Respite Services for Children with Life-Limiting Conditions and their Families in Ireland. Ó A National Needs Assessment

Save this PDF as:
 WORD  PNG  TXT  JPG

Size: px
Start display at page:

Download "Respite Services for Children with Life-Limiting Conditions and their Families in Ireland. Ó A National Needs Assessment"

Transcription

1 Respite Services for Children with Life-Limiting Conditions and their Families in Ireland Ó A National Needs Assessment

2 Published 2013

3 Ó Contents Foreword Executive Summary Section 1: Introduction to respite services for children with life-limiting conditions 1.1 Introduction 1.2 Backgroundtorespitecareforchildrenwithlife-limitingconditions 1.3 Meetingtherespiteneedsofchildrenwithlife-limitingconditions 1.4 Clinicalgovernanceinchildren srespiteservices 1.5 Conclusion Section 2: Estimation of the prevalence of life-limiting conditions in children, and overview of current respite service provision 2.1 Introduction 2.2 Methodology 2.3 Nationaloverviewofchildpopulation 2.4 Prevalenceoflife-limitingconditionsinchildren 2.5 Nationaloverviewofrespiteservices 2.6 Conclusion Section 3: Future development of services to meet the respite needs of children with life-limiting conditions 3.1 Introduction 3.2 Populationprojections 3.3 Quantifyingtheneedforrespitecare 3.4 Locationofrespitecare(within/outsideofthehome) 3.5 Projectassumptions 3.6 Projectedfutureneedforrespiteservices 3.7 Financialprojections 3.8 Categorisingrespitecare 3.9 Assumptionsunderpinningthecalculatedcosts 3.10 Costofrespiteoptions 3.11 Limitationsofthefinancialprojections Section 4: Conclusion and implementation 4.1 Introduction 4.2 Currentserviceprovision:themainissues 4.3 Recommendationsandimplementationoffindings 4.4 Conclusion References Appendices

4 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-EastandDublinMid- LeinsterregionsoftheHealthServiceExecutive(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

5 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

6 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, families respitecareneedsaredynamic,changingover time.serviceplansanddeliverymustthereforebeflexibleandresponsive,andrespitecareshould bemadeavailablebothwithinthefamilyhomeandoutsideofit,forexampleinachildren shospice orrespiteunit. 4

7 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

8 Figure1 Administrative areas of the Health Service Executive Donegal Mayo Galway Sligo/Leitrim Roscommon Longford / Westmeath Laois/Offaly Cavan/Monaghan Meath Kildare/ West Wicklow Louth North Dublin North West Dublin Dublin North Central Dublin South City Dun Laoghaire Kerry West Cork Clare Limerick North Cork North Lee South Lee North Tipperary East Limerick South Tipperary Waterford Carlow / Kilkenny Wexford Wicklow DublinNorth-East DublinMid-Leinster South West Dublin South East Dublin South West Dublin West 6

9 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

10 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

11 TABLE 1 ACT categories of life-limiting conditions (ACT, 2009) 1. Life-threateningconditionsforwhichcurativetreatmentmaybefeasiblebutcanfail, whereaccesstopalliativecareservicesmaybenecessarywhentreatmentfails. 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, (CSO, 2012) Year Number of deaths Number of deaths from life-limiting conditions TOTAL 2,539 1,930 Average annual no. of childhood deaths 9

12 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

13 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

14 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

15 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-yearperiod ,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

16 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: Ó Category 1: Theprovisionofin-the-homecareforachildwithalife-limitingconditionin ordertoenableparentsand/orotherregularcarerstotendtootherrequirements/activities. Thistypeofrespiteistypicallyprovidedbyatrained/accreditedhealthcareassistantora familymember/friend. Ó Category 2: Theprovisionofcarebyanappropriatelyqualifiedandexperiencedregistered nursewiththerequisiteskillstocareforachildwithalife-limitingconditioninthechild s ownhome. 14

17 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

18 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

19 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

20 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

21 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 7,133 Donegal 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 8,930 Monaghan 14,455 Offaly 19,169 Westmeath 21,124 Wicklow 32,425 HSE HSE Dublin-North East 213,406 Dublin-Mid Leinster 303,129 NATIONAL TOTAL 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

22 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

23 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

24 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 UK Wales NorthernIreland 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

25 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

26 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

Taxation of Illness and Occupational Injury Benefits

Taxation of Illness and Occupational Injury Benefits IT 22 Taxation of Illness and Occupational Injury Benefits ver 13.03 RPC003028_EN_WB_L_1 Introduction Illness Benefit (formerly known as Disability Benefit) and Occupational Injury Benefit paid by the

More information

Employed Person Taking Care of an Incapacitated Individual

Employed Person Taking Care of an Incapacitated Individual IT 47 Employed Person Taking Care of an Incapacitated Individual ver 11.09 RPC001537_EN_WB_L_2 Who can claim? You, your spouse or civil partner may claim tax relief in respect of the cost of employing

More information

IT 27. Tax Relief for Service Charges. ver 15.09 RPC006035_EN_WB_L_2

IT 27. Tax Relief for Service Charges. ver 15.09 RPC006035_EN_WB_L_2 IT 27 Tax Relief for Service Charges ver 15.09 RPC006035_EN_WB_L_2 myaccount is a single access point for all Revenue s secure services (except ROS) and is the quickest and easiest way to manage your tax

More information

DETERMINE YOUR OWN CLAIMS EXPERIENCE MICHAEL A WHELEHAN HEAD OF CLAIMS IPB INSURANCE

DETERMINE YOUR OWN CLAIMS EXPERIENCE MICHAEL A WHELEHAN HEAD OF CLAIMS IPB INSURANCE DETERMINE YOUR OWN CLAIMS EXPERIENCE MICHAEL A WHELEHAN HEAD OF CLAIMS IPB INSURANCE Agenda 1. Footpath/slips and trips 2. Road Liability claims 3. Claims cost escalation 4. A changing propensity to claim?

More information

Treated problem substance use in the Traveller Community. Anne Marie Carew, Jean Long, Suzi Lyons, Delphine Bellerose

Treated problem substance use in the Traveller Community. Anne Marie Carew, Jean Long, Suzi Lyons, Delphine Bellerose Treated problem substance use in the Traveller Community Anne Marie Carew, Jean Long, Suzi Lyons, Delphine Bellerose Introduction Overview of NDTRS Profile cases from the Traveller Community seeking treatment

More information

Treated problem alcohol use in Ireland. 2012 figures from the National Drug Treatment Reporting System

Treated problem alcohol use in Ireland. 2012 figures from the National Drug Treatment Reporting System Treated problem alcohol use in Ireland 2012 figures from the National Drug Treatment Reporting System National Health Information Systems, Health Research Board, April 2014 Summary This update presents

More information

HRB Trends Series. Trends in treated problem alcohol use in Ireland, 2004 to 2006. Summary. Contents

HRB Trends Series. Trends in treated problem alcohol use in Ireland, 2004 to 2006. Summary. Contents HRB Trends Series 1 Trends in treated problem alcohol use in Ireland, 2004 to 2006 Sarah Fanagan, Siobhán Reynolds, Deirdre Mongan and Jean Long Summary National Drug Treatment Reporting System Contents

More information

Home Care Package Scheme. Information Booklet

Home Care Package Scheme. Information Booklet Home Care Package Scheme Health Tips for Older People Keep active Regular physical activity reduces your risk of chronic diseases, such as coronary heart disease, type 2 diabetes, stroke, cancer, osteoporosis

More information

Special Report. September 2015

Special Report. September 2015 Special Report September 2015 Serious Reportable Events Thursday 26 th November 2015 Contents Section Page 1. Summary 2 2: Introduction 3 3: Establishing the SRE Framework 4 4: Analysis of SREs reported

More information

Childminding Ireland. Employing a Nanny. A Tax Guide for Parents

Childminding Ireland. Employing a Nanny. A Tax Guide for Parents Childminding Ireland Employing a Nanny A Tax Guide for Parents 2012 Domestic Employments: An individual who makes payments to an employee in a domestic employment need not register as an employer where:

More information

Access to Specialist Palliative Care Services and Place of Death in Ireland. What the data tells us. IHF Perspectives Series: No 2

Access to Specialist Palliative Care Services and Place of Death in Ireland. What the data tells us. IHF Perspectives Series: No 2 Access to Specialist Palliative Care Services and Place of Death in Ireland What the data tells us IHF Perspectives Series: No 2 Access to Specialist Palliative Care Services and Place of Death in Ireland

More information

Tobacco Free Campus Policy

Tobacco Free Campus Policy Tobacco Free Campus Policy Guidance on Implementation The implementation of the Tobacco Free Campus (TFC) Policy will require a number of resources and supports. In some cases, a local TFC Implementation

More information

Palliative Care Services - Five Year/Medium Term Development Framework

Palliative Care Services - Five Year/Medium Term Development Framework Palliative Care Services - Five Year/Medium Term Development Framework TABLE OF CONTENTS PAGE Foreword 3 Executive Summary 5 1 Introduction 12 1.1 Palliative Care Definition 12 1.2 Objective, Scope & Approach

More information

Tax Credits and Reliefs for Over 65 s

Tax Credits and Reliefs for Over 65 s Tax Credits and Reliefs for Over 65 s INTRODUCTION This is a guide to the tax credits and reliefs available to people aged 65 or over. After you have read this guide, you may require some of the more detailed

More information

Lump Sum Payments (Redundancy or Retirement)

Lump Sum Payments (Redundancy or Retirement) IT 21 Lump Sum Payments (Redundancy or Retirement) Ver. 14.07 RPC005008_EN_WB_L_1 Introduction In general, all payments made by employers to employees and directors are regarded as Pay for tax purposes

More information

Guide to taxation of Married Couples and Civil Partners

Guide to taxation of Married Couples and Civil Partners RPC007325_EN_WB_L_2 IT 2 Guide to taxation of Married Couples and Civil Partners ver 16.04 myaccount is a single access point for all Revenue s secure services (except ROS) and is the quickest and easiest

More information

National Daily Newspapers. National Weekly Newspapers. Regional Newspapers. Page 1 of 4

National Daily Newspapers. National Weekly Newspapers. Regional Newspapers. Page 1 of 4 National Daily Newspapers Irish Times Independent Star Examiner Publications The Evening Echo Fortune Green Irish Times Irish Independent Irish Daily Star Irish Examiner Evening Herald Evening Echo Metro

More information

Self-harm in Ireland: Trends, risk factors and implications for intervention and prevention

Self-harm in Ireland: Trends, risk factors and implications for intervention and prevention Self-harm in Ireland: Trends, risk factors and implications for intervention and prevention Prof. Ella Arensman National Suicide Research Foundation Department of Epidemiology and Public Health, UCC Systematic

More information

IT72 Tax treatment of shares acquired by employees and directors under Unapproved Share Option Schemes

IT72 Tax treatment of shares acquired by employees and directors under Unapproved Share Option Schemes IT72 Tax treatment of shares acquired by employees and directors under Unapproved Share Option Schemes RPC004963_EN_WB_L_1 1. Introduction 1.1 Overview This Explanatory Leaflet is aimed at the individual

More information

National Lottery. Beneficiary Fund. Funded Schemes. Where to apply

National Lottery. Beneficiary Fund. Funded Schemes. Where to apply National Lottery Beneficiary Fund National Lottery Funded Schemes Where to apply The National Lottery generates funds for good causes in the areas of Youth, Sport, Recreation and Amenities; Health & Welfare;

More information

RE: ALTERING THE STRUCTURE OF HOUSEHOLD WASTE COLLECTION MARKETS A DISCUSSION DOCUMENT JUNE 2011

RE: ALTERING THE STRUCTURE OF HOUSEHOLD WASTE COLLECTION MARKETS A DISCUSSION DOCUMENT JUNE 2011 2 nd September 2011 Mr. Eoin Corrigan Department of Environment, Community and Local Government Custom House Dublin 1 Dear Mr. Corrigan RE: ALTERING THE STRUCTURE OF HOUSEHOLD WASTE COLLECTION MARKETS

More information

Home Renovation Incentive Guide for Homeowners or Landlords

Home Renovation Incentive Guide for Homeowners or Landlords Home Renovation Incentive Guide for Homeowners or Landlords This Guide updates the September 2015 version December 2015 myaccount is a single access point for all Revenue s secure services (except ROS)

More information

Guide to your payments

Guide to your payments Guide to your payments Contents 03 Understanding your payments 04 I have an approved retirement fund 10 I have an annuity 14 A guide to your Tax Credits and Universal Social Charge Certificate 18 Revenue

More information

Quarterly National Household Survey

Quarterly National Household Survey 3 May 006 Average cost of paid childcare per household per week classified by region, December-February 005 Border Midland West Dublin Mid-East Mid-West South-East Published by the Central Statistics Office,

More information

AEGI. What does the AEGI offer? Will it cost anything? What is the Adult Educational Guidance Initiative (AEGI)? Who is it for? Definition of Guidance

AEGI. What does the AEGI offer? Will it cost anything? What is the Adult Educational Guidance Initiative (AEGI)? Who is it for? Definition of Guidance AEGI Adult Educational Guidance Initiative What is the Adult Educational Guidance Initiative (AEGI)? The AEGI is a Department of Education and Skills funded initiative which provides a quality educational

More information

Community Mental Health Services in Ireland:

Community Mental Health Services in Ireland: Activity and catchment area characteristics 2004 Community Mental Health Services in Ireland: Activity and Characteristics 2004 Mental Health Commission May 2006 Activity and catchment area characteristics

More information

Home Renovation Incentive scheme (HRI) Guide for Homeowners. Relevant to qualifying works carried out and paid for before April 2014

Home Renovation Incentive scheme (HRI) Guide for Homeowners. Relevant to qualifying works carried out and paid for before April 2014 Home Renovation Incentive scheme (HRI) Guide for Homeowners Relevant to qualifying works carried out and paid for before April 2014 December 2013 Contents 1. What is the Home Renovation Incentive (HRI)

More information

Applying in person for Probate

Applying in person for Probate Applying in person for Probate High Court What is Probate? When a person dies, it is sometimes necessary to apply to the Probate Office for Probate. This is a legal process which authorises someone to

More information

Capita Asset Services (Ireland) Limited acting as Operator of the SME Credit Guarantee Scheme

Capita Asset Services (Ireland) Limited acting as Operator of the SME Credit Guarantee Scheme 1 st Quarter Report of 2015 to the Minister for Jobs, Enterprise and Innovation detailing the analysis and performance of the SME Credit Guarantee Scheme at 31 st March 2015 Capita Asset Services (Ireland)

More information

Adoption in Ireland today

Adoption in Ireland today Adoption in Ireland today for birth parents considering adoption 1 This is the second booklet in a series of three for birth parents considering adoption 2 This booklet focuses on infant adoption. For

More information

Code of Practice for Determining Employment or Self-Employment Status of Individuals.

Code of Practice for Determining Employment or Self-Employment Status of Individuals. Code of Practice for Determining Employment or Self-Employment Status of Individuals. Code of Practice in determining Employment status This leaflet was prepared by the Employment Status Group set up under

More information

Annual Motor Insurance Seminar Gearing up for the future. Tuesday 18 November 2014 Conrad Hotel, Dublin

Annual Motor Insurance Seminar Gearing up for the future. Tuesday 18 November 2014 Conrad Hotel, Dublin Annual Motor Insurance Seminar Gearing up for the future Tuesday 18 November 2014 Conrad Hotel, Dublin Glenn Gillard Partner, Head of Insurance 3 4 5 Nov 2013 Apr 2014 July 2015 Sept 2014 Nov 2014 New

More information

THE TREND OF MODERATE HOUSE PRICE GROWTH CONTINUES IN Q3

THE TREND OF MODERATE HOUSE PRICE GROWTH CONTINUES IN Q3 Q3 2015 Results Property report myhome.ie report in partnership with THE TREND OF MODERATE HOUSE PRICE GROWTH CONTINUES IN Q3 PRIVATE CLIENTS DAVY MADE A DIFFERENCE THAT MATTERS TO ME. You don t accumulate

More information

The main findings and their implications are:

The main findings and their implications are: HRB Trends Series 7 Trends in treated problem opiate use in Ireland, 2002 to 2007 Anne Marie Carew, Delphine Bellerose, Suzi Lyons and Jean Long National Drug Treatment Reporting System Contents Summary

More information

Presentation on the MOMENTUM Programme

Presentation on the MOMENTUM Programme Presentation on the MOMENTUM Programme MOMENTUM Projects are supported by both the Irish Government and the European Social Fund Ciarán Conlon, Director FÁS National Programmes & Standards Investing in

More information

Appendix 2: National contacts for Children and Family Social Services of the HSE

Appendix 2: National contacts for Children and Family Social Services of the HSE Appendix 2: National contacts for Children and Family Social Services of the HSE Also listed on HSE website (www.hse.ie/go/socialworkers) and from HSE LoCall Tel. 1850 24 1850. These contact numbers may

More information

Microfinance Ireland Microenterprise Loan Fund Scheme for the period to 30 th June 2013

Microfinance Ireland Microenterprise Loan Fund Scheme for the period to 30 th June 2013 Microfinance Ireland Microenterprise Loan Fund Scheme for the period to 30 th June 2013 This financing benefits from a guarantee issued under the European Progress Microfinance Facility established by

More information

T he Participation Support Team for Comhairle na nóg

T he Participation Support Team for Comhairle na nóg The Networking Events 2014 T he Participation Support Team for Comhairle na nóg organised and ran four Young People s Networking Events around the country in April 2014. One was held in Limerick, one in

More information

National Overview Meeting on Addiction Services. in Mental Health Services

National Overview Meeting on Addiction Services. in Mental Health Services National Overview Meeting on Addiction Services in Mental Health Services Introduction In 2011 as in other years, the Inspectorate was interested in looking at a range of mental health services on a national

More information

Incapacitated Child Tax Credit

Incapacitated Child Tax Credit IT 18 Incapacitated Child Tax Credit Ver. 13.03 RPC002999_EN_WB_L_1 Introdction The tax system provides additional tax credits and exemption of certain incomes in respect of persons with disabilities of

More information

HSE 2007 Employment Control Framework and Allocation of the Health Service Executive approved employment ceiling as at the start of 2007

HSE 2007 Employment Control Framework and Allocation of the Health Service Executive approved employment ceiling as at the start of 2007 National Human H Resources Directorate Health Services Executive, 2 nd Floor, Dr Steeven s Hospital; Dublin 8. HSE HR Circular 04/2007 30 th March 2007 Each National Director HSE and Assistant National

More information

Cyclist Injuries A Review of 2012 Casualties. Research Department, 6th August 2014. Údarás Um Shábháilteacht Ar Bhóithre Road Safety Authority

Cyclist Injuries A Review of 2012 Casualties. Research Department, 6th August 2014. Údarás Um Shábháilteacht Ar Bhóithre Road Safety Authority Cyclist Injuries A Review of 2012 Casualties Research Department, 6th August 2014 Údarás Um Shábháilteacht Ar Bhóithre Road Safety Authority A review of cyclist casualties in 2012 This report has been

More information

Debt Stabilisation and Hotel Investment Feasibility Aiden Murphy, Crowe Horwath. 8 June 2015

Debt Stabilisation and Hotel Investment Feasibility Aiden Murphy, Crowe Horwath. 8 June 2015 Debt Stabilisation and Hotel Investment Feasibility Aiden Murphy, Crowe Horwath 8 June 2015 Audit Tax Tax Advisory 1 Third Irish Hotel Investment Conference Discussion Points Debt Stabilisation What s

More information

Plan P Rules. 1) Definitions. Terms and Conditions of Membership

Plan P Rules. 1) Definitions. Terms and Conditions of Membership Plan P Rules Terms and Conditions of Membership Applicable to new registrations or renewals on/or after 1st January 2010. Please read and retain for future reference. Subsequent rules changes will be communicated

More information

TO BOARDS OF MANAGEMENT, PRINCIPAL TEACHERS AND TEACHING STAFF IN PRIMARY SCHOOLS

TO BOARDS OF MANAGEMENT, PRINCIPAL TEACHERS AND TEACHING STAFF IN PRIMARY SCHOOLS Circular 0057/2013 TO BOARDS OF MANAGEMENT, PRINCIPAL TEACHERS AND TEACHING STAFF IN PRIMARY SCHOOLS Panel access for fixed-term/temporary (this includes substitute) and part-time teachers to the Supplementary

More information

Cycle to Work Scheme

Cycle to Work Scheme Cycle to Work Scheme Frequently Asked Questions What is the purpose of the scheme?... 2 When did the scheme come into effect?... 2 What are the benefits of the scheme for employees/directors?... 2 What

More information

.ie Domain. Profile Report

.ie Domain. Profile Report .ie Domain Profile Report July 2015 Foreword Today marks the publication of IEDR s first Domain Profile Report. The IE Domain Registry (IEDR) is responsible for the management and administration of Ireland

More information

Inspectorate of Mental Health Services. National Overview of Psychologists Working in Mental Health Services Ireland 2012

Inspectorate of Mental Health Services. National Overview of Psychologists Working in Mental Health Services Ireland 2012 Inspectorate of Mental Health Services National Overview of Psychologists Working in Mental Health Services Ireland 2012 As part of the inspection of mental health services in 2012, the Inspector of Mental

More information

NATIONAL CONTACTS FOR HSE CHILDREN & FAMILY SERVICES

NATIONAL CONTACTS FOR HSE CHILDREN & FAMILY SERVICES NATIONAL CONTACTS FOR HSE CHILDREN & FAMILY SERVICES Also listed on HSE website (www.hse.ie/go/socialworkers) and from HSE LoCall Tel. 1850 241850. These contact numbers may be updated from time to time.

More information

Vol. 2012, No.3. Abstract

Vol. 2012, No.3. Abstract The Irish SME lending market - a snapshot, December 2010 Martina Lawless and Fergal McCann Lawless and McCann, SME Lending Snapshot Economic Letter Series Vol. 2012, No.3 Abstract The Prudential Capital

More information

REFERENDUM RESULTS PUBLISHED BY THE DEPARTMENT OF THE ENVIRONMENT, COMMUNITY AND LOCAL GOVERNMENT DUBLIN

REFERENDUM RESULTS PUBLISHED BY THE DEPARTMENT OF THE ENVIRONMENT, COMMUNITY AND LOCAL GOVERNMENT DUBLIN REFERENDUM RESULTS 1937 2015 REFERENDUM RESULTS 1937 2015 PUBLISHED BY THE DEPARTMENT OF THE ENVIRONMENT, COMMUNITY AND LOCAL GOVERNMENT DUBLIN AVAILABLE TO DOWNLOAD (in pdf format) AT WWW.ENVIRON.IE

More information

APPLICATION PACK FOR CONTRACTORS APPLYING FOR A FIRST LICENCE

APPLICATION PACK FOR CONTRACTORS APPLYING FOR A FIRST LICENCE APPLICATION PACK FOR CONTRACTORS APPLYING FOR A FIRST LICENCE (Contains Guidelines for Contractors applying for a First Licence and includes Application Form and Garda Vetting Form) April 2015 PSA 45-N-2015

More information

POPULATION AGEING IN IRELAND. Projections 2002-2021

POPULATION AGEING IN IRELAND. Projections 2002-2021 POPULATION AGEING IN IRELAND Projections 2002-2021 Peter Connell (Information System Services, Trinity College Dublin) Dr. Dennis Pringle (Department of Geography and National Institute of Regional and

More information

Landfill Gas In Ireland - The Facts

Landfill Gas In Ireland - The Facts Landfill Gas In Ireland - The Facts Almost two million tonnes of municipal solid waste (MSW) were generated in Ireland in 1998, over 90% of which was consigned to landfill. At landfill, bacteria cause

More information

Boardmatch Ireland Sample of board positions from www.boardmatchireland.ie (1)

Boardmatch Ireland Sample of board positions from www.boardmatchireland.ie (1) Boardmatch Ireland (1) Organisation (2) Area of service Location Position name Position description Organisation supporting and promoting volunteering in Carlow. Volunteerism Carlow Board Members Join

More information

Directory of Hospitals (and Treatment Centres) IDA Business Park, Purcellsinch, Dublin Road, Kilkenny.

Directory of Hospitals (and Treatment Centres) IDA Business Park, Purcellsinch, Dublin Road, Kilkenny. Directory of Applicable to new registrations or renewals on/or after 1st January 2014. Voluntary Health Insurance Board An Bord Árachais Sláinte Shaorálaigh Postal Address: IDA Business Park, Purcellsinch,

More information

Social Care Division Operational Plan 2015

Social Care Division Operational Plan 2015 Social Care Division Operational Plan 2015 201 4 Social Care Priorities System Wide Priorities Improve quality and safety with a focus on: - Service user experience - Development of a culture of learning

More information

Pre-Budget 2016 Submission

Pre-Budget 2016 Submission ACTIVE RETIREMENT NETWORK IRELAND MISSION STATEMENT ARNI will reach out to all older people to end loneliness through friendship and support Pre-Budget 2016 Submission June 2015 1. Introduction 1.1 About

More information

NATIONAL WASTE COLLECTION PERMIT OFFICE

NATIONAL WASTE COLLECTION PERMIT OFFICE OFFALY COUNTY COUNCIL AS THE NATIONAL WASTE COLLECTION PERMIT OFFICE NEW Waste Collection Permit Application Form & Waste Collection Permit REVIEW Application Form Applicant Name: Telephone Number: Postal

More information

and Transport The average length of stay by overseas travellers to Ireland fell marginally between 2011 and 2012, from 7.7 nights to 7.4 nights.

and Transport The average length of stay by overseas travellers to Ireland fell marginally between 2011 and 2012, from 7.7 nights to 7.4 nights. 15 Tourism, Travel and Transport Total expenditure on domestic trips by Irish residents in 2012 amounted to 1,345.4 million, of which almost 785 million was spent on holidays. The average length of stay

More information

OPW HANDBOOK FOR THE CONSULTANTS DIRECT INVITATION LISTS (CDIL)

OPW HANDBOOK FOR THE CONSULTANTS DIRECT INVITATION LISTS (CDIL) OPW HANDBOOK FOR THE CONSULTANTS DIRECT INVITATION LISTS (CDIL) FOR CONSULTANCY CONTRACTS WITH AN ESTIMATED VALUE OF LESS THAN 50,000 (EXCLUSIVE OF VAT) Table of Contents 1.0 Introduction...3 1.1 CDIL

More information

A Review of Public Liability Awards 2007 & 2008

A Review of Public Liability Awards 2007 & 2008 A Review of Public Liability Awards 2007 & 2008 June 2009 Introduction During these tough economic times, some companies and organisations who admit the public to their facilities may be tempted to cut

More information

Service to practitioners and business taxpayers

Service to practitioners and business taxpayers Revenue s Service to Practitioners and Business Taxpayers Table of Contents 1. Introduction... 2 2. Information seeking... 4 3. Non-technical or simpler technical queries... 5 4. Revenue Technical Service...

More information

Cystic Fibrosis. and the work of Cystic Fibrosis Ireland. Cystic Fibrosis Ireland 24 Lower Rathmines Road, Dublin 6. LoCall:

Cystic Fibrosis. and the work of Cystic Fibrosis Ireland. Cystic Fibrosis Ireland 24 Lower Rathmines Road, Dublin 6. LoCall: Cystic Fibrosis and the work of Cystic Fibrosis Ireland Cystic Fibrosis Ireland 24 Lower Rathmines Road, Dublin 6 Tel: 01 496 2433 Fax: 01 496 2201 LoCall: 1890 311211 Web: www.cfireland.ie Email: info@cfireland.ie

More information

Honda - Approved Authorised Treatment Facilities (ATF's)

Honda - Approved Authorised Treatment Facilities (ATF's) Contact List July 2014 Carlow Company Name : Car Salvage Ireland Address : Clonagoose, Fenagh Road, Borris, Co. Carlow Tel / Fax : Tel: 059 9773551 Cavan Company Name : Cavan Car Parts Address : Crimlin,

More information

Our vision: A national culture where all commit to safe and healthy workplaces and the safe and sustainable management of chemicals

Our vision: A national culture where all commit to safe and healthy workplaces and the safe and sustainable management of chemicals 10 Summary of Workplace Injury, Illness and Fatality Statistics 2009-2010 Our vision: A national culture where all commit to safe and healthy workplaces and the safe and sustainable management of chemicals

More information

Early Leavers What Next?

Early Leavers What Next? Early Leavers What Next? Report on Early Leavers from Post-Primary Schools Pupils Enrolled in 2010/2011 and not in 2011/2012 March 2016 This report may be accessed at: Early Leavers - What Next? For further

More information

National Directorate Fire and Emergency Management

National Directorate Fire and Emergency Management Keeping Communities Safe A Framework for Fire Safety in Ireland Comhshaol, Pobal agus Rialtas Áitiúil Environment, Community and Local Government National Directorate for Fire andfor Emergency Managem

More information

WASTE COLLECTION PERMIT APPLICATION FORM

WASTE COLLECTION PERMIT APPLICATION FORM Version 3.1 WASTE COLLECTION PERMIT APPLICATION FORM Guidance Notes & Application Form For Both New & Review Waste Collection Permit Applications Applicant Name: Telephone Number: Postal Address: FORM

More information

Primary Care Division

Primary Care Division Primary Care Division Operational Plan 2015 Primary Care Priorities Primary Care Improve access to primary care services and reduce waiting lists and waiting times. Implement models of care for chronic

More information

EUROPEAN AGRICULTURAL FUND FOR RURAL DEVELOPMENT (EAFRD) RURAL DEVELOPMENT PROGRAMME (RDP) 2014-2020 IRELAND LEADER

EUROPEAN AGRICULTURAL FUND FOR RURAL DEVELOPMENT (EAFRD) RURAL DEVELOPMENT PROGRAMME (RDP) 2014-2020 IRELAND LEADER EUROPEAN AGRICULTURAL FUND FOR RURAL DEVELOPMENT (EAFRD) RURAL DEVELOPMENT PROGRAMME (RDP) 2014-2020 IRELAND LEADER Acknowledgement with gratitude to Fáilte Ireland and Waterford Leader Partnership for

More information

Approved Hospitals, Scan Centres and Treatment Centres

Approved Hospitals, Scan Centres and Treatment Centres Maternity Out-patient List of Cover For Us Approved Hospitals, Scan Centres and Treatment Centres Hospital Cover For All Of Us Travel Sports Cover Out-patient Scan Maternity International Health & Travel

More information

Comhairle Members Networking Events 2016

Comhairle Members Networking Events 2016 Comhairle Members Networking Events 2016 Absolute Hotel, Limerick, 22nd March 2016 Glasshouse Hotel, Sligo, 23rd March 2016 Woodquay Venue, Dublin, 30th March 2016 1 Comhairle Members Networking Events

More information

NATIONAL CHILDCARE CENSUS REPORT

NATIONAL CHILDCARE CENSUS REPORT NATIONAL CHILDCARE CENSUS REPORT BASELINE DATA 1999-2000 National Childcare Census Report Baseline Data 1999-2000 Number of Sessional and Full-day Care Facilities 1,500 1,200 Border, Midlands and Western

More information

Social Welfare Support. A guide for cancer patients

Social Welfare Support. A guide for cancer patients Social Welfare Support A guide for cancer patients Social Welfare Support A Guide for Cancer Patients This booklet gives information about social welfare support for cancer patients. If you have cancer

More information

THE HOME CARE SOLUTION:

THE HOME CARE SOLUTION: ManAgeing Table the Symptoms of Contents of Alzheimer s: The Home Care Solution An Introduction...3 Where to Begin to Find Home Care Services...4 What is Home Care?...4 When More Help Is Needed...4 The

More information

All Ireland Roundwood Production Forecast 2011-2028. Henry Phillips

All Ireland Roundwood Production Forecast 2011-2028. Henry Phillips All Ireland Roundwood Production Forecast 2-228 Henry Phillips All Ireland Roundwood Production Forecast 2-228 Henry Phillips COFORD Department of Agriculture, Fisheries and Food Agriculture House Kildare

More information

Active Retirement Ireland

Active Retirement Ireland Active Retirement Ireland Strategic Plan 2012 2014 Introduction Active Retirement Ireland (ARI) is a voluntary organisation for older people with a national membership of 23000 people and over 526 local

More information

The Procedures in Brief

The Procedures in Brief Revenue Complaint and Review Procedures Leaflet CS4 Introduction Revenue s Complaint and Review Procedures provide customers with an open and transparent mechanism for making a complaint and seeking a

More information

Health Status and Health Service Utilisation

Health Status and Health Service Utilisation An Phríomh-Oifig Staidrimh Central Statistics Office 31 August 2011 Fig. 1 Type medical cover held, Q3 2010 Both 6% Neither 23% Private Health Only 41% Medical Card Only 30% Published by the Central Statistics

More information

RESOURCES. Evolution Of Health Services And Health Policy In Ireland. Brian Harvey

RESOURCES. Evolution Of Health Services And Health Policy In Ireland. Brian Harvey RESOURCES Evolution Of Health Services And Health Policy In Ireland Brian Harvey Evolution Of Health Services and Health Policy In Ireland AUTHOR Brian Harvey is an independent social research consultant,

More information

RESIDENTIAL PROPERTY. Who is looking at Irish Property? FOCUS Q1 2014. Market Activity Buyer and Seller Profiles Cash Sales Prices and Rents

RESIDENTIAL PROPERTY. Who is looking at Irish Property? FOCUS Q1 2014. Market Activity Buyer and Seller Profiles Cash Sales Prices and Rents Savills World Research Ireland Residential RESIDENTIAL PROPERTY FOCUS Q1 214 Who is looking at Irish Property? Market Activity Buyer and Seller Profiles Cash Sales Prices and Rents savills.ie/reseach A

More information

Memory Clinics in Ireland

Memory Clinics in Ireland Memory Clinics in Ireland A Guide for Family Caregivers and Health Service Professionals 2nd edition Compiled by Associate Professor Suzanne Cahill, Vanessa Moore and Dr Maria Pierce in association with

More information

ATTENDANCE AT INTER-COUNTY SENIOR FOOTBALL AND HURLING GAA GAMES IN THE 21 ST CENTURY

ATTENDANCE AT INTER-COUNTY SENIOR FOOTBALL AND HURLING GAA GAMES IN THE 21 ST CENTURY ATTENDANCE AT INTER-COUNTY SENIOR FOOTBALL AND HURLING GAA GAMES IN THE 21 ST CENTURY John Considine Department of Economics University College Cork Abstract: An analysis of the attendance figure for inter-county

More information

Contents. 8 - How to Find the Course You Want3 18. National Learning Network 2. Welcome from the Director of Training and Employment, Rehab Group 3

Contents. 8 - How to Find the Course You Want3 18. National Learning Network 2. Welcome from the Director of Training and Employment, Rehab Group 3 Prospectus Contents National Learning Network 2 Welcome from the Director of Training and Employment, Rehab Group 3 About National Learning Network 4-14 National Learning Network - 15 - Certifications

More information

HealthProtect. Rules booklet. looking after you always

HealthProtect. Rules booklet. looking after you always HealthProtect Rules booklet Welcome to Laya Healthcare Thank you for choosing us to look after your healthcare cover. This rules booklet contains very detailed legal information about our HealthProtect

More information

ROAD COLLISION FACTS Údarás Um Shábháilteacht Ar Bhóithre Road Safety Authority

ROAD COLLISION FACTS Údarás Um Shábháilteacht Ar Bhóithre Road Safety Authority ROAD COLLISION FACTS 2008 Údarás Um Shábháilteacht Ar Bhóithre Road Safety Authority ROAD COLLISION FACTS IRELAND 2008 THIS REPORT IS BASED ON ROAD COLLISION INFORMATION PROVIDED BY AN GARDA SÍOCHÁNA Published

More information

Guiding Framework for the Implementation of Nurse and Midwife Prescribing in Ireland

Guiding Framework for the Implementation of Nurse and Midwife Prescribing in Ireland Guiding Framework for the Implementation of Nurse and Midwife Prescribing in Ireland November 2008 Changing practice to support service delivery Office of the Nursing Services Director FOREWORD It gives

More information

Summary of Workplace Injury, Illness and Fatality Statistics 2010-2011

Summary of Workplace Injury, Illness and Fatality Statistics 2010-2011 11 Summary of Workplace Injury, Illness and Fatality Statistics 2010-2011 Our vision: A national culture where all commit to safe and healthy workplaces and the safe and sustainable management of chemicals

More information

HIV in Ireland 2013 Report

HIV in Ireland 2013 Report HIV in Ireland 2013 Report HSE-Health Protection Surveillance Centre (HPSC) 25-27 Middle Gardiner Street Dublin 1 Ireland www.hpsc.ie May 2014 CONTENTS Acknowledgements... 3 Suggested citation... 3 Key

More information

An Introduction. to a Necessary & Rewarding Franchise Opportunity

An Introduction. to a Necessary & Rewarding Franchise Opportunity An Introduction to a Necessary & Rewarding Franchise Opportunity Home Instead Franchising Opportunities An ageing population has created an incredibly meaningful, unique and rewarding franchise opportunity.

More information

Mental Health Division Operational Plan

Mental Health Division Operational Plan Mental Health Division Operational Plan Our Service Priorities for System Wide Priority Areas Quality and Patient Safety Service User experience Preventing Health Care Associated Infections (HCAI) Medication

More information

A Portrait of. Published in partnership with. Published in 2014 by The Wheel 48 Fleet Street Dublin 2

A Portrait of. Published in partnership with. Published in 2014 by The Wheel 48 Fleet Street Dublin 2 A Portrait of Ireland s Non-profit Sector Published in partnership with Published in 2014 by The Wheel 48 Fleet Street Dublin 2 All rights reserved. No part of the publication may be reproduced, stored

More information

Working together to make a difference for children. Information for Parents. National Educational Psychological Service

Working together to make a difference for children. Information for Parents. National Educational Psychological Service Working together to make a difference for children Information for Parents National Educational Psychological Service Who are we? NEPS stands for the National Educational Psychological Service. It is a

More information

THE NEXT STEPS. Contacts and Resources. East & Midlands East

THE NEXT STEPS. Contacts and Resources. East & Midlands East THE NEXT STEPS Contacts and Resources Your Local Team Fáilte Ireland Dublin Fáilte Ireland East & Midlands Fáilte Ireland North West Fáilte Ireland South East Fáilte Ireland South West Fáilte Ireland West

More information

A Review of Practice and Audit of the Management of Cases of Neglect

A Review of Practice and Audit of the Management of Cases of Neglect A Review of Practice and Audit of the Management of Cases of Neglect Report on the Findings of the Pilot Phase of the National Audit of Neglect Internal Circulation within HSE at Discretion of National

More information

County Enterprise Centres Directory

County Enterprise Centres Directory Carlow County Enterprise Centres Directory Enterprise House Address: O'Brien Road, Carlow Telephone: 059 9130880 reception@carlow-ceb.com www.enterprisehouse.ie Cavan Killygarry Enterprise Centres (Phases

More information

A FRAMEWORK FOR MAJOR EMERGENCY MANAGEMENT APPENDICES

A FRAMEWORK FOR MAJOR EMERGENCY MANAGEMENT APPENDICES A FRAMEWORK FOR MAJOR EMERGENCY MANAGEMENT APPENDICES A FRAMEWORK FOR MAJOR EMERGENCY MANAGEMENT APPENDICES Contents Page Appendix F1 - The Principal Response Agencies 6 Appendix F2 - The National Steering

More information

Religious Practice and Values in Ireland A summary of European Values Study 4 th wave data

Religious Practice and Values in Ireland A summary of European Values Study 4 th wave data Religious Practice and Values in Ireland A summary of European Values Study 4 th wave data Eoin O Mahony Social Researcher, the Council for Research & Development September 2010 Table of Contents Introduction...2

More information