claiming disability living...

A GUIDE FOR CHILDREN

UNDER 16 WITH CROHN’S OR COLITIS

CLAIMING DISABILITY LIVING ALLOWANCE

ABOUT THIS GUIDE

CLAIMING DLA FOR CHILDREN UNDER 16 - 2018

Crohn’s & Colitis UK 1BishopSquare,Hatfield,Herts,AL109NE

01727 830 038 www.crohnsandcolitis.org.uk

Editions1-4ofthisguidewerewrittenbySteveDonnison&HolidayWhitehead:

[email protected] www.benefitsandwork.co.uk

Whilecopyrightinthecontextofthispublicationbelongstotheauthors, Crohn’s&ColitisUKhastheright,astheauthors’exclusivelicensee,tomakeitavailabletopeoplewithCrohn’sandColitis,healthprofessionalsandbenefitsadvisersassistingpeoplewithCrohn’sandColitis.

Whileeverycarehasbeentakentoensurethatthecontentofthisworkisaccurateatthedateofpublication,noliabilityinrespectofsuchcontentoranyomissioninthisworkisorwillbeacceptedbyanyoftheauthorsorbyCrohn’s&ColitisUK.

PLEASE NOTE:DLAforChildrenisabenefitandsubjecttochange.Thisguideisnotafullandauthoritativestatementofthelaw.Theinformationinthisguideisintendedasgeneralinformationonlyandisnotintendedtoberelieduponbyanyindividualinrelationtotheirspecificcircumstances.Itisnotintendedasareplacementforappropriateprofessionaladvice.

© Crohn’s & Colitis UK 2018 Claiming DLA for Children Under 16 Edition 5 Last review: March 2018 Next planned review: 2021

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CONTENTS

WhatisDLA? 2

Ismychildeligible? 3

HowisDLAworkedout? 4

Glossary 5

Beforeyoubegin 6

Startyourclaim 7

Generaltipsforcompletingtheclaimform 8

Howtoexplainfluctuatingconditions 9

Completingtheclaimform 10

Questions1–18:Aboutthechild 10

Questions22–24:Aboutthechild’sillnessesordisabilities 12

Questions25–36:Mobilityquestions 13

Questions37–53:Carequestions 15

Questions54–55:Extrainformationaboutcare 35

Questions56–68:Aboutyou 36

Theimportanceofsupportingevidence 37

Whathappensnext 38

Preparingforamedical 38

Thedecision 40

Help,SupportandInformation 41

Appendix1.Two–minuteDLAtestforchildren 43

Appendix2.Claimfilerecordsheet 45

Appendix3.Medicalvisitrecordsheet 47

Appendix4.Healthprofessional’ssheet 48

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WHAT IS DLA?

DisabilityLivingAllowance(DLA)isabenefitforchildrenunder16thatcanhelpwithanyadditionalcostsrelatedtoadisability,illnessorhealthcondition.

WHY CLAIM DLA? Evenifyoudon’tconsideryourchildtobedisabled,iftheyhaveInflammatory

BowelDisease(IBD),youmayhaveextraexpenses.Forexample,higherheatingbills,specialdiets,taxifaresandmorelaundrycosts.DLAcanhelptomeettheseextracosts,butyoucanspendDLAonanythingyouwish,notjusttheextra expensecausedbyillness.Somepeopleusetheirchild’sDLAtoprovidetreatsandholidaysandothersputitawayinasavingsaccountfortheirchildtousewhentheyareolder.

MakingaclaimforDLAonbehalfofachildcantakemanymonthsandsomepeoplecanfindtheprocessemotionallydraining.Thisguidewilltakeyouthroughtheprocessstep–by–step,fromgettingacopyoftheclaimformthroughtogettingtheresultofyourapplication.

WestronglyrecommendthatyoureadtheHelp, Support and Information sectionandthinkaboutwhatsupportyoucanarrangebeforeyoustartyourclaim.

APPENDICES Attheendofthisguide,we’veincludedfourappendiceswiththefollowing

informationtohelpsupportyourclaim:

Two–minute DLA test for children.Aquickandeasywayforyoutodecidewhethertofilloutaclaimformonbehalfofyourchild.

Claimfilerecordsheet.ThisisfornotingdetailsofanylettersandphonecallstoandfromtheDepartmentforWorkandPensions(DWP).Itisintendedtoformpartofyourclaimfile,whichwestronglyrecommendyoukeep.See Before you begin, onpage6,forfurtherdetails.

Medical visit record sheet.ThisisforyoutofilloutifyourchildhasaDWP medical.Formoreaboutthis,see Preparing for a medical onpage38.

Health professional’s sheet.Readthisthroughcarefully,alongwiththesection,The importance of supporting evidence onpage37,beforecontactingyourchild’shealthcareprofessionalsforlettersofsupport.

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IS MY CHILD ELIGIBLE?

WHAT MATTERS? Health problem: Yourchildmusthavehadalong–termhealthproblem,suchas

Crohn’sDiseaseorUlcerativeColitis,foratleastthreemonths,andbeexpectedtohaveitforatleastanothersixmonths.Thehealthproblemmustresultin yourchildneedingmuchmorecareorsupervisionthanotherchildrenofthesameage.

Age:Ifyourchildisunder16youcanmakeaclaimforDLAontheirbehalf.Iftheyare16orover,theycanclaimPersonalIndependencePayment(PIP)themselves.

YoucanclaimDLAforyourchildatanytime,buttherearesomeagerestrictionsregardingwhatcanbepaid. See How is DLA worked out?onthenextpage.

Residence and presence:YourchildmustsatisfycertainresidenceandpresencequalificationstoqualifyforDLA.TheymustbelivinginGreatBritain,Northern Ireland,theChannelIslandsortheIsleofManatthetimeofclaimingDLAandhavebeenthereforasetperiodoftime.Howlongwilldependonyourchild’sage:

• childrenundersixmonthsmusthavebeenresidentforatleast13weeks

• childrenagedsixmonthstothreeyears,foratleast26weeks

• childrenoverthree,foratleasttwooutofthepreviousthreeyears.

Ifyouaresubjecttoimmigrationrestrictions,youshouldseekadvicebeforemakingaclaimforDLA,oranyotherbenefits.The Help, Support and Information sectiongivesdetailsoforganisationsthatmaybeabletohelpwiththis.

WHAT DOESN’T MATTER? About your child:Itdoesn’tmatterifyoudon’tconsideryourchildtobe

‘disabled’.ForthepurposesofDLA,‘disabled’meansthatyourchildhasa long–termchronicillnessthatadverselyaffectstheireverydayactivities.

Italsodoesn’tmatterifyou’vebeentoldbyanyone(includingtheDWP,yourGP,anurse,socialworker),otherthanaprofessionalwelfarerightsworker,nottomakeaclaimbecauseyourchildisnotillenough.Ifindoubt,makeaclaim.Yourchildwillnotbe‘registereddisabled’iftheyreceiveDLAanditwillnotmakeitmoredifficultforthemtogetajobwhentheybecomeanadult.

About you (and your family):WhenconsideringwhethertoawardDLA,theDecisionMakerisonlyinterestedinyourchildandthewaytheirhealthproblemsaffectthem.DecisionMakersareDWPstaffwhomakedecisionsaboutclaims.Yourcircumstancesarenottakenintoaccountinanyway.

So,itdoesn’tmatterif:

• you’reworking

• you’reunemployed

• yourpartnerworks

• youdon’thaveapartner

• you’veneverpaidNationalInsurancecontributions

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• you,oranyoneelseinyourfamily,isclaiminganyotherbenefits (suchasEmploymentandSupportAllowance,UniversalCredit,PIP,DLA, IncomeSupportorJobseekersAllowance)

• youhavesavingsofanyamount.

Ifyou’restillunsurewhethertomakeaclaim,tryourTwo–minuteDLA test for children (Appendix1)whichcanbefoundatthebackofthisguide.

HOW IS DLA WORKED OUT? DLAhastwocomponents–thecarecomponentandthemobility

component.Achildmaybeawardedoneorbothatthesametime. IfyourchildisawardedDLA,youmaybeentitledtomoremoney fromotherbenefitsthatyouclaim.TheHelp, Support and Information sectiononpage41listsorganisationsthatmaybe abletoofferadvice.

CARE COMPONENT Thecarecomponentispaidifyourchildisatleastthreemonthsoldandneeds

lookingafterorhelpwiththeirpersonalcare,morethanachildofthesameagewithoutadisability(evenifthey’renotgettingthishelpatthemoment).

Thecarecomponentcanbepaidatoneofthreeweeklyrates,dependingontheamountofextrahelpyourchildneeds:

Lowest £22.65Yourchildneedshelpwithpersonalcareforatleastanhour,onmostdays.Thishelpcanbespreadoutthroughouttheday.

Middle £57.30

Yourchildneeds:

• helpwithpersonalcareseveraltimesthroughouttheday, or

• frequentorregularsupervisionthroughoutthedaytoavoiddanger,or

• needshelpwithpersonalcareatleasttwiceanight,oronceforatleast20minutes, or

• someonetobeawaketowatchoverthematleasttwiceanight,oronceforatleast20minutes.

Highest £85.60Yourchildhascareneeds(asdescribedforthemiddlerate)duringthedayand duringthenight.

Pleasenotethesearetheproposedratesfor2018/19.Forthelatestrates,seewww.gov.uk/disability-living-allowance-children/rates

Themaincarerofachildawardedthemiddleorhigherrateofthecare componentofDLAmaybeabletoclaimCarer’sAllowance.Seekspecialistadvicefromtheorganisationslistedonpages41–42.

http://www.gov.uk/disability-living-allowance-children/rates

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MOBILITY COMPONENT Themobilitycomponentispaidifyourchildneedsextrahelporsupervision

gettingaround,morethanachildofthesameagewithoutadisability.Themobilitycomponentcanbepaidatoneoftwoweeklyrates,dependingontheamountofextrahelpyourchildneeds:

Lower £22.65Yourchildisaged 5 or over,canwalkbutneedssomeonetoeithersuperviseorguidetheminplacestheyareunfamiliarwith.

Higher £59.75

Yourchildisaged 3 or over,andisunabletowalkor‘virtually unabletowalk’.Thisisoftentakentomeanchildrenwhocannotwalkmorethan50yardsatareasonablepacewithoutpain,fatigueorbreathlessness.

Pleasenotethesearetheproposedratesfor2018/19.Forthelatestrates,seewww.gov.uk/disability-living-allowance-children/rates

AparentorguardianofachildawardedthehigherratemobilitycomponentofDLAmaybeentitledtoaBlueBadge,oracarundertheMotabilityScheme.Seekspecialistadvicefromtheorganisationslistedonpages41–42.

GLOSSARY Herearesomeofthetermsusedintheclaimformandwhattheymean:

Aids and adaptions:Anydevicethatisusedbyyourchildtoimproveorhelpanimpairedmentalorphysicalfunction.

• Aidsincludeincontinencepads,commodes,buggiesandlearningaidssuchas computerprogrammes.

• Adaptationsincluderailsandotheralterationstothehome.

Danger: Asituationwhereyourchildhasaseriousriskofharmingthemselvesorothers.Thissituationmayariseinfrequentlyorbeaone–off.

Extra help:Whenyourchildneedsmorehelporsupportthanachildofthesameagewithoutadisability.

Guide: Someonepresenttophysicallyleadorverballydirectyourchildtopreventanyaccidentsorharm.

Night:Beginswheneveryoneinthehousegoestobed(includingtheadults)andendswheneveryonegetsup.

Personal care:isanythingcarriedoutinconnectionwithbodilyfunctions–whichincludesdressing,washing,bathing,toileting,eating,drinking,takingmedicinesandgettinginandoutofbed.

Supervise: Someonecontinuouslypresentwithyourchildtopreventany accidentsorharm,and/orprovideencouragementorprompting.

http://www.gov.uk/disability-living-allowance-children/rates

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BEFORE YOU BEGIN Beforeyoubeginyourclaim,westronglyrecommendyoudo

twothings:

1. KEEP A CLAIM FILE Aclaimfileissimplyafolderinwhichyoukeepnotesandcopiesofeverythingto

dowithyourDLAclaim.

Whattoputinyourclaimfile:

AphotocopyofeverythingyousendtotheDWP

Mostimportantly,keepaphotocopyofyourcompletedclaimform.Itmaybe difficultandexpensive,butisimportantbecause:

The DWP may lose the claim form – it does happen.

Ifyourchild’sclaimissuccessful,theawardwilleitherbeforalimitedperiod,forexamplethreeyears,oritwillbeawardeduptoyourchild’ssixteenthbirthday.WhenyoureapplyforDLA(orPIPifyouchildturns16)you’llhavetofillout anotherclaimform.Ifyoudon’tgiveasmuchdetailasyoudidintheoriginal,theDWPmaydecideyourchildisgettingbetterandstoptheaward.

Ifyou’renothappywiththeresultoftheclaim,youwillhavedifficultychallengingthedecisioneffectivelywithoutacopyofyouroriginalform.

Keep every letter you receive from the DWP

Filethelettersindateorder,alongwithcopiesofanylettersyou’vesenttoDWP.ThismayhelpifthereisanissueandyouneedtorequestthatyourDLApaymentbebackdatedtothebeginningofyourclaim.

Keep a note of any phone calls to or from the DWP

Askforthenameofanyoneyouspeaktoandkeepanoteofit,alongwiththedateandthesubject.Forexample:

16.11.18 – Spoke to Gemma Watson at the DLA Unit. She said they have received my consultant’s letter.

Don’tfeelembarrassedaboutthis.Intheveryunlikelyeventthatanyonerefusestogiveyoutheirfirstnameandthesectiontheyworkon,insistonspeakingtotheirsupervisor.YoucanusetheClaimfilerecordsheet(Appendix2)torecordyourinteractionswithDWP.

2. ARRANGE SUPPORT MakingaclaimforDLAcanbehardworkmentallyandemotionally.Itmayall

gosmoothlyforyou,oryoumayfinditadifficultanddrawnoutprocess.We recommendyouusetheHelp, Support and Information sectionbeforeyoustartyourclaim.

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START YOUR CLAIM Thefirststepinmakingaclaimistogetaclaimform.Thebestway

todothisis:

For England, Scotland and Wales:

CalltheDisability Living AllowanceHelplineon0800 121 4600 (8amto6pm,MondaytoFriday).

Textphone:0800 121 4523.

For Northern Ireland:

CalltheDisability andCarers Serviceon0800 587 0912 (9amto5pm,MondaytoFriday,exceptBankHolidays). Textphone:028 9031 1092.

Note:TheScottishgovernmentisintroducinganewsocialsecuritysystemsoDLAmaychangeforthoseinScotlandinthefuture.

Whenyoumakethecall,askthemtosendyouaDLAclaimformforachild under16.If,afteraskingyouafewquestions,theoperatorsuggestsyouwon’tbe eligibletoclaimDLAforyourchild,insistthattheysendyouaformanyway.

Askforthefullname,orfirstnameanddepartment,ofthepersonyouspeakto.Makeanoteofit,alongwiththedate,inyourclaimfile.Ifyoudon’treceiveaclaimform,youshouldbeabletogetonebackdatedtothedayofyour originalcall.

Youshouldreceiveaclaimformwithtwodatesstampedonit.Thefirstisthedateyouaskedfortheform,thesecondissixweekslater.YourclaimwillstartfromthefirstdateaslongastheDWPreceivetheformbytheseconddate.RemembertoallowseveraldaysfortheformtoreachDWPbypost.Iftheyreceiveitafterthesixweeks,yourclaimisstillvalid,butitonlystartsfromthedatetheDWPreceiveyourcompletedform,insteadofthedateyoufirstaskedfortheform.

Theformshouldarrivein7–10days.Inthemeantime,youmaywishto:

• keepadiary–seeThe importance of supporting evidence onpage37

• writealistofpeoplewhocanprovidesupportingevidence–see The importance of supporting evidence onpage37

• makeappointmentstoseeyourchild’shealthprofessionals.Workoutwhen youarelikelytohavecompletedtheform,andaskforanappointmenttotake placesoonafterwards.

Youcanalsogetaclaimformonlineatwww.gov.uk/disability-living- allowance-children/how-to-claim(forEngland,ScotlandandWales)or www.nidirect.gov.uk/articles/disability-living-allowance-dla (forNorthernIreland).Youmaywishtodownloadacopyandbegindraftingroughanswerstothequestions.

Ifyoudownloadaclaimformorgetonefromelsewhere,forexamplefromanadviceagency,itwon’tbedate–stampedandyourclaimwillstartwhentheDWPreceivesyourcompletedform.

http://www.gov.uk/disability-living-allowance-children/how-to-claim

http://www.gov.uk/disability-living-allowance-children/how-to-claim

http://www.nidirect.gov.uk/articles/disability-living-allowance-dla

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WHEN THE FORM ARRIVES Pleasedon’tbeputoffbythesizeoftheclaimform–wewillhelpyoueverystep

oftheway.Ifyouhavereceivedadate–stampedform,you’vegotoveramonthtocompleteit,dependingonhowlongtheDWPtooktopostitouttoyou.Beforeyoustart,pleasereadthenextsection.

GENERAL TIPS FOR COMPLETING THE CLAIM FORM ThedecisionaboutwhethertoawardDLAisbasedonevidence.Theformyouare

abouttocompleteisevidence,andsoareyourdiaryandanylettersfromdoctors,carersorrelatives.

Aneffectiveclaimincludesevidencethatisasclearandasdetailedaspossible.ThisisparticularlyimportantforCrohn’sDiseaseandUlcerativeColitis,becausetheyarenotwidelyunderstoodconditions.Pleasetakethetimetofillintheforminasmuchdetailasyoupossiblycan.Ifyoudon’tknowwheretowritesomething,writeitunderanyquestionthatappearsrelevant,evenifitmeanswritingitontheformseveraltimes.

Manyclaimsarerejectedbecausetherewasn’tenoughevidenceforthebenefittobeawarded.Ifyoudon’tfillintheclaimformfullyandhavetoappeal,youwillhavetoexplaintothetribunalwhyyouarenowsayingthatyourchildhasproblemsthatyoudidn’tmentioninyourclaimform.

Whenyou’refillingouttheDLAformyoudon’tneedtoworryaboutspelling, punctuation,grammarorstayinginsidetheboxes.Dowhateverworksbestforyou,includingany,orall,ofthefollowing:

• writeinnoteform

• writeinbulletpoints

• writeoutsidetheboxesandupthesideofthepageifyoucan’tfiteverything insidetheboxes

• writeonadditionalsheetsofyourownpaper.Ifyoudo,alwayswriteyour child’sname(andNationalInsurancenumberifyouknowit)acrossthetopof eachextrasheet,givethepagenumbersofthequestionsyou’reanswering andfastenthesheetsecurelytothelastpageofthesectionyou’recompleting.

Westronglyrecommendkeepingadiaryforatleastaweek,or2–3weeksifyourchildexperiencesfluctuatingsymptoms,beforeyoufillintheform.Thiswillhelpyoudeterminehowlong,howoftenandhowmanytimesyourchildneedshelp.Thisisparticularlyimportantiftheamountofhelpyourchildneedsvaries–seeHow to explainfluctuatingconditions below.Youcansendthediaryasevidencewithyourclaimform.You’llfindanexampleofadiaryintheclaimform.

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HOW TO EXPLAIN FLUCTUATING CONDITIONS ExplainingthefluctuatingnatureofCrohn’sDiseaseorUlcerativeColitisisa

challengewhenclaimingDLA.Someagenciesmayadviseyoutocompletetheclaimformthinkingonlyofhowyourchildisonbaddays.However,Crohn’sandColitisareknowntobefluctuatingconditions,soifyoupresentyourchild’sconditionasunvaryingthismaymakeyourevidencelessbelievable.If,ontheotherhand,theirconditionactuallydoesn’tvary,thengooutofyourwaytoexplainthisontheclaimform.

IfyourchildisnotawardedDLAandyouchoosetoappearbeforeatribunal,theyarelikelytoaskyoutogobackthroughthelastweek,day–by–day,explainingindetailthedifficultiesyourchildhad.Ifthepreviousweekwasoneofyourchild’sbetterweeks,itmaybehardertoconvincethetribunalofthedifficultiesyourchildfacesandtheappealmayfail.

So what do we advise you do?

Wesuggestthatyouexplainhowyourchildisontheirbaddaysandthenhowtheyareontheir‘betterdays’.Ifyouuseexpressionslike‘gooddays’or‘normaldays’itwillbeassumedthatthesearedaysonwhichyourchildhasnoproblemswhatsoever. Forexample:

On bad days Simon cannot get out of bed at all because of fatigue and pain in his large joints and back. On better days he can get out of bed, but only slowly and painfully, resting several times. The pain is in his … (etc.)

Ifyourchildhasveryfew(orno)dayswhentheycangetoutofbedeasilyandwithoutpainthenyoucanreasonablysaythattheyneedhelpsevendaysaweek.

Becarefulnottounderestimateyourchild’scondition.Aretheir‘betterdays’actuallyfreeofpainanddiscomfort,orjustrelativelysobytheirstandards?Itmaybethat,forthepurposesofclaimingDLA,youhavetoacceptthatyourchilddoesn’thaveany‘gooddays’atall–theyhavejustlearnttodealpositivelywiththeircondition.Havingtothinkaboutthismaybeupsetting,sopleasemakesurethereissomeoneavailabletoofferyousupportifyouneedit.

Ifyourchildhasperiodswhentheyaresymptom–free,thenaveragethemoutasfollows:

If your child’s condition varies from day to day,decideonaveragehowmanysymptom–freedaysaweektheyhave.Ifit’sonlyoneortwo,thentheyneedhelpfiveorsixdaysaweek.Iftheyneedhelpforfewerthanfourorfivedaysaweek,itislesslikelytheywillbeawardedDLA.

If your child’s condition varies from week to week, againaverageitout.Iftheyhaveaboutonegoodweekamonth,that’sabitlessthanaquarterofthetime,sotheystillneedhelp,onaverage,everyfivetosixdaysaweek.

If your child’s condition varies from month to monthandtheyhavelongperiodsofremissionthenyoushoulddecidewhethertheyhavenoproblemsduringtheperiodsofremission,orwhethertheystillsufferfromsymptomssuchaspain,discomfort orfatigue.

Inordertoqualifyforthefirsttime,yourchild’sconditionneedstohavelastedforthreemonthsandbelikelytolastatleastanothersixmonths.Afterthat,ifyourchildhasaperiodofremissionandtheirclaimisstopped,then,aslongastheyclaimagainwithintwoyears,theydon’thavetoserveanotherthreemonthqualifyingperiodandcanclaimassoonastheirconditiondeteriorates.

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COMPLETING THE CLAIM FORM Somepeopleprefertofillintheclaimformwithapencilfirst,whereasotherpeople

willjustgetstuckin–it’suptoyou.Youmaywishtophotocopytheclaimformandpracticefillingitinfirst.WewilltakeyouthrougheachpartoftheDLAclaimformpage–by–page,soyouwillneedtheformopeninfrontofyou.Itmightbehelpfultoreadtheformallthewaythroughbeforeyoubegin.

PleasenotethatthequestionsintheclaimformforNorthernIrelandaredifferent.TheNIDirectwebsitehasmoredetailatwww.nidirect.gov.uk/publications/ disability-living-allowance-dla-adult-and-child-claim-forms-and-guidance- notes-dla-1a

QUESTIONS 1–18: ABOUT THE CHILD Thesearestraightforwardfactualquestions,somejustneedinga

simpleyesornoanswer.

Q1 Surname or family name, other names in full

Q2 Child reference number (if you know it) Thisisyourchild’sNationalInsurancenumber.Don’tworryifyoudon’tknowit,

oryourchilddoesn’thaveoneyet.TheirNationalInsurancenumberwillbefound,orassigned,aspartoftheclaimprocessandprintedonanylettersrelatingto theclaim.

Q3 Date of birth

Q4 Sex

Q5 Full address where the child lives

Q6 Are you claiming for the child under special rules? Thesespecialrulesareforchildrenwhoareterminallyillandnotexpectedtolive

longerthansixmonths.

Q7 What is the child’s nationality?

Q8 Does the child normally live in Great Britain? IfyourchilddoesnotnormallyliveinGreatBritain,oriftheyhavebeenabroadfor

alongperiod,thismayaffecttheirentitlementtobenefits.Ifthisprovestobea problem,getadvicefromoneoftheagencieslistedintheHelp, Support and Information section.

Q9 Has the child been abroad for more than 4 weeks at a time in the last 3 years?

http://www.nidirect.gov.uk/publications/disability-living-allowance-dla-adult-and-child-claim-forms-and-guidance-notes-dla-1a



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Q10 EntitlementtootherbenefitsfromanotherEuropeanEconomicArea (EEA) State or Switzerland

Q11 EntitlementtootherbenefitsfromanotherEEAStateorSwitzerland

Q12 Is the child in a hospital or hospice now, or have they been admitted in the past 12 months?

Q13 Is the child in a residential college or similar place now, or have they been in the past 12 months?

Q14 In the last 12 months, has the child seen anyone apart from their GP about their illnesses or disabilities?

Itisimportanttogivethenamesandaddressesofalltheprofessionalsyourchildhasseeninthepast12months.Ifthereismorethanone,makesureyouaddtheextrainformationinquestion70.

Q15 Name of the child’s GP Trytoincludethefulladdressofyourchild’sGP.Youshouldletyourchild’sGPknow

youaremakingaclaimastheDWPmaywritetothemforfurtherinformation.

Q16 Has the child had or are they waiting for tests to help diagnose, treat or monitor their illnesses or disabilities?

Ifyoudonotknowtheexactdateofanytest,putanapproximatedate.

Q17 Do you have any reports, letters or assessments about the child’s illnesses or disabilities?

Ifyouhaveanyhelpfullettersorreportsaboutyourchild’sconditionthatwillsupporttheclaim,sendacopywiththeclaimform.

Assessmentreportsmayprovideveryusefulinformationaboutthedifficultiesyourchildhaswitheverydayactivities.Pleasebearinmindthatyouarenotobligedtosubmitthesereports.Readthroughanyletterorreportyouareconsidering submitting.Ifyoudecidethat,forexample,yourchild’scareplansetsoutan unreasonablyoptimisticassessmentofhowwelltheyarelikelytoprogress,thenyoumaydecideyoudonotwishtosubmitit.YoushouldalsobeawarethattheDWPmayobtainacopyoftheassessmentdirectlyfromwhicheverorganisationcarrieditout.

Q18 Name of the child’s school or nursery The‘personwecancontact’shouldbethepersonwhoknowsthemostabouthow

yourchildisaffectedbyIBD.

Q19 Does the child have or are they waiting to hear about an Individual Education Plan (IEP), Individual Behaviour Plan (IBP) or a statement of Special Educational Needs (a statement)? In Scotland the statement is called a Co–ordinated Support Plan (CSP).

MakesureyoutickaboxifitisrelevantasthiskindofinformationcanoftenbehelpfulinsupportingaclaimforDLA.

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Q20 Statement from someone who knows the child Ifpossiblethepersonwhocompletesthisstatementshouldbeaprofessional

involvedinyourchild’scare,forexample,theirspecialistdoctor,nurseorGP.

Photocopythesheettogivetothepersonyouwanttocompleteit.Makean appointmenttoseethepersonsoyoucanansweranyquestionstheymighthaveandtakethecompleted Health professional’s sheet(Appendix4)atthebackofthisguidewithyou.Askthemtocompletethestatementthereandthenifpossible.Iftheycan’t,orwishtowritealongerreport,askthemtosendittoyouandtellthemwhenyouneedtohaveitby.Ifyouarehappywithwhattheywrite,attachthesheettoyourform.Ifnot,givethemanotherblankcopyandaskifitwouldbepossibletochangewhattheyhavewritten.Ifthisisnotpossible,getsomeoneelsetofillinthe statementinstead.Don’tdelayreturningtheclaimformifyoudon’treceivea statementintime,sendanyadditionalevidenceafterwardsifnecessary.

Q21 Consent Don’tforgettosignanddatetheconsent.YoushouldgiveconsenttotheDWPto

contactthepeoplenamedontheformunlessyouhaveaverygoodreasonnotto.

Pleasemakesureyoualsosignanddatethedeclarationatquestion71.

QUESTIONS 22–24: ABOUT THE CHILD’S ILLNESSES OR DISABILITIES

Q22 List the child’s illnesses or disabilities in the table below Listall yourchild’shealthproblems,notjustCrohn’sorColitis,includinganyrelated

problemssuchasarthritis,anaemiaandskinproblems.Alsolistanyconditionsthatmaynotberelated,suchasasthma.Includeanyemotionalormentalhealthproblems,suchasdepressionoranxiety.Yourchild’sentitlementtoDLAisbasedonthecombinedeffectsofALLtheirhealthproblems,somakesureyouwritethem alldown.

What treatment do they have? How often do they have treatment? Ifyouhaveacopyofaprescription,includeitwiththeclaimform.Althoughthe

questiononlyreferstoprescribedmedicationandtreatments,youmayalsowishtolistanyalternative,complementaryornon–prescriptionmedicationortreatmentsyourchildtakes.Continueonaseparatesheetifnecessary.

Q23 Does the child use, or have they been assessed for, any aids or adaptations?

Ifyourchildusesanyspecialistequipment,writethisinthetableandexplainwhathelptheyneedtousetheequipment.

Q24 When the child needs help Onlytick‘varies’ifyourchild’sneedsclearlyvary,andexplainwhytheyvary.Itmay

behelpfultoreadthesectionHowtoexplainfluctuatingconditions onpage9ofthisguidebeforecompletingthisquestion.Werecommendyouusetheterms‘betterdays’and‘baddays’.Asageneralguide,iftheyneedhelplessoftenthanfourorfivedays/nightsaweektheywillbelesslikelytoqualifyforDLA.

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QUESTIONS 25–36: MOBILITY QUESTIONS

Q25 Can they physically walk? Ifyourchildisunabletowalk,tick‘no’andgotoquestion36.

Q26 Dotheyhavephysicaldifficultieswalking? Ifyoutick‘yes’,moveontoquestion27.

Q27 Please tick the boxes that best describe how far they can walk without severe discomfort and how long it takes them

Trytimingyourchildratherthanjustguessing.Rememberthisisanaverage,sotakeintoaccountyourchild’sbaddays.

Thereisnodefinitionofseverediscomfortexceptthatthelawsaysitislessthanseverepain.Canyourchildwalkatallontheirbaddays?Aretheyinsevere discomfortallthetimewhentheywalk,ordoesitbeginafteracertaindistance?Ifpossible,measurehowfartheycanwalk,ratherthantryingtoestimate.Ifyoufinditdifficultandcannottickabox,explainthereasonwhyinquestion31.

Q28 Please tick the box that best describes their walking speed Ifthisvaries,explainwhyinquestion31.

Q29 Please tick the box that best describes the way they walk

Q30 Does the effort of walking seriously affect their health? Iftheansweris‘yes’explainwhy.Forexample,walkingcausesextremefatigueand

yourchildisunabletodoanythingelsefortherestoftheday.

Q31 Anything else you want to tell us Doesyourchildhavedifficultieswithwalkingbecauseofjointpainand

stiffness,abdominalpain,fistulas,sorenessaroundtheanus,extremefatigue,breathlessness,increasedlikelihoodofincontinence,oranyotherphysicalproblem?

Isyourchildconfinedtobedformostofthetimeandseldomabletowalkoutdoors?Doesyourchildwalkmuchmoreslowlythanotherchildrenofthesameage?Doesyourchilduseabuggyalthoughotherchildrenofthesameagedonot?

Giveasmuchinformationasyoucan.Forexample,howcanyoutellwhenyourchildisbecomingexhaustedorisinseverediscomfortorpain?

Ifyourunoutofspace,writeyourextrainformationinquestion35oronasheetandattachtotheclaimform.

Q32 Do they need guidance or supervision most of the time when they walk outdoors?

Ifyourchildneedsguidanceorsupervisionoutdoors,tickYesatthetopofthepageandthenticktheboxesthatapplytoyourchild.Youcanexplainwhytheyneedthishelpinquestions34and35.

14

Evenifyourchildissoyoungthatyouwouldnotallowthemtowalkoutdoorsin unfamiliarplacesontheirown,iftheyneedmuchmorehelpandsupportthan anotherchildofthesameagetheymaybeeligibleforlowerratemobility.

Onlytick‘no’ifyouhavereadtheexamplesontheformandreadtheboxbelowanddecidedyourchilddoesn’thaveanysuchproblems.

Q33 Do they fall due to their disability?

Q34 & If you want to tell us why you have ticked the boxes, how their needs vary or anything else you think we should know, use the box below. If you want to tell us anything else about their mobility, use the box below.

Explainwhyyourchildneedsguidanceand/orsupervisionwhenwalkingoutdoors.Remember,thisisaboutwhenyourchildisinanunfamiliarplace,notplacesthattheyknowwell.Ifyourunoutofspace,useanextrapieceofpaperandattachittotheclaimform.

Step 1 Say what problems your child has with this activity, giving examples if you can.

Doesyourchild:

• runoutofenergy,oftenquitesuddenly

• carryonwalkingeventhoughtheyareexhausted

• experiencepainwhenwalking,perhapsbecauseofarthriticsymptoms,asore anus,fistulasorabdominalpains?

Ifyourchilddoesn’twalkoutdoorsaloneinunfamiliarplacesbecauseof‘fearoranxiety’relatedtotheirphysical(ratherthanmental)health,thiswillnotentitlethemtoanawardoflowerratemobility.Forexample,ifyourchilddoesn’tgotounfamiliarplacesalonebecausetheyareafraidofhavinganepisodeofincontinence,thiswon’tcount.If,however,theirfearoranxietyissoseverethattheirdoctordiagnosesamentalhealthproblem,suchasagoraphobia,thentheymaybeeligibleforlowerratemobilityonthebasisoffearoranxietyrelatedtotheirmentalhealth.Butifthisisnotthecase,thenit’sbesttoavoidusingwordslikefrightenedoranxiousonthispage.

Step 2 Saywhathelpyourchildgets,orwouldbenefitfrom.

Doesyourchild:

• sometimesneedcarrying,orhelptofindsomewheretostopandrest

• needsomeonetomakesuretheydonotover–exertthemselves

• needcomfortandreassurancebecauseofdiscomfortorpain

• needsomeonetohelpthemfindatoilet,carryachangeofclothinganda washingkit,offercomfortandreassuranceiftheyhaveanepisode ofincontinence?

Q35

15

Step 3 Say why your child should not be expected to manage on their own.

Forexample,wouldyourchild:

• simplyavoidwalkinginunfamiliarplacesiftheywereexpectedtodosoon theirown

• finditadistressingexperience

• riskmakingthemselvesillthroughover–exertion?

Step 4 Say how your child’s needs are different from those of other children of the same age.

Wouldanotherchildofthesameagebemorelikelytowalkoutdoorsinunfamiliarplacesontheirown?

Evenifyourchildissoyoungthatyouwouldnotallowthemtowalkoutdoorsinunfamiliarplacesontheirown,dotheyneedmuchmorehelpandsupportthananotherchildofthesameage?

Q36 When did the child’s mobility needs start? Ifyoudonotknowtheexactdate,putinanapproximatedate/month.

QUESTIONS 37–53: CARE QUESTIONS

Q37 Do they need encouragement, prompting, or physical help to get into or out of or settle in bed during the day?

TickYes,fillinhowoftenandforhowlongeachtimeandwriteanexplanationintheboxatthebottomofthepageif:

• yourchildtakeslongerthanotherchildrenofthesameage,oritcauses thempain,discomfortordistress

• youhavetoprovidemorehelp,orhelpofadifferentkind,thanforotherchildren ofthesameage,orifyourchildhastobewatchedovermorecloselythanother childrenofthesameage.

OnlytickNoif:

• yourchilddoesnothaveanydifficultywiththeseactivitiescomparedtoother childrenofthesameage

• youhavereadtheexamplesontheformandinthemainboxbelowanddecided thatnoneofthemapply.

How often each day?

Ifyourchildisoftenathomebecausetheyareill,youmayneedtowakethem,getthemupandputthembacktobedseveraltimesduringtheday.

Forlowerratecare,itdoesn’tmatterhowmanytimesadayyourchildneedshelp,butforthemiddlerateyouhavetoshowthatyourchildneedshelpseveraltimesthroughoutthedayacrossallpersonalcareactivities.Forexample,inthemorning,duringthedayandatnight.

16

How long each time?

Roughlyhowlongdoesittakeyourchildtogetoutofbedorintobedtowakeuportosettle?

Inthemorning,thisshouldincludethetimefromwhenyourchildwakes,oriswoken,tothetimewhentheyareactuallyupandoutofbed.Atbedtime,ifittakesalongtimeandrepeatedvisitstosettleyourchild,includethewholeperioduntiltheyaresettled.

Ifyouwanttotelluswhytheyneedhelp,howtheirneedsvaryoranythingyouthinkweshouldknow,usetheboxbelow.

Step 1 Saywhatproblemsyourchildhas,givingspecificexamplesif you can.

Forexample,doesyourchild:

• havesuchdisturbednightsthattheyaretootiredtowakeorgetupin themorning

• getverydepressedabouttheirconditionandsolackthemotivationtogetup

• experiencesevereexhaustion,jointpain,stiffnessorabdominalpaininthe morning,makinggettingupaslowandpainfulexperience

• resistgettingupinthemorningbecausetheyareworriedaboutbeingbulliedat schoolbecauseoftheircondition

• resistgoingtobedbecausetheysufferfromanxietyornightmares

• getoutofbedrepeatedlyduringthenightbecauseofanxietycausedby theircondition

• oftenhavetostayinbedformostofthedaybecauseoftheircondition?


Forexample:

• doyoubringthemmedicationoradrinktohelpthemwakeuporgetup

• doyouencouragethemtowakeuporgetup,perhapshavingtoreturnrepeatedly

• doyouofferthemencouragement,supportorreassuranceinconnectionwith gettinguporgoingtobed

• doyouhavetowatchoverthemtomakesuretheyaresafewhentheygetupor gotobed

• dotheyneedphysicalhelpgettinguporgoingtobed

• doyouneedtospendtimesettlingtheminbedbeforetheyareabletosleep?

Step 3 Say why your child should not be expected to manage without this help.

Forexample:

• wouldtheybephysicallyunabletowakeup,getuporgotobedwithoutit

• wouldtheybecomeemotionallydistressediftheydidnotreceiveit

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• mighttheycometoharmiftheydidnotreceiveit?

• Ifitishelpthattheydon’tcurrentlyreceive,inwhatwayswouldthey benefitfromit?


• Forexample,canotherchildrenofthesameagedothesethings:

• withlesshelporwithnohelpatall

• morequickly

• withoutpain,discomfortorbecomingdistressed

• withlessencouragementorwithnoencouragementatall

• withlesssupervisionorwithoutbeingsupervisedatall?

• Ifyourchildusesanyequipmenttohelpwiththisactivity,givedetails.

Ifyourunoutofspace,writeyourextrainformationinquestions54or70,oronasheetofpaperattachedtotheclaimform.

Q38 Do they need encouragement, prompting or physical help to go to or use the toilet during the day? Doesthechildhavedifficultiescopingwiththeirtoiletneeds?

Ifyourchildhasastoma,usethispagetoexplainanydifficultiestheyhaveorhelptheyneedwithit.

TickYesatthetopofthepageandanyotherboxesonthepagethatapplyto yourchild.

Givedetailsinthemainboxbelowif,inconnectionwithtoiletneeds:

• yourchildtakeslongerthanotherchildrenofthesameage,oritcausesthem pain,discomfortordistress

• youhavetoprovidemorehelp,orhelpofadifferentkind,thanforotherchildren ofthesameage

• yourchildhastobewatchedovermorecloselythanotherchildrenofthe sameage

• yourchildneedsmoretellingorencouragementinadifferentwayto otherchildren.

OnlytickNoifyourchilddoesnothaveanydifficultywiththeseactivitiescomparedtootherchildrenofthesameage,andyouhavereadtheexamplesontheformandinthemainboxbelowanddecidedthatnoneofthemapply.

Ifyouwanttotelluswhyyouhavetickedtheboxes,howtheirneedsvaryor anythingelseyouthinkweshouldknow,usetheboxbelow.

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Step 1 Say what problems your child has with their toilet needs, giving specificexamplesifyoucan.


• havedifficultygettingtoandfromthetoiletbecauseofpainorfatigue

• haveepisodesofincontinence

• experiencepainordistressinconnectionwithbowelmovements

• havemorefrequentbowelmovementsthanotherchildrenofthesameage

• becomeexhaustedbythefrequencyoftheirbowelmovements

• haveparticularlynoisy,smellyorexplosivebowelmovements

• sometimesneedtowash,showerorbatheafterbowelmovements

• needtoapplycreamorchangepadsafterbowelmovements

• needhelpinconnectionwithleakagefromastomaapplianceorwithchanging thebag?

DecisionMakersmayarguethatachildwhoneedshelpgettingtoandfromthetoiletshoulduseapottyorcommodeinstead.Aretherereasonswhyyoudonotthinkyourchildshouldbeexpectedtodothis?Ifthereare,youneedtomakeyourcaseasstronglyaspossible.Forexample,

• theywouldstillhavetogettothebathroomtowashafterabowelmovement

• theirbowelmovementshaveaverystrongodourandthepottyorcommode wouldhavetobeemptiedimmediatelyandwouldleavetheroom unpleasanttouse

• theyareoldenoughthatusingapottyorcommodewouldaddpainfullyand unnecessarilytotheemotionaldistresstheirconditioncausesthem.


Forexample,doyou:

• helpthembatheandchangeafterepisodesofincontinence

• offerthemcomfort,supportorreassurancebecauseofdistresscaused bypain,discomfortorepisodesofincontinence

• applycreamorchangepads

• checkstoolsforbloodorexcessivemucus

• cleanthetoilet

• helpthemchangetheirstomaappliance

• emptyapottyorcommode?


Forexample:

• wouldtheybephysicallyunabletoattendtotheirtoiletneedswithoutit



19


Forexample,canotherchildrenofthesameagedothesethings:


• morequickly

• withoutpainordiscomfort

• withoutbecomingdistressed



Ifyourunoutofspace,writeyourextrainformationinquestions54or70,oronasheetandattachtotheclaimform.

Q39 Do they need encouragement, prompting, or physical help to move around indoors, use stairs or get into or out of a chair during the day?

• TickYesatthetopofthepageandtickanyotherboxesonthispagethatapply toyourchild.Givedetailsinthemainboxif,inconnectionwithmoving aboutindoors:




• ifyourchildneedsmorepromptingorremindingthanotherchildrenofthe sameage.

OnlytickNoifyourchilddoesnothaveanydifficultywiththeseactivitiescomparedtootherchildrenofthesameage,andyouhavereadtheexamplesontheformandintheboxbelowanddecidethatnoneofthemapply.

Ifyouwanttotelluswhyyouhavetickedtheboxes,howtheirneedsvaryoranythingelseyouthinkweshouldknowabout,usetheboxbelow.


Forexample:

Moving around

• Doesyourchildhavetohangontofurnituretosteadythemselves?

• Dotheysufferdiscomfortorpainiftheystandforanylengthoftime?

• Doesstandingmaketheirbowelurgencyworse?

20

Stairs

• Isitdifficult/painful/exhaustinggoingupordownstairs?

• Dotheybecomedizzyorunsteady?

• Dotheyhavetogoveryslowly,onestepatatime?

• Dotheyneedtoholdontothehandrail?

Getting out of chairs and off sofas (and in and out of bed if they have periods when they stay in bed for a large part of the time)

• Dotheytakealongtimetogetinoroutofchairs?

• Dotheystiffenupiftheysitorlaytoolong?

• Dotheyneedsomeonetohelpthemoffchairsandsofas?

• Havetheydevelopedspecialtechniquessuchasrollingoffsofasonto theirknees?

• Dotheyhavetoholdontothingstogetupright?

• Aretheysometimestooexhaustedtogetup?

• Isrisingfromsittingpainful?

• Dotheyhavetogetupanddownalotbecauseofpainandsorenessaround theanusorbecauseoffrequenttripstothetoilet?


Forexample:

• doyougivethemphysicalhelpwithmovingaround?Ifso,explainindetail whatitisyoudo

• doyouprovidethemwithencouragement,comfort,reassuranceorsupport inconnectionwithmovingaround?


Forexample:

• wouldtheybephysicallyunabletomovearoundwithoutit

• wouldtheybeinpain,ormorepain,withoutit




Forexample,canotherchildrenofthesameagedothesethingswithlesshelporwithnohelpatall:

• morequickly


21




Ifyourchildusesanyequipmenttohelpwiththisactivity,givedetailshere.


Q40 Do they need encouragement, prompting or physical help to wash, bath, shower and check their appearance during the day?

TickYesatthetopofthepageif,inconnectionwithwashingorhavingabath orshower:




• yourchildneedsmoretellingorencouragementorneedstobetoldor encouragedinadifferentwaytootherchildren.

OnlytickNoifyourchilddoesnothaveanydifficultywiththeseactivitiescomparedtootherchildrenofthesameage,andyouhavereadtheexamplesontheformandinthemainboxbelowanddecidedthatnoneofthemapply.

How often each day?

Ifyourchildhastowashorbatheafterusingthetoiletorfollowingepisodesofincontinence,remembertoincludeallthesetimes.Iftheirconditionvaries,giveanaverageorarange.

Forlowerratecareitdoesn’tmatterhowmanytimesadayyourchildneedshelp,butforthemiddlerateitneedstobeseveraltimesadayacrossallpersonalcareactivities,forexample,inthemorning,duringthedayandatnight.

How long each time?

Rememberthisincludesthetimetogetundressed,bathe,dryanddressagainandincludesanytimespentrestingin–between.


Step 1 Say what problems your child has, giving examples if you can.


• haveproblems,orsufferpain,gettinginandoutofthebath

• gettoofatiguedtowash,batheorhaveashower

• haveproblemsorpainwashingordryingtheirfeet,hairorback

22

• haveproblemsbecausetheyhavedressings,alineintoavein,orastoma appliancethatneedstobekeptdryorsterile

• needhelpreplacingpadsorapplyingcreamafterbathing

• haveproblemsorpainstandingtowash

• havetowashmoreoftenthanotherchildren

• tendtowashtoooftenorfortoolongbecauseofconcernsabout personalhygiene?


Forexample,doyou:

• encouragethemtowashorbathe

• helpthemwithwashingorbathing

• watchoverthemtomakesuretheyaresafewhilsttheywashorbathe

• offerthemsupportorreassuranceiftheyareinpainorbecomedistressed whilstwashingorbathing?

Step 3 Say why your child should not be expected to manage on their own.

Forexample:

• wouldtheybephysicallyunabletowashorbathewithoutit






• morequickly





Writedownanyspecialequipmentthatthechildhastouse,suchasashower seatorrail.


23

Q41 Do they need encouragement, prompting or physical help to dress and undress during the day?

TickYesatthetopofthepageandfillin‘howoften’and‘howlongeachtime’. Givedetailsinthemainboxbelowif,inconnectionwithgettingdressed orundressed:




• yourchildneedsmoretellingorencouragementorneedstobetoldor encouragedinadifferentwaytootherchildren.

OnlytickNoifyourchilddoesnothaveanydifficultywiththeseactivitiescomparedtootherchildrenofthesameage,andyouhavereadtheexamplesontheformandintheboxbelowanddecidethatnoneofthemapply.

How often each day?

Ifyourchildhastochangeduringthedayduetoepisodesofincontinence,remembertoincludeallthesetimesaswell.Ifyourchild’sconditionvariesgiveanaverageorarange.

Forlowerratecareitdoesn’tmatterhowmanytimesadayyourchildneedshelp,butforthemiddlerateitneedstobeseveraltimesadayacrossallpersonalcareactivities,forexample,inthemorning,duringthedayandatnight.

How long each time?

Remembertoincludeanytimeyourchildspendsresting,iftheyneedto.

Ifyouwanttotelluswhytheyneedhelp,howtheirneedsvaryoranythingelseyouthinkweshouldknowabout,usetheboxbelow.

Step 1 Saywhatproblemsyourchildhas,givingspecificexamples if you can.


• haveproblemsorpainreachingdowntoputonunderwear,socksorshoes

• havetowearloosefittingclothesoronesthatareeasytogetonandoff,suchas oneswithVelcroorelasticatedwaists

• sometimeshavetogetchangedbecauseofepisodesofincontinenceorleaks fromastomaappliance

• finditdistressingiftheyhavetogetdressedorundressedinfrontofother children,perhapsbecausetheyhaveastomaappliance,becausetheyare embarrassedatbeingphysicallylessdevelopedthanotherchildren,orbecause medicationhascausedthemtoputonweight?

24


Forexample:

• doyouencouragethemtodressorundress

• dotheyneedphysicalhelpgettingdressedorundressed

• dotheyneedwatchingovertoensuretheyarenotbulliedbyotherchildrenwhen dressingorundressing

• dotheyneedemotionalsupporttodealwithdistresscausedbyotherchildren (oradults)inconnectionwithdressingandundressing?


Forexample:

• wouldtheybephysicallyunabletodressorundresswithoutit



Ifthereishelpthattheydon’tcurrentlyreceive,inwhatwayswouldtheybenefitfromit?Forexample,wouldmoresupportandsupervisioninchangingroomsfromteachersmakethemlesslikelytobepickedon?


Forexample,canotherchildrenofthesameagedressandundress:


• morequickly






Q42 Do they need encouragement, prompting, or physical help to eat and drink during the day?

TickYesatthetopofthepageif,inconnectionwitheatingordrinking:



• yourchildneedsmoretellingorencouragement,orneedstobe toldorencouragedinadifferentwaytootherchildren

• yourchildhastobewatchedovermorecloselywthanotherchildrenofthe sameage.

25

OnlytickNoifyourchilddoesnothaveanydifficultywiththeseactivitiescomparedtootherchildrenofthesameage,andyouhavereadtheexamplesontheformandinthemainboxbelowanddecidethatnoneofthemapply.

How often each day?

Iftheirconditionvariesgiveanaverageorarange.Forlowerratecareitdoesn’tmatterhowmanytimesadayyourchildneedshelp,butforthemiddlerateitneedstobeseveraltimesadayacrossallpersonalcareactivities.

How long each time?

Includeanytimespentpreparingspecialdietsandcleaningormaintaining specialequipment.

Ifyouwanttotelluswhytheyneedhelp,howtheirneedsvaryoranythingelseyouthinkweshouldknow,usetheboxbelow.


Forexample:

• dotheyhaveaverysmallappetite

• dotheyassociateeatingwithabdominalpain

• dotheyfeelsickwhentheyeat

• doestheirmedicationaffecttheirappetite

• havetheysufferedfrommalnutritionorweightlossasaresultofnoteating

• dotheyhavetoeatsmalleramountsbutmoreoftenthanotherchildren

• dotheyhavetosticktoaspecialdietoravoidcertainfoods

• dotheysufferfromjointpainswhichmakeholdingcutleryorcuttingup foodpainful

• aretheyonparenteralnutritionortubefeeding?


Forexample:

• doyouhavetoremindorencouragethemtoeatordrink

• doyouhavetopreparespecialfoodordrinksforthem

• doyouoffersupport,comfortandreassuranceinconnectionwithpainor discomfortcausedbyeating

• dotheyneedremindingorencouragingtoavoidcertainfoods

• iftheyareonparenteralnutritionortubefeeding,describeindetailwhat thisinvolves,includingkeepingtheequipmentsterileandclearingblockages.

26


Forexample:

• wouldtheybephysicallyunabletoeatordrinkwithoutit


• mighttheycometoharmiftheydidnotreceiveit?Forexample,mightthey becomeveryweak,malnourished,underweightornotdevelopphysicallyat theproperrate?

Ifthereishelptheydon’tcurrentlyreceive,inwhatwayswouldtheybenefitfromit?Forexample,wouldtheirhealthbenefitiftheyreceivedmoresupervisionandencouragementaroundeatingatschool?




• morequickly





Q43 Do they need encouragement, prompting or physical help to take medication or have therapy during the day?

Tick Yesifyourchildneedsanyhelpwithmedication.TickYesifyourchildreceivesanytherapyatall.Don’tworryaboutwhethertheyneedmoreorlesshelpthanotherchildrenofthesameage.

OnlytickNoifyourchilddoesnothaveanydifficultywithtakingmedication,andyouhavereadtheexamplesontheformandintheboxbelowanddecidethatnoneofthemapply.

How often each day?

Ifyourchild’sconditionvariesgiveanaverageorarange.

Forlowerratecareitdoesn’tmatterhowmanytimesadayyourchildneedshelp, butforthemiddlerateitneedstobeseveraltimesadayacrossallpersonal careactivities.

How long each time?

Remembertoincludeanytimespentmakingmedicationmorepalatable.Statehowlongtheyspendwiththetherapistandhowlongyouspendhelpingthem.

Ifyouwanttotelluswhyyouhavetickedtheboxes,howtheirneedsvaryoranythingelseyouthinkweshouldknow,usetheboxbelow.

27

Ifyourchildattendstherapyand/orhastofollowaprogrammeoftherapyathome,writedownwhattheyhavetodo,whytheyhavetodoitandwhathelptheyneed.

Explainwhattherapyyourchildhas,suchas:

• physiotherapy

• hydrotherapy

• counselling

• psychiatrictreatment.

Ifyouareinvolvedinthetherapyinanyway,suchashelpingorencouragingyourchildtodoexercises,givedetailshere.

Ifyourchildtakesmedicationandtheyaretooyoungtotakeitwithouthelp,explaineverythingyouhavetodorelatedtothis,includinganywaysthatyoutrytomakemedicationmorepalatableandanycomfortorreassuranceyouprovide.

Ifyourchildtakesmedication,andchildrenofthesameagemightbeabletotakemedicationthemselvesduringtheday,thenfollowtheusualfoursteps:



• forgettotaketheirmedication

• trytoavoidtakingtheirmedicationbecauseofthesideeffectsithas

• becomeangryordistressedaboutalifewhichinvolveshavingtotakeso muchmedication

• becomeupsetwhentheyhavetodophysiotherapyexercisesathome?


Forexample,doyou:

• remindorencouragethemtotaketheirmedicationordotheirtherapytasks

• offerthemcomfortorreassuranceinconnectionwiththeeffectsof theirmedication

• findwaystomaketheirmedicationmorepalatable?


Forexample:

• wouldtheybephysicallyunabletotaketheirmedicationwithoutit



28


Forexample,canotherchildrenofthesameagetakemedication:


• morequickly





Q44 Dotheyhavedifficultyseeing?

Thismaynotberelevanttoyourchild,butifitis,ticktheboxesanddescribethedifficultiesyourchildhaswithseeing.

Q45 Dotheyhavedifficultyhearing?

Thismaynotberelevanttoyourchild,butifitis,ticktheboxesanddescribethedifficultiesyourchildhaswithhearing.

Q46 Dotheyhavedifficultyspeaking?

Thismaynotberelevanttoyourchild,butifitis,ticktheboxesanddescribethedifficultiesyourchildhaswithspeaking.Ifyourchildhasdifficultyspeakingtopeopletheydonotknoworiftheyfinditdifficulttospeaktopeopleinvolvedwiththeircaresuchasdoctors,writethisintheboxatthebottomofthepage.

Q47 Dotheyhavedifficultyandneedhelpcommunicating?

Thismaynotbeasectionthatisrelevanttoyourchild.However,ifyourchilddoeshavedifficultiesinthisarea,tickYesandtherelevantboxes.

OnlytickNoifyourchilddoesnothaveanydifficultywithcommunicatingwithotherpeoplecomparedtootherchildrenofthesameage,andyouhavereadtheexamplesontheformandintheboxbelowanddecidedthatnoneofthemapply.


Step 1 Saywhatproblemsyourchildhaswith,givingspecificexamplesifyou can.

Forexample:

• havetheybecomesolitary,shyorwithdrawnbecauseoftheirconditionor theeffectsoftheirmedicationontheirappearance

• dotheystruggletotalkabouttheirsymptomsordifficultiesdue toembarrassment

29

• dotheyfinditeasiertotalktoadultsthanchildrentheirownage

• aretheyteasedorbulliedbyotherchildrenasaresultoftheircondition

• dotheysometimesbecomeanxiousoraggressivewhentalkingtoother childrenoradultsbecauseofemotionaldifficultiescausedbytheircondition ormedication?


Forexample:

• doyouspendmoretimetalkingwithyourchildthanyouwouldwithanotherchild ofthesameage

• doyouspendtimetryingtoboostyourchild’sself–confidenceandself–image inordertohelpthemfeelabletotalktootherchildren

• doyouspendtimeencouragingyourchildtotalktootherchildren

• doyouofferyourchildsupportandreassuranceiftheyareupsetasaresultof beingteasedorbulliedbyotherchildren

• doesyourchildneedhelpexplainingtheirneedstootherpeople?


Forexample:

• mighttheybecomemorewithdrawnorisolatedwithoutit?


Forexample,canotherchildrenofthesameagecommunicate:





Q48 Dotheyhavefits,blackouts,seizuresorsomethingsimilar?

Thismaynotberelevanttoyourchildbutifyourchilddoeshavesuchdifficulties,tickYes andtheotherrelevantboxesanddescribetheirdifficultiesindetailintheboxatthebottomofthepage.

30

Q49 Do they need to be supervised during the day to keep safe?

TickYesatthetopofthepageandalltheboxesthatapplytoyourchildifyourchildneedsmoresupervision,orsupervisionofadifferentkindtootherchildrenofthesameage,tokeepthemsafe.

OnlytickNoifyouhavereadtheexamplesontheformandreadtheboxesbelowanddecidedyourchilddoesn’thaveanysuchproblems.


TobeawardedDLAforsupervisionduringtheday,youneedtoshowthatyourchildneedscontinualsupervision,whichmeansthatitmustbefrequentorregularthroughouttheday.Youalsoneedtoshowthattherewouldbeariskofharmtoyourchildiftheydidnotreceivethissupervision.

Step 1 Say why your child needs supervision, giving examples if you can.

Forexample,doesyourchildneedsomeonetokeepaneyeonthembecause:

• theymaybecomeovertired

• theyneedsomeonetomonitortheirfoodandliquidintake

• theyareonanasalfeedingtubeorsomethingsimilarthroughouttheday

• theymayharmthemselves?


• Wouldotherchildrenofthesameageneedsupervisinglessclosely, lessfrequentlyornotatall?

Q50 Do they need extra help with their development?

Thismaynotbeasectionthatisrelevanttoyourchild.Iftheyhavedifficultyinteractingwithotherchildrenandtheworldaroundthem,tickYesatthetopofthepageandinalltheboxesthatapplytoyourchild.


Step 1 Say what problems your child has with the activities listed on the page,givingspecificinstancesifyoucan.

Forexampledoesyourchild:

• havedifficultygettingonwithotherchildrenofthesameage,forinstance becauseofembarrassmentabouttheirillnessorbecausethey’renotphysically abletoplaythesamegamesasotherchildrentheirage

• tendtobemuchmoreshyoraggressivethanotherchildrenofthesameage

• havedifficultyplayingwithotherchildrenbecausetheymissedoutonalotof playopportunitiesduetoillness

• havedifficultytrustingotherchildren

• relatemuchbettertoadultsthanotherchildren

• spendmostoftheirtimealone?

31


Forexample:

• encouragementtospendtimewithotherchildren

• carefulsupervisionwhenwithotherchildren.


Forexample:

• willitbecomehardertolearnsocialskillsastheygetolder

• willtheybecomeevenmoreisolatedastimepassesby

• aretheylikelytobecomedepressed?


• Wouldotherchildrenofthesameagerequirethesameamountofsupport orencouragementinconnectionwithdevelopment?

Q51 Do they need encouragement, prompting or physical help at school or nursery?

TickYes andallrelevantboxesifyourchildneedsmorehelpatschoolornursery, andgivedetailsintheboxesbelow.Ifyourchildhasbehaviouralissuessincebecomingunwell,writethatinformationinthebox.

Step 1 Say what problems your child has with the activities listed on the page,givingspecificinstancesifyoucan.

Forexample,asaresultofmissingschooland,whilstatschool,oftenbeingunwellorfrequentlyhavingtoleavetheroomtogotothetoilet,doesyourchild:

• needhelptochangeastomaduringtheschoolday

• haveproblemswithbasicliteracyornumeracy

• findithardtoconcentrate,forexamplebecauseoffatigueorsideeffectsof medicineslikesteroids

• havedifficultieskeepingupwithotherchildrenintheirclass

• havedifficultychangingforPEorcannottakepartinPEduetoillhealth

• needhelptotakemedication

• needencouragementtoeatordrink?

32


Forexample:

• moreone–to–onehelpatschoolfromateacherorteachingassistant

• extratuitionathome

• extrahelp,supportorencouragementfromyouwiththeirschoolwork.


Forexample:


• woulditseriouslyaffecttheirself–esteem

• wouldtheybecomemoreisolatedatschool

• wouldtheyfallbehindwiththeirschoolwork?


• Wouldotherchildrenofthesameagerequirelesshelpwithschoolwork?

Q52 Do they need encouragement, prompting or physical help to take part in hobbies, interests, social or religious activities?

Answeringthesequestionscanbeveryimportantifyourchildneedssupportandencouragementwithplay,socialisingorotherleisureactivities.Don’thesitatetouseseparatesheets.Ifthisappliestoyourchild,tickYes.

At home

Thiscanbeanyactivitiesthatyourchildneedsmorehelporencouragementwiththanotherchildrenofthesameage.Forexample,thiscouldbe:

• helpwithschoolwork,becausetheyhavemissedalotofschoolthroughillness

• encouragementtoundertakeanyactivities,becausedepressionabout theirconditionorphysicalpainmakeitdifficultforthemtomotivatethemselves

• physicalhelpwithsettinguporplayinggames.

When they go out

Doesyourchildneedmorehelporencouragementtogooutthanotherchildrenofthesameage?Anywhereyourchildmightgotoisrelevant.Forexample,playingoutdoors,goingtothedoctor,hospital,physiotherapist,counsellor,library,goingshoppingforpleasure(ratherthanfornecessities),holidays,cinema,church,eveningclasses,localpark,clubs,day–trips,visitingfriendsandrelatives,swimming,gym,sportscentre.

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Help needed

Describewhathelptheygetorwouldneedinordertocarryoutthisactivity.Dotheyneedsomeonetoencouragethemtoundertaketheactivity?Dotheyneedsomeonetodrivethemtoandfromplaces?Dotheyneedsomeonetocarrythingsforthem,toleanon,tohelpthemfindatoilet,tohelpthemgettoandfromthetoilet?Dotheyneedsomeonetoofferthemsupportandreassurancebecauseofthepossibilityofanepisodeofincontinence?Dotheyneedsomeonewiththemincasetheyhaveadizzyspellorafall?

How often?

Isthissomethingtheywoulddomorethanonceaday?

Forlowerratecareitdoesn’tmatterhowmanytimesadayyourchildneedshelp,butforthemiddlerateitneedstobeseveraltimesadayacrossallactivities.

How long each time?

Include,ifrelevant,thetimeneededtoencouragethemtoundertaketheactivity,accompanythemthere,staywiththem,throughouttheactivityandaccompany themback.

Q53 Do they wake and need help at night or need someone to be awake to watch over them at night?

Ifyouhavetogetupduringthenighttohelpyourchild,thentickYes.

This is a very important page.Evenasmallamountofhelpatnightmaybe sufficientforyourchildtobeawardedthemiddlerateofthecarecomponent.Iftheyneedhelpduringthedayandatnighttheymaygetthehigherratecarecomponent.

Remember, night means the time when the adults in your house normally go to bed.

OnlytickNoifyouhavereadtheexamplesontheformandtheboxbelowand decidedthatnoneofthemapply.

How often each night?

Ifthisvaries,giveanaverageorarange.Toqualifyformiddleratecareyourchildhastoneedhelpforatleast20minutesanight,oratleasttwiceanight.

How long each time?

Ifthisvaries,giveanaverageorarange.Toqualifyformiddleratecareyourchildhastoneedhelpforatleast20minutesanight,oratleasttwiceanight.

Ifyouwanttotelluswhytheyneedhelporwatchingover,howtheirneedsvaryoranythingelseyouthinkweshouldknow,usetheboxbelow.

Explainwhythechildneedssomeoneawakewiththemduringthenight.

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Forexample,dothey:

• gethungryorthirsty

• haveepisodesofincontinence

• havebaddreams

• sufferpain?


Forexample,doyou:

• bringthemmedication,drinksoranythingelseduringthenight.Ifso,explain atStep3whythesecan’tjustbeleftwithinreachforthem,incasethey needthem

• helpthemwithchangingpositionorrearrangingthebedding

• stripthebed,putonfreshbeddingandputthesoiledbeddingontosoakor washafteranepisodeofincontinence

• makeahotwaterbottleforthemtoputonapainfuljointorontheirabdomen

• massagepainfulareasoftheirbody

• givethemcomfortandreassurancetohelpthemgobacktosleep?


Wouldthey:

• beunabletosleepwithoutit

• becomeemotionallydistressediftheydidnotreceiveit

• cometoharmiftheydidnotreceiveit?


Forexample,canotherchildrenofthesameagegetthroughthenight:





Ifyourchildusesanyequipmenttohelpthemduringthenight,givedetailshere.

35

QUESTIONS 54–55: EXTRA INFORMATION ABOUT CARE

Q54 If you want to tell us anything else about their care needs, use the box below.

Usethisspacetowritedownanyextrainformationyouthinkisrelevantorany informationthatyoucouldn’tfitonapreviouspage.

UsethisspacetotelltheDecisionMakeranythingelsethatwillhelptogivea clearerpictureoftheimpactIBDhashadonyourchild’slife.Forexample:

• havetheyhadtogiveupsportsorotherpursuitsthatusedtomeanagreat dealtothem

• havetheychangedfrombeingoutgoingandfriendlytowithdrawn,self–conscious andwaryofotherchildrenoradults

• havetheybecomeverythinorhastheirmedicationmadethemputonalot ofweight?

Istheirconditionveryunpredictableanddifficulttomanage?

Dotheymissoutonalotofthings,suchasschooltripsandholidays,becauseoftheircondition?

Iftheyhavehadhospitaladmissionsorsurgeryyoucangivemoredetailshere.

Iftheyhaveastoma,orhavespecialtreatmentssuchastotalparenteralnutritionthatyouhavenotalreadycoveredfully,givedetailshere.

Middle rate care

Althoughtheclaimformaskslotsofquestionsabouthowoftenyourchildneedshelpandhowlongfor,itdoesn’taskyouaboutwheninthedaytheyneedhelp.However,thisinformationcanbeveryimportant.Ifyourchildneedshelpforatleastanhouraday,butonlyinonechunk,oronlyatthebeginningandendoftheday–perhapshelpwithwashing,dressingandundressing–theyarelikelytoqualifyonlyforthelowerrateofthecarecomponent.Forexample,ifyourchildneedshelpandencouragementfor40minutesinthemorningwithgettingup,washinganddressingand20minutesintheeveningtogetthemtobed,thismaybeenoughforthemtogetlowerratecare.

Togetthemiddlerateyouhavetoshowthatyourchildneedshelp‘frequentlythroughouttheday’,sotheyhavetoneedhelpinthemorning,duringthedayandintheevening.

‘Frequently’hasbeendefinedforbenefitspurposesasmeaning‘several times – not once or twice’,butthereisnocleardefinitionofwhat‘frequentlythroughouttheday’means.TheDecisionMakerhastodecideeachcaseonthefacts,soitmaybehelpfulifyoumakethosefactsasclearaspossible.Youcanusethispagetolistwhentheyneedhelponanaverageday.

36

Forexample:

Help my child needs throughout an average day

7.30am Helpwithgettingoutofbedwashinganddressing8.30am Encouragementtoeatandhelptakingmedication

12.30pm Encouragementtoeatandhelptakingmedication4.00pm Encouragementtospendtimewithotherchildrenoutsideschoolhours,because

mychildhasbecomequitewithdrawnandisolatedduetotheircondition.5.00pm Additionalhelpwithschoolworkbecausemychildhasmissedsomuchduetotime

offwhenunwell.6.00pm Encouragementtoeatandhelptakingmedication.8.30pm Helpwithwashing,undressingandgettingintobed.

Q55 When did the child’s care needs you have told us about start?

IfyourchildhadcareneedsbeforetheywerediagnosedwithIBD,writethedatethecareneedsfirststarted.

QUESTIONS 56–68: ABOUT YOU Thesequestionsareabouttheadultwhoismakingtheclaimon

behalfofthechild.PleaseremembertoaddyourNationalInsurancenumber(question58)andadaytimephonenumber(question61)astheDWPmayphoneyouandaskyouafewquestions.

Q69 How we pay you

TheDWPneedyourbankdetailsevenbeforetheymakeadecisionwhetherornottoawardDLAtoyourchild.

Q70 Extra information

Tell us anything else you think we should know about the child’s claim

WritedownanyadditionalinformationabouttheclaimthatyouwanttheDWP toknow.

Q71 Declaration

Signanddatethedeclaration.

Congratulations! You’ve done it. The claim form is complete. Remember to photocopy the form before you send it.

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THE IMPORTANCE OF SUPPORTING EVIDENCE Aswellasyourclaimform,theDecisionMakerhastotakeinto

accountanyotherevidenceyouprovide.Thisincludesadditionalevidencefromyouandevidencefromotherpeople.

MEDICAL EVIDENCE Thiscanmakeanenormousdifferencetowhetheryourchild’sclaimsucceeds.

Detailedevidencefromhealthprofessionals,suchasyourchild’snurse,GPorotherspecialistsinvolvedinyourchild’scare,maymeanthatyourchild’sclaimisdealtwithmorequicklyandthatyouarelesslikelytohaveahomevisitfromtheDWP.AlwaysinformyourGPthatyouaremakingaclaimforDLAasitislikelytheDWPwillcontacthimorherwithouttellingyoufirst,evenifheorshehasverylittletodowithdealingwithyourchild’scondition.

Askthehealthprofessionalsmostinvolvedinyourchild’scareiftheywillwritealettersupportingtheclaim.Makeanappointmenttoseethemsoyoucanansweranyquestionstheyhaveandtakethe Health professional’s sheet (Appendix4)atthebackofthisguidewithyou.Askthemtosendthelettertoyousoyoucankeepacopy,andifnecessary,askthemtochangeanythingyouthinkisinaccurateorunhelpful.Itisuptoyoutodecidewhatevidenceyousubmit.Donotfeelobligedtousealetterthatmaynotbehelpfulormightactuallyharmyourcase.

NON–MEDICAL EVIDENCE Carers,teachers,friendsorrelativeswhohelptolookafteryourchildcanalso

submitlettersassupportingevidence,buttheyshouldgivethemtoyoutosubmitsothatyoucankeepacopy.Ifthelettersaysthingsthatyouthinkareunhelpfulthenaskthewritertochangethemorsimplydonotsubmitit.Don’tfeelobligedtosubmitaletterjustbecausesomeonehasbeenkindenoughtowriteit.Aletterthatsaysthewrongthingscanbedamagingtoyourclaim.

Itisimportant,ifpossible,tosubmitevidencefromyourchild’snursery,schoolorcollege.Familieshavetoldusthattheirclaimshavebeenturneddownbecausetheydidn’tprovideenoughevidencefromtheirchild’sschool.Youcouldaskyourchild’steachertoexplainwhathelptheschoolprovidestoovercomeproblemswith absence,exams,schooltripsandtoileturgency.

KEEPING A DIARY Itisveryusefultokeepadiaryforaboutsevendaystodetailallthedifficultiesyour

childexperiencesandallthehelptheyreceive.Ifyoukeepadiarybeforeyoufillintheclaimform,itcanmakefillingintheclaimformaloteasier.Youcansendacopyofthediaryinwithyourchild’sclaimformasadditionalevidence.Ifyourchildhasafluctuatingconditionitmaybehelpfultokeepadiaryforalongerperiodof2–3weeks,tobetterreflecttheircondition.

38

Adiarymayalsoproveinvaluableifyouneedtoattendatribunal,asitwillbeevidenceofwhatproblemsyourchildhadatthetimeyoumadetheclaim.Tribunalsaregenerallyverykeenonhearingaday–by–dayaccountofthethingsyourchildfindsdifficultandthehelpyouprovide.

Don’t forget

Youmustsendyourclaimformbeforethedeadline.Youcansendotherevidence laterifnecessary.EnclosealetterwithyourclaimformtellingtheDWPthatyouintendtosendfurtherevidence,andwhenyouhopetosendittothem.

WHAT HAPPENS NEXT YoushouldreceiveanacknowledgementwithinfiveworkingdaysoftheDWP

receivingyourclaimform.YourclaimwillthenbelookedatbyaDecisionMaker,whomaymakeadecisionontheinformationyouhavesentormaydecidetheyrequiremoreinformation.TheDecisionMakermaycontactyourchild’sGP,ormorerarelyyourchild’sspecialist,forfurtherinformationand/ortheymayasktheDWPtosendahealthprofessionaltovisityourchildforamedical.

PREPARING FOR A MEDICAL There’snowayofknowingwhetheryourchildwillhavetohaveamedicalornotwhen

youmakeyourclaim.Thefirstyouwillhearaboutitiswhenyoureceivealetter,orpossiblyaphonecall,tellingyouthattheDWPwishtosendahealthprofessionaltoyourhome.Ifyourefusetoallowyourchildtobeexamined,yourchild’sclaimforDLAwillautomaticallybeturneddown.Thehealthprofessionalmaybeadoctor,buttheycouldbeanotherhealthprofessional,suchasaphysiotherapist,occupationaltherapistornurse.

YoucantelltheDWPthatyouwanttohaveafriendorrelativepresentandmakesurethatthevisitisarrangedforatimewhentheycanbethere.We strongly advise you to do this – details why are given below.

Somepeoplewillbevisitedathomebyapoliteandinterestedhealthprofessionalwhotakesthetimetolistenandwritesanaccuratereportoftheirvisit.Sadly,weknowfromCrohn’sandColitisUKmembersthatthisisn’talwaysthecase.Somepeoplehavereportedthatthevisitinghealthprofessionalseemedinarush,stayedonlyaveryshorttimeandwasn’tinterestedinwhattheyhadtosay.Somefoundthehealthprofessionalrude.Othersreportedthatalthoughthehealthprofessionalseemedsympatheticandencouraging,theylaterdiscoveredthatthemedicalreportwasverydismissiveoftheirchild’sneeds.Havingafriendorrelativewithyoucanmakeitmucheasiertodealwiththesesituations.

Havingsomeoneelsepresentnotonlyprovidesmoralsupport,itcanalsoprovideyouwithawitnesstowhathappenedatthemedical.Pleasealsousethe Medical visit record sheet(Appendix3)attheendofthisguidetorecordwhathappens,asthiscanbeusedasevidenceatanappeal.Lookthroughthesheetbeforethe medicalandfillitinafterwardsifyouwanttohavearecordofwhathappened.Remembertomakeanoteofthetimethehealthprofessionalarrivedandleft.Iftheyonlystayedashorttimeyoucanusethisasevidencethattheirreportislesslikelytobereliable.

39

THE MEDICAL AND THE MEDICAL REPORT ARE DIVIDED INTO TWO PARTS:

PART ONE OF THE EXAMINATION Thisshouldbeastatementofyourchild’sneedsinyourownwords.Thehealth

professionalshouldaskyouaboutmostoftheactivitiesintheclaimform,what difficultiesyourchildhaswiththem,andwhatattentionorsupervisionyour childrequires.

Readthroughyourphotocopyofyourchild’sDLAclaimformandrefreshyour memoryonallthesepointsbeforethehealthprofessionalarrives.Bewareofleadingquestionslike‘Theydon’thaveanytroublewith…dothey?’or‘Theycanmanage…can’tthey?’Trynottobepersuadedorfeelpressuredintogivingananswerthatisn’tcorrect.Thehealthprofessionalshouldwritedownwhatyousayandtheneitherreadthestatementbacktoyouorgiveittoyoutoread.Youthensigntosaythatyouagreewithwhathasbeenwritten.

Do not sign unless you are completely happy with what is written.

Thisisasignedstatementsayingwhatyouconsideryourchild’sproblemstobe.Ifitdiffersfromwhatyou’vewritteninyourclaimformitmaybeusedbytheDWPasgroundsforrefusingyourclaim.

Ifyouneedtoreadthestatement,orhaveitreadtoyou,twoorthreetimesinordertocheckitfully,thendoso.Don’tbehurried.ThehealthprofessionalisbeingpaidbytheDWP.Ifthereisanythingyoudisagreewith,askthehealthprofessionaltochangeit.Ifthereisanythingmissing,askthehealthprofessionaltoputitin.Carryonuntilyouarecompletelyhappywiththestatement.Ifthehealthprofessionalwon’twritewhatyouask,thenpolitelyrefusetosign,butstillco–operateineveryotherrespectwiththemedical.Ifthehealthprofessionaltellsyouthatyoumustsignortheclaimwillfail,tellthempolitelythattheyaremistakenandshowthemthispageifyouwish.Thisguidewaswrittenbyabarrister.Ifthehealthprofessionalsaystheyarerunningoutoftimeandhavetobesomewhereelse,politelysuggestthattheyarrangeafurtherappointmenttocomebackandfinishthemedical.But,whateveryoudo,don’tsignuntilyou’resatisfied.

Wedounderstandhowdifficultdisagreeingwithahealthprofessionalcanbe.That iswhywestronglyrecommendyouconsiderhavinganotheradultwithyoutogive yousupport.

PART TWO OF THE EXAMINATION Inthesecondpartofthemedical,thehealthprofessionalmayaskyouoryourchild

morequestions,carryoutabriefphysicalexaminationandaskyourchildtocarryoutsimpleactivitiessuchasstandingupandwalkingacrosstheroom.Ifyouknowthatsomethingtheyaskwillcauseyourchildpain,youshouldtellthehealthprofessionalyoudonotwishyourchildtodoitandexplainwhy.

Whilethehealthprofessionalexaminesyourchildtheywillfillouttheirownreportstatingwhat,intheiropinion,yourchild’sneedsare.Thisisthehealthprofessional’spartofthereport,theyareentirelyfreetodisagreewitheverythingyouhavesaidandtheywillnotshowyouwhatiswritten.Youwillreceiveacopyofthewholereportatalaterdateifyouappealagainstthedecision.

40

Whileit’simportanttobepreparedforamedicalvisitfromaDWPhealth professional,trynottoworryaboutit.Manypeoplesaytheyhadnoideawhattoexpectbeforetheyhadtheirmedicalandthattheywereverydisappointedwithhowquickandirrelevantthewholethingseemedtobe.WealsoknowthatmanyDLAclaimsareturneddownbecauseofthevisitinghealthcareprofessional’sreport. Bybeingproperlypreparedforthemedicalyoucanreducethechancesofthis happeningtoyou.

THE DECISION Youwillreceiveadecisionlettertellingyouwhetheryourchildhasbeenawarded

DLA.Ifyourclaimhasbeensuccessfultheletterwilltellyouwhichcomponents–careand/ormobility–yourchildhasbeenawardedandatwhatrates.Itwillalsotellyouwhetheryourchild’sawardisforafixednumberofyearsorwhetheritwillcontinueuntilyourchildreachestheageof16,whentheywillhavetoapplyforPIP.

ForinformationonclaimingPIP,seeourguide Claiming Personal Independence Payments (PIP).Ifyouarehappywiththeawardthenyoudon’tneedtodoanythingelse,exceptcheckwhetheryouqualifyforotherbenefits,orincreasedamountsofotherbenefits.CitizensAdvicemaybeabletoadviseyouonthis(seeHelp, Information and Support onpage41).

Iftheawardisforafixednumberofyears,youshouldbesentanotherclaimformtocompleteseveralmonthsbeforeitrunsout.Iftheawardisuntiltheageof16,youmaystillreceiveclaimformstofillineveryfewyearsandtheawardcanstillbereducedorstoppeddependingonwhatyouwriteintheclaimforms.Youshouldalwayskeepyourchild’soriginalclaimformforreference,whateverlengthofawardyoureceive.

Ifyourchild’scircumstanceschange–theirconditionimprovesordeteriorates–youshouldtelltheDWPasitmaymeanthattheirDLAshouldbereducedorincreased.

CHALLENGING THE DECISION Ifyourclaimisturneddown,orifyouareunhappywiththerateawardedorthe

lengthoftimeithasbeenawardedfor,youcanchallengethedecision.

Firstly,youcanasktheDWPtolookattheirdecisionagain.Thisiscalleda Mandatory Reconsideration.Youmustdothiswithinonecalendarmonthofthedateonthedecisionletter,althoughthetimelimitcanbeextendedinsome circumstances.Tellthemwhyyoudisagreewiththeirdecision,bearinginmindthecriteriaforDLA.Thereisatemplateformyoucanuseforthisat:

www.gov.uk/government/publications/challenge-a-decision-made-by-the- department-for-work-and-pensions-dwp

Youdon’thavetousethisform–youcouldwriteyourownletterinsteadifyouprefer.

Itmaybehelpfultoprovideadditionalinformationorevidenceinsupportofyourclaim–seethesectionThe importance of supporting evidenceonpage37,tofindoutwhatkindofevidencemaybestsupportyourclaim.

TheDWPwilllookatyourclaimagainandletyouknowwhethertheycanchangetheirpreviousdecision.

http://crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/publications/claiming-personal-independence-payments-pip

http://crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/publications/claiming-personal-independence-payments-pip

http://www.gov.uk/government/publications/challenge-a-decision-made-by-the-department-for-work-and-pensions-dwp

http://www.gov.uk/government/publications/challenge-a-decision-made-by-the-department-for-work-and-pensions-dwp

41

Afterthereconsiderationifyouarestillnotsatisfied,youcan appealtoan independenttribunal.You’llhaveonemonthtoappeal–themonthstartsfromthedateonthedecisionletterstatingthat,followingthemandatoryreconsideration, thedecisionisunchanged,butthiscanbeextendedinsomecircumstances.The decisionletterwilltellyouwheretosendyourappeal.YoushouldusetheformSSCS1whichisavailablefromindependentadviceagencies,oronlinefrom

www.gov.uk/government/publications/appeal-a-social-security-benefits- decision-form-sscs1

ForNorthernIreland,useformNOA1(SS)andsendtoTheAppealsService(TAS)directly.YoucanfindtheNOA1(SS)format

www.nidirect.gov.uk/publications/appeal-form-noa1ss

We suggest that you seek advice if you are considering making an appeal.

IfyouhavebeenawardedDLAbutareconsideringchallengingthedecisiontotrytogetyourawardincreased,dobearinmindthatthereissomeriskthatyourexistingawardcouldbereducedorended,insteadofbeingincreased.Ifyouareunsurewhattodo,seekadvicefromtheorganisationslistedattheendofthisguide.

HELP, SUPPORT AND INFORMATION

ADVICE AGENCIES AND ADVICE WORKERS Theseorganisationsmaybeabletohelpwithfillingformsandchallengingthe

decisionifyou’reunhappywithit.However,adviceagenciesmaybeverydifficulttogetthroughtoonthephone,havenoappointmentsystem,longqueuesandnopublictoilets.Ifyoucan’tgetthroughtoyourlocalagencyonthephone,trywritingtothemexplainingyourchild’shealthproblemsandaskingiftheydohomevisits,orseeiftheycanphoneyoutoofferadvice.Youcansearchonlineforadviceagenciesbyusingsearchtermssuchas‘disabilityinformationandservices’or‘socialserviceandwelfareorganisations’plusyourlocalarea.

Please note:youmayhavetotryrepeatedlybeforeyoucangetthroughtoadviceagenciesonthetelephone.Youshouldalsobeawarethathelpfromadviceagenciesisverymuchindemand,sothesooneryouseekhelpthebetter.

Citizens Advice

www.citizensadvice.org.uk

ThereareCitizensAdviceofficesacrosstheUK.Youcanfinddetailsofyournearestofficeontheirwebsite.

Civil Legal Advice (CLA)

0345 345 4345

www.gov.uk/civil-legal-advice

GetfreeandconfidentiallegaladviceinEnglandandWalesifyou’reeligiblefor legalaid.

http://www.gov.uk/government/publications/appeal-a-social-security-benefits-decision-form-sscs1

http://www.gov.uk/government/publications/appeal-a-social-security-benefits-decision-form-sscs1

http://www.nidirect.gov.uk/publications/appeal-form-noa1ss

http://www.citizensadvice.org.uk

http://www.gov.uk/civil-legal-advice

42

AdviceUK

www.adviceuk.org.uk

Over700adviceagenciesaremembersofAdviceUK.DetailsofyournearestonesareavailablefromAdviceUK’swebsite.

Advice NI (Northern Ireland)

0800 988 2377(Freephone)

AdviceNIistheumbrellabodyforindependentadvicecentresinNorthernIreland.YoucangetdetailsofyourlocalindependentadvicecentreinNorthernIrelandfromtheirwebsite:www.adviceni.net

Housing Associations

Somehousingassociationsemployawelfarerightsworker.Ifyouliveinahousingassociationproperty,contactyourlocaloffice.

Doctors’ surgeries

Anincreasingnumberofsurgeriesandhealthcentreshaveawelfarerightsworkeronthepremises,part–timeorfull–time.Checkwiththereceptionistat yoursurgery.

Local Authority

Yourlocalcouncilmayemploywelfarerightsworkerswhocanhelpyouwithyourclaim.Startbyaskingyourcouncil’smainswitchboardiftheycanputyouthroughtoawelfarerightsworker.Iftheoperatordoesn’tknowofone,asktobeputthroughtotheSocialServicesDepartment.

Government websites

Government in England, Scotland and Wales

www.gov.uk

Government in Northern Ireland

www.nidirect.gov.uk

http://www.adviceuk.org.uk/

http://www.adviceni.net

http://www.direct.gov.uk

http://www.nidirect.gov.uk

43

APPENDIX 1. TWO–MINUTE DLA TEST FOR CHILDREN

Step 1 Look through this list of some (but not all) of the activities that are relevant to DLA:

• walkingoutdoors(especiallyinunfamiliarplaces)

• gettingintooroutofbedorsettlinginbed

• goingtoorusingthetoilet

• washing,bathing,showeringandcheckingtheirappearance

• dressingandundressing

• eatinganddrinking

• talkingtootherpeople

• beingleftalone

• takingmedicationordoingtherapy

• someonekeepinganeyeonthem

• helpwiththeirdevelopment–play,behaviour

• extrahelpatschoolornursery

• socialandleisureactivities

• helpduringthenight–toilet,someonetowatchoverthem

Step 2 Chooseoneoftheactivitiesabovethatyourchildhasdifficultieswith.Forexample,yourchildmayhavedifficultieswithwalkingbecauseoffatigue;talkingtootherpeoplebecausetheyhavebecomeverywithdrawn;goingtothetoiletbecauseofsorenessaroundtheanus.

44

Step 3 Withyourchosenactivityinmind,answerthefollowingtrueorfalsequestions:

My child can do it,

• butithurtsthem TrueorFalse?

• butonlymoreslowlythanotherchildrenofthesameage TrueorFalse?

• butonlywithmorehelpthanotherchildrenofthesameage TrueorFalse?

• butnotassafelyasotherchildrenofthesameage TrueorFalse?

• butonlybecausethey’vegotaspecialtechniqueoftheirown TrueorFalse?

• buttheyneedmoreencouragementthanotherchildrenofthesameage TrueorFalse?

• buttheyneedaclosereyekeptonthemthanotherchildrenofthesameage TrueorFalse?

My child can’t do it,

• butotherchildrenofthesameagecan TrueorFalse?

Step 4 Ifyouhaven’tansweredTruetoanyofthequestions,trythetestagainwithanotheractivityfromthelistandsoon,untilyoufindastatementthatistrueoryoudecidethattherearen’tany.

Step 5 Iftheansweris True to anyofthequestionsaboveinrelationto anyactivitythenyourchildmaybeentitledtoDLA.Ifyourchild’sconditionisavariableone,sotheanswerissometimesTrueandsometimesFalse,thentheymaystillbeeligibleforDLA.ReadthesectionHowtoexplainfluctuatingconditionsonpage9.

Iftheanswerisn’tTruetoanyofthequestions,yourchildmaystillbeeligibleforDLA.YoucangetadvicefromoneoftheagencieslistedintheHelp, Support and Informationsectiononpage41.

APPENDIX 2. CLAIM FILE RECORD SHEET

Date Letter Phone

To From To From

Name and section Details

6/2/18 DLAUnit,FlowersHill Claimformand lettersfromGP andconsultant

11/2/18 JennyinClaimsSectionDLAUnit,FlowersHill0117949671

Shesaidtheyhad receivedmyform

45

APPENDIX 2. CLAIM FILE RECORD SHEET

Date Letter Phone

To From To From


6/2/18 DLAUnit,FlowersHill Claimformand lettersfromGP andconsultant

11/2/18 JennyinClaimsSectionDLAUnit,FlowersHill0117949671

Shesaidtheyhad receivedmyform

EXAMPLE

EXAMPLE

46

CLAIM FILE RECORD SHEET

Date Letter Phone

To From To From


47

APPENDIX 3. MEDICAL VISIT RECORD SHEET

Date of healthcare professional’s visit

Time healthcare professional arrived

Time healthcare professional left

Who else was present?

Didyoufeelyouhadtimetoanswerthehealthcareprofessional’squestionsfully? Yes / No ifno,pleasegivedetails.

Didthehealthcareprofessionalphrasequestionsinawaythatsuggesteda particularanswer?Yes / No Ifyes,pleasegivedetails.

Didanythingthehealthcareprofessionaldo,oraskyourchildtodo,causeyourchildpain? Yes / No ifyes,pleasegivedetails,includingwhetheryourchildmentionedtheywereinpain.

Anythingelseyouwishtorecord(continueoverleaforonanewsheetifyouneedto).

Signed(yoursignature) Date

Signed(friendorcarerwhowaspresent) Date

48

APPENDIX 4. HEALTH PROFESSIONAL’S SHEET

Information for healthcare professionals providing evidence about a Disability Living Allowance claim for the DWP

Inordertomakeafairdecisionaboutaclaim,theDWPrequiresveryspecific evidencefromhealthprofessionals.

1. The Agency wishes to know:

• lengthoftimeoverwhichthepatienthasbeentreated

• confirmationofthediagnoses(notjustIBDdiagnosis)

• likelyfutureclinicalcourse

Howeverthemostimportantinformationisadescriptionoftheconsequences ofsymptomsandtheircause.Forexample:

Symptom

Weaknessandlethargyduetoanaemiafromchronicdiseaseandbloodloss.

Effect

Breathlessandunsteady,evenwhenwalkingashortdistanceorusingstairs. Poorconcentration;veryslowperformingdailyactivities;needshelptotake medicationandsafelycarryoutactivitiesofdailylivingsuchgettinginandout ofbed.

2. Inordertohelpthehealthprofessionalsupplythisevidence,onthereverseof thissheetisachecklistofactivitiesofdailyliving.Thepatient’sparentorcarer mayhavealreadycompletedthisform.Youmaywishtogothroughitwiththem.

3. Parentsorcarersmaynothavepreviouslyrevealedtotheirchild’shealth professionaltheextenttowhichthediseaseaffectstheirchild’severydaytheir life.Thismaybebecausemuchoftheadditionalcaretheyprovideforthechild isinconnectionwithnon–medicalactivitiessuchasschool,socialactivities, washing,dressing,etc.

4. ItisimportanttobearinmindthatUlcerativeColitisandCrohn’sDiseaseare largely‘hidden’conditions–thedisabilitieswhicharisefromthemarenot usuallyobvious.Theevidencefromhealthprofessionalscanhelpmakeitclear thatthisdoesnotreducetheirimportance.

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COMPONENTS AND RATES OF DLA

Itneedstobeshownthatthechild’sneedforattentionorsupervisionissubstantiallyinexcessofthatofotherchildrenofthesameagewhodonothaveahealthconditionordisability.

Lower rate care

Forchildrenwhoreasonablyneedhelp(eveniftheydon’tpresentlygetit) foratleastanhour,onmostdays.Thishelpcanbespreadoutthroughout theday.

Middle rate care

Forchildrenwhoreasonablyneed(eveniftheydon’tpresentlygetit):

• helpwithpersonalcareseveraltimesthroughouttheday,or

• frequentorregularsupervisionthroughoutthedaytoavoiddanger,or

• helpwithpersonalcareatleasttwiceanight,oronceforatleast 20minutes,or

• someoneawaketowatchoverthematleasttwiceanight,oronceforatleast20minutes

Higher rate care

Forchildrenwhoreasonablyneedhelp(eveniftheydon’tpresentlygetit)duringthedayandduringthenight,asdescribedforthemiddlerate.

Lower rate mobility

Forchildrenaged5orover,whocanwalkbutneedsomeonetoeither superviseorguidetheminplacestheyareunfamiliarwith.

Higher rate mobility

Forchildrenaged3orover,whoareunabletowalkor‘virtuallyunabletowalk’.Thisisoftentakentomeanchildrenwhocannotwalkmorethan50yardsatareasonablepacewithoutpain,fatigueorbreathlessness.

50

CHECKLIST for the parent/carer to complete concerning their child, to help the health professional’s

understanding of the problems their child is experiencing.

Activity Verybriefdetailsoftheproblemyourchildhadwiththisactivity,includingvariability.‘Wakes up in the night because of abdominal and joint pains. At least once a night, sometimes four or more times’

Walkingoutdoors

Ifyourchildneedssomeonewiththemwhentheyareoutdoors

Someonekeepinganeyeon yourchildYourchild’sdevelopment

Waking,gettingupandgoing tobed

Washingandbathing

Dressingandundressing

Helpwithtoiletneeds

Communicatingwithotherpeople

Eatinganddrinking

Helpwithmedication

Helpwiththerapy

Helpwithmedicalequipment

Blackouts,fitsandseizures

Yourchild’smentalhealth

Movement,co–ordinationand movingaboutindoors

Whenyourchildisinbedatnight

Socialandleisureactivitiesinthedayandtheevening

51

NOTES...

52

NOTES...

HELP AND SUPPORT FROM CROHN’S & COLITIS UK Weproduceover50informationsheets,bookletsandguidesaboutallaspectsof

Crohn’sDisease,UlcerativeColitisandotherformsofInflammatoryBowelDisease(IBD).Theseareavailabletodownloadforfreeonourwebsite: www.crohnsandcolitis.org.uk/publications

You may be particularly interested in the following publications:

• IBDinChildren:AParent’sGuide

• ChildrenandYoungPeoplewithIBD:AGuideforSchools

• ClaimingPersonalIndependencePayment(PIP)

• LivingWithIBD

• FatigueandIBD

• Transition:MovingtoAdultCare

If you would like a printed copy of any of our publications, please contact our Helpline-aconfidentialserviceprovidinginformationandsupporttoanyoneaffected by IBD.

Our team can:

• helpyouunderstandmoreaboutIBD,diagnosisandtreatmentoptions

• provideinformationtohelpyourchildtolivewellwiththeircondition

• helpyouunderstandandaccessdisabilitybenefits

• betheretolistenifyouneedsomeonetotalkto

• putyouintouchwithatrainedsupportvolunteerwhohasapersonal experienceofIBD

Contactusbytelephoneon0300 222 [email protected]

ADVICE ABOUT DISABILITY BENEFITS FROM CROHN’S & COLITIS UK

Ifyouarelookingforadviceaboutdisabilitybenefits,youcanarrangean appointmentwithoneofourtrainedvolunteers.Theycanprovidegeneralguidanceabouteligibility,fillingintheformorrequestingamandatoryreconsiderationifyouaren’tsuccessful.Althoughtherewon’tbetimeforthevolunteertogothroughtheentireformindetail,theywillbeabletohelptoidentifyyourchild’scareandmobilityneeds.Callslastapproximately30minutes.Appointmentscanbemadebycallingthe Information Serviceon0300 222 5700.

PARENT TO PARENT HELPLINE ThishelplineenablesparentsofchildrenwithIBD,uptoandincludingage25,totalk

onthephoneinconfidencetooneofourparentvolunteers.

ParentvolunteersallhaveachildwithIBDandreceiveongoingtrainingtolistentootherparents,toofferemotionalsupportandtoprovidebasicinformation.TheyareavailabletoofferalisteningearTuesdayafternoonsandWednesdayevenings,byappointment.Callsusuallylastaround30-40minutes.YoucanmakeabookingbycallingtheInformation Service on 0300 222 5700.

http://www.crohnsandcolitis.org.uk/publications

Crohn’s&ColitisUKpublicationsareresearch-basedandproducedinconsultationwithpatients,medicaladvisersandotherhealthorassociatedprofessionals.Theyarepreparedasgeneralinformationonasubjectandarenotintendedtoreplacespecificadvicefromyourowndoctororanyotherprofessional.Crohn’s&ColitisUKdoesnotendorseorrecommendanyproductsmentioned.

Crohn’s&ColitisUKisanaccreditedmemberoftheInformationStandardschemeforHealthandSocialcareinformationproducers.Formoreinformationsee www.crohnsandcolitis.org.uk andtheInformationStandardwebsite:www.england.nhs.uk/tis.

Wehopethatyouhavefoundthisleaflethelpfulandrelevant.Ifyouwould wlikemoreinformationaboutthesourcesofevidenceonwhichitisbased,or detailsofanyconflictsofinterest,orifyouhaveanycommentsorsuggestionsforimprovements,pleaseemailthePublicationsTeamatpublications@crohnsandcolitis.org.uk.YoucanalsowritetousatCrohn’s&ColitisUK,1BishopSquare,Hatfield,Herts,AL109NEorcontactusthroughthe Information Line:0300 222 5700.

Follow us

Crohn’sandColitisUKistheworkingnamefortheNationalAssociationforColitisandCrohn’sDisease.CharityregisteredinEnglandandWalesNumber1117148,ScotlandNumberSC038632.AcompanylimitedbyguaranteeinEngland:Companynumber5973370.

1 Bishops Square | Hatfield | Herts | AL10 9NE | [email protected] | crohnsandcolitis.org.uk | 0300 222 5700

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ABOUT CROHN’S & COLITIS UK Weareanational charityestablishedin1979,fightingforimprovedlivestodayandaworldfreefromCrohn’sandColitistomorrow.Wehave40,000membersand50LocalNetworksthroughouttheUK.Membershipstartsfrom£15peryearwithconcessionaryratesforanyoneexperiencingfinancialhardshiporonalowincome.

Thispublicationisavailablefreeofcharge,butwewouldnotbeabletodothiswithoutoursupportersandmembers.PleaseconsidermakingadonationorbecomingamemberofCrohn’s&ColitisUK. Tofindouthowcall01727 734465orvisitwww.crohnsandcolitis.org.uk

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