEDublinMid-LeinsterandHSEDublinNorthEast.IrishHospiceFoundationandChildren’sSunshineHome,Dublin.
• Jones,R.,Trenholme,A.,M.,H.&Riding,A.(2002)Theneedforpaediatricpalliative
careinNewZealand.The New Zealand Medical Journal, 115(1163).
• Ling,J.(2012)Respitesupportforchildrenwithalife-limitingconditionandtheir
parents:aliteraturereview.International Journal of Palliative Nursing, 18(3),129-134.
• Llewellyn, G., Dunn, P., Fante, M., Turnbull, L. & Grace, R. (1999) Family factors
influencing out-of-home placement decisions. Journal of Intellectual Disability
Research, 43,219-233.
• NationalEndofLifeCareIntelligenceNetwork(2012)Whatdoweknownowthatwe
didn’tknowayearago?NewintelligenceonendoflifecareinEngland.NHS,London
• NorthernIrelandHospiceCare(2000)AssessmentofNeedofLife-limitedChildrenin
NorthernIreland.NorthernIrelandHospice,Belfast,
• TogetherforShortLives(2012)BriefingformembersontheLeedsDataStudy.Vol.
2012TogetherforShortLives,UK
48
Ó Appendices
APPENDIX 1 Steering Committee and Authors/Project Team
Steering Committee
Name
Role/organisation
SharonFoley
ChiefExecutiveOfficer,IrishHospiceFoundation
PhilomenaDunne
ChiefExecutiveOfficer,LauraLynn,Ireland’s
Children’sHospice
MaryDevins
ConsultantPaediatricianwithaSpecialInterestin
PaediatricPalliativeMedicine,OurLady’s
Children’sHospital,Crumlin
SheilaghReaper-Reynolds
GeneralManager-PalliativeCare,AcuteHospital
Services,HSE
Authors/Project Team
Name
Role/organisation
JulieLing
HRBResearchFellow,TrinityCollegeDublin
ClaireQuinn
HeadofEducation&Research,LauraLynn
Ireland’sChildren’sHospice/Lecturer,NUIGalway
EugeneMurray
ResearchConsultant
49
APPENDIX 2 Regional Support Groups
HSE South
SeanAbbott
CopeFoundation,Cork
EileenO’Leary
RegionalSupport(PalliativeCare)HSESouth
SuzanneMoloney
InterimDisabilitySpecialist,Cork
CarolMoore
AreaCo-ordinator,DisabilityServices,HSESouth,
Co.Tipperary
MonicaSheehan
DirectorofPublicHealthNursing,Kerry
AnneSheehan
A/CareGroupCoordinator,DisabilityServices,Kerry
EilinNiMhurchu
LiaisonNurse,Jack&JillFoundation
HSE West
50
PatQuinlan
ChiefExecutive,MilfordCareCentre,Limerick
FergalFlynn
LocalHealthManager,HSEWest
JacquelineGibson
DirectorofPublicHealthNursing,Limerick
RhonaKett-Sheridan
LiaisonNurse,Jack&JillFoundation
MaryMurray
PaediatricNurseSpecialist,Donegal
SiobhanGallagher
ConsultantPaediatrician,HSEMid-WestRegional
Hospitals/CommunityServices
HilaryNoonan
OutreachNurse–ChildrenwithLife-limiting
Conditions,HSE,Limerick
MaryConnor
ClinicalNurseSpecialistPaediatricLiaison,Sligo
BrianMalone
CaseManager,DisabilityServices,Galway
APPENDIX 3 International Classification of Disease (ICD) codes
used to define life-limiting conditions *
Code
Category
140–239
Neoplasms
240–279
Endocrine,NutritionalandMetabolicDiseasesandImmunity
Disorders
280–289
DiseasesofBloodandBlood-formingOrgans
320–389
DiseasesoftheNervousSystemandSenseOrgans
390–459
DiseasesoftheCirculatorySystem
488–519
DiseasesoftheRespiratorySystem(excludingacute
respiratoryinfections)
520-579
DiseasesoftheDigestiveSystem
580–629
DiseasesoftheGenitourinarySystem
710–739
DiseasesoftheMusculoskeletalSystemandConnective
Tissue
740–759
CongenitalAbnormalities
760-779
ConditionsOriginatinginthePerinatalPeriod
* CodesandcategoriesidentifiedbyACT:AssociationforChildrenwithLife-ThreateningorTerminal
ConditionsandtheirFamilies.
51
APPENDIX 4 ACT Care Pathway
Multi-agency Assessment of Child & Family Needs
Family / Carers
• Information
• Financialneeds
• Emotionalneeds
• Siblingwell-being
• Familyfunctioning
• Respite
• Qualityoflife
• Interpreter
• Geneticcounselling
• Transitiontoadult
services
•
•
•
•
•
•
Paediatrician
GP
PHN
PaediatricLinkNurse
PalliativeCareTeam
Children’sOutreach
Nurse
Family / Carers
• Psychologicalsupport
• Training
• Education
• Accesstobenefits
• Respite
• Parentsupportgroup
• Siblinggroup
• Pharmacysupplies
Acute/planned
admission
discharge
Child / Young Person
• Symptoms/pain
• Personalcareneeds
• Therapies
• EmotionalSupport
• Information
• Equipment
• Mobility
• Qualityoflife
• Respite
• School/leisure
• Transitionplan
• Independentliving
Multi-agency Care Plan
& Interventions
Child / Young Person
• Symptom
Management
• Personalcare
• NursingSupport
• Psychologicalsupport
• Respite
• Social/leisure
activities
• Schoolsupport
• Independentliving
Review of Needs
& Prognosis
Recognition of
End of Life
52
Environment
• Homeassessment
• Equipment
• Access
• Transport
• School
•
•
•
•
DisabilityServices
Therapists
VoluntaryAgencies
Schools
Environment
• Homeadaptions
• Aids/equipment
• Motability
APPENDIX 5 Disability Act 2005: Assessment of Need
Part2oftheDisabilityAct2005establishesasystemfortheassessmentofindividualhealthservice
needsoccasionedbythedisabilityand,whereappropriate,educationneedsforpersonswith
disabilitiesaged18yearsorover.Part2wascommencedforchildrenundertheageoffivewith
effectfrom1st June2007.
Part2providesastatutoryentitlementto:
• Anindependentassessmentofhealthandeducationneeds;
• Astatementoftheservices(ServiceStatement)tobeprovided;
• Acomplaintsprocessthroughanindependentredressmechanismifthereisafailure
toprovidetheseentitlements.
PersonswithadisabilityentitledtotheservicesinPart2arethosewitha“substantialrestriction”
whichispermanentorlikelytobepermanent,resultsinasignificantdifficultyincommunication,
learningormobilityorinsignificantlydisorderedcognitiveprocesses,andgivesrisetotheneed
forservicestobeprovidedcontinuallytotheperson,whetherornotachild,or,ifthepersonisa
child,forservicestobeprovidedearlyinlifetoamelioratethedisability
Any person who considers that he or she may have a disability is entitled to apply for an
independentassessmentofneed.Theassessmentwillbeundertakenwithoutregardtocostorto
capacitytoprovideanyservicesidentifiedintheassessment.TheHealthInformationandQuality
Authority(HIQA),hassetappropriatestandardsforcarryingouttheassessmentprocess.
Arisingfromtheassessment,thepersonconcernedwillbegivenanAssessmentReport.The
AssessmentReportwillindicate:
• whetherapersonhasadisability;
• thenatureandextentofthedisability;
• thehealthandeducationneedsarisingfromthedisability;
• theservicesconsideredappropriatetomeetthoseneedsandthetimescaleideally
requiredfortheirdelivery;
• whenareviewoftheassessmentshouldbeundertaken.
Thereisprovisionforarelative,guardianorpersonaladvocatetoapplyforanassessmentonbehalf
ofapersonwithadisability.Eachpersonwithadisabilitywillbeencouragedtoparticipateinhis/her
ownassessmentwhiletakingaccountofthenatureofhis/herdisabilityandhis/herage.Thiswill
alsoincludetakingaccountofhis/herviewsregardingtheirneedsorpreferencesinrelationtothe
provisionofservices.
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Eachpersonfoundtohaveaneedfordisabilityrelatedhealthand/oreducationservices,asaresult
oftheAssessmentReport,willbegivenaServiceStatement.TheServiceStatementwillsetout
thehealthandeducationservicesthatwillbeprovidedtothepersontakingaccountof:
• theAssessmentReport;
• eligibilitycriteriaforservices;
• relevantstandardsandCodesofPractice;
• thepracticabilityofprovidingtheservice;
• thefinancialresourcesavailable.
Theindividualorhis/heradvocateswillbeinvitedtoparticipateinareviewoftheprovisionof
servicesspecifiedintheStatementatintervalsdeterminedbyregulations.
UnderSection12oftheActthereisprovisionforinforming,withthenecessaryconsentofthe
personconcerned,otherpublicbodiesaboutthecontentsofanAssessmentReportsoasto
facilitateaccesstoassessmentforservicesoutsidethehealthandeducationsectors.
Section13oftheActrequirestheHSEtokeeprecordsofassessmentsandservicesprovided,
levelsofunmetneedsandthenumbersofpersonsinvolved.Themaintenanceoftheserecords
willbeinaccordancewiththerequirementsofdataprotectionlegislation.
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APPENDIX 6 Project Advisory Group and external consultation for
the HSE Dublin Mid-Leinster/Dublin North-East children’s respite
needs assessment (2011)
Project Advisory Group, 2011 report
Name
Role/organisation
JoanneBalfe
ConsultantPaediatrician,Children’sSunshineHome
PhilomenaDunne
ChiefExecutiveOfficer,Children’sSunshineHome
ShirleyDevitt
ClinicalServicesManager,Children’sSunshineHome
OwenHensey
ConsultantPaediatrician,Children’sUniversityHospital,
TempleStreet
AnnKennelly
LocalHealthManager,HSENorthCork
JulieLing
ProjectAdvisor,PalliativeCare,SchoolofNursing&
Midwifery,TCD
MarieLynch
ProgrammeDevelopmentManager,IrishHospice
Foundation
JaneMcEvoy
Director-StrategicImplementation,StJohnofGod
HospitallerServices
MarionMeany
LocalHealthManager,HSEWicklow
SineadMoran
LiaisonNurse,Jack&JillFoundation
EugeneMurray
ChiefExecutiveOfficer,IrishHospiceFoundation
MaeveO’Reilly
ConsultantinPalliativeMedicine,OurLady’sChildren’s
Hospital,Crumlin
AnnaPlunkett
DirectorofProgrammeDevelopment,StJohnofGod
CommunityServices
MartinaQuelly
LocalHealthManager,HSEDublinSouth-East
BevanRitchie
OutreachNurse(LifeLimitingConditions),Children’s
UniversityHospital,TempleStreet
SharonVard
Co-Founder,AnamCara
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External consultation, 2011 report
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Name
Role/organisation
KarenBleakley
Children’sPalliativeCareNurseLecturer,NorthernIreland
Children’sHospice
LyndaBrook
MacmillanConsultantinPaediatricPalliativeCare,Alder
HeyChildren’sHospital
MaryDevins
ConsultantinPaediatricPalliativeCare,IWKHealth
Centre,Halifax,NovaScotia,Canada
AlanFinnan
ConsultantPaediatrician,CavanGeneralHospital
MaryJoe Guilfoyle
LiaisonNurse,Jack&JillFoundation
RichardHain
SeniorLecturer,PaediatricPalliativeCare,Univ.ofWales
CollegeofMedicine
HilaryMaguire
ClinicalServicesManager,NorthernIrelandChildren’s
Hospice
PennyO’Connell
RespiteCareCoordinator,HSEDublinNorth-East
KatieRiggs
NurseConsultant–Children’s&YoungPeople’sPalliative
Care,ACT/ScottishChildren’s&YoungPeople’s
PalliativeCareNetwork
The Irish Hospice Foundation
Morrison Chambers – 4th Floor,
32 Nassau Street, Dublin 2.
LauraLynn, Ireland’s Children’s Hospice
Children's Sunshine Home,
Leopardstown Road, Foxrock, Dublin 18.
Tel: (01) 679 3188
Email: [email protected]
Website: www.hospicefoundation.ie
Tel: (01) 289 3151
Email: [email protected]
Website: www.lauralynn.ie