conditions
TABLE 8 Child population projections, by HSE administrative region and constituent counties (CSO, 2006)
HSE region & counties* 2006 2011 2016 2021
HSE West
Clare 28,565 30,278 32,035 32,835
Limerick 43,507 46,117 48,792 50,011
NorthTipperary 16,769 17,775 18,806 19,276
Galway 55,306 59,177 64,503 69,018
Roscommon 14,503 15,518 16,914 18,098
Mayo 30,969 33,136 36,119 38,647
Sligo 14,610 15,632 16,258 16,583
Leitrim 7,133 7,632 7,937 8,096
Donegal 40,288 43,108 44,832 45,729
Total 251,650 268,373 286,196 298,293
HSE South
Cork 11,6241 125,540 134,327 139029
Kerry 33,036 35,678 38,176 39512
Carlow 12,668 13,744 14,638 15004
Kilkenny 22,882 24,826 26,444 27101
SouthTipperary 21,162 22,960 24,453 25064
Waterford 27,009 29,304 31,209 31989
Wexford 34,851 37,813 40,271 41277
Total 267,849 289,865 309,518 318,976
HSE Dublin North-East
NorthCountyDublin 107,970 117,903 129,104 138,270
Louth 29,233 30,841 31,982 32,654
Meath 44,621 51,493 57,826 62,163
Cavan 17,127 18,069 18,738 19,131
Monaghan 14,455 15,250 15,814 16,146
Total 213,406 233,556 253,464 268,365
HSE Dublin Mid-Leinster
SouthCountyDublin 153,131 167,219 183,105 196,105
Kildare 50,337 58,089 65,234 70,126
Laois 18,013 19,814 21,063 21,315
Longford 8,930 9,823 10,442 10,567
Offaly 19,169 21,086 22,414 22,683
Westmeath 21,124 23,236 24,700 24,997
Wicklow 32,425 37,418 42,021 45,172
Total 303,129 336,686 368,979 390,967
NATIONAL TOTAL 1,036,034 1,120,528 1,218,157 1,276,600
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.
•
TheACTrecommendationthatapproximately50%ofallchildrenwithalife-limiting condition will need active palliative care at any one time is also accepted as applicabletotheIrishenvironment.•
Allchildrenclassifiedashavingan‘activepalliativecarerequirement’willbenefit fromandwillrequiresomeformofrespitecare,althoughsomechildrenwithlife-limitingconditionsaccessrespitecarethroughservicesotherthanpalliativecare, 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.
TABLE 9 Projected need for respite services, 2011-2021, by HSE administrative region and constituent counties
HSE West
Clare 28,565 41 22 23 24
Limerick 43,507 63 33 35 36
NorthTipperary 16,769 24 13 14 14
Galway 55,306 80 43 47 50
Roscommon 14,503 21 11 12 13
Mayo 30,969 45 24 26 28
Sligo 14,610 21 11 12 13
Leitrim 7,133 10 6 6 6
Donegal 40,288 58 31 33 33
Total 251,650 365 195 207 216
HSE South
Cork 116,241 169 91 97 101
Kerry 33,036 48 26 28 29
Carlow 12,668 18 10 11 11
Kilkenny 22,882 33 18 19 20
SouthTipperary 21,162 31 17 18 18
Waterford 27,009 39 21 23 23
Wexford 34,851 51 27 29 30
Total 267,849 388 210 224 231
HSE Dublin North-East
DublinNorth 107,970 157 78 94 100
Louth 29,233 42 21 23 24
Meath 44,621 65 32 42 45
Cavan 17,127 25 12 14 14
Monaghan 14,455 21 10 11 12
Total 213,406 310 168 184 195
HSE Dublin Mid-Leinster
DublinSouth 153,131 222 111 133 142
Kildare 50,337 73 36 47 51
Laois 18,013 26 13 15 15
Longford 8,930 13 6 8 8
Offaly 19,169 28 14 16 16
Westmeath 21,124 31 15 18 18
Wicklow 32,425 47 24 30 33
Total 303,129 440 243 268 283
NATIONAL TOTAL 1,036,034 1,503 816 883 925
HSE region &
constituent counties*
Child (2006pop.
Census)
Children with life-limiting
conditions 2011 2016 2021 Children with active palliative care needs
*CountiesDublinandTipperaryaresplitintwobyHSEregionboundaries
Identifyingthegapbetweensupplyanddemandinrelationtorespiteserviceshasbeenchallenging, ascomprehensiveinformationregardingthelocationandtypeofrespitecarecurrentlybeingprovided isnotavailable.Therefore,thisrespiteneedsassessmentfocusesonprojectingthetotal needfor respiteservicesfortheperiodupto2021,includingthosewhicharealreadyinplace.Whererespite servicesarealreadyprovided(bydisabilityservices,forexample)itisenvisagedthatthiswillcontinue.
Figure6providesagraphicillustrationoftheprojectedyear-by-yeargrowthinthenumbersof childrenwithlife-limitingconditionswhoarelikelytorequireactivepalliativecareovertheperiod 2011-2021ineachHSEregion.