year one report
HIGH AMMONIA KILLS AND PEOPLE ARE DYING BECAUSE OF OVERLOOKED SYMPTOMS.
LaunchedinMarch2024,the“ThinkAmmonia!” campaignaimstosavelivesbyraisingawarenessof ammoniatestingandencouragingearlier,accurate testing.Motivatedbytheinterestsofourcommunities andthetragicdeathof16yearoldRohanGodhania,this campaignaimstosavelivesbyadvocatingforaccurate ammoniatestingleadingtotimelydiagnosisand treatment.
Whilesystemicchangeischallenging,we’vecollaborated withcommunities,healthcareprofessionals,andpartners totakemeasurableactionstowardthisgoal.
Thisreporthighlightsthefirstyearcampaign achievements;assessingandunderstandingtheUK ammoniatestinglandscape,andidentifyingnextsteps toimprovecare.
“Raisedammoniaisasilentkiller leadingtounexplaineddeaths.Itis araceagainsttime. Aquickandsimpletestmakesallthe difference. Beachangemaker.Think ammonia!Savelives!”
PUSHPA GODHANIA, MOTHER TO ROHAN GODHANIA
ThisisRohan,whosadly diedaged16inAugust 2020fromhighammonia triggeredbyaprotein shake Hehadan undiagnosedUreaCycle Disorder,whichonly cametolightwhenthe recipientofhisdonated liverbecameseriouslyill, asthedisorderhadbeen passedonthroughthe transplant.
600 POSTERS DISPLAYED IN SITES ACROSS THE UK
Co-developedwithseniorIMD healthcareprofessionals,the “ThinkAmmonia!”postersare nowdisplayedinhospitals,GPs, metaboliccentresand universities.
Thehealthcareprofessionalposter explainshowtodiagnose,testand treathighammonia.Thepublic posterfeaturesthekeysymptoms andprovidesguidanceonwhatto doifexperiencingthem.Both featureaQRcodelinkedtoour ammoniaguidancehub.
THE QR CODES HAVE BEEN SCANNED 211 TIMES.
REACHED
100,000 PEOPLE WITH THE THINK AMMONIA COMMUNITY VIDEOS
Communityvoiceispowerfuland isactivelyshapingchange.This videoseriesshowstherealstories ofhighammoniaandprovide recommendationsfromfamilies onhowtoimproveoutcomes.
Wehaveusedthesevideosin presentationstohealthcare professionals,policymakers andindustry.
PRESENTED THE THINK AMMONIA CAMPAIGN AT 25 EVENTS
Thisincluded: Ahighammoniahealthcare professionaltrainingeventwith 333healthcareprofessionals. AUniversityofCambridgeevent fortraineedoctorswith60 attendees. TheMetabERNconferencein Budapestwith100attendees rangingfromcliniciansto researchers.
TRANSLATED MATERIALS INTO EIGHT LANGUAGES
Thinkammoniaresourceshavebeen translatedItalian,Spanish,Greek, Urdu,Tamil,Sinhala,Dari&Pashto.
Thesehavebeensharedacross Italy,SriLanka,Peru,Pakistan, AfghanistanandGreecewithour Englishpostersalsosharedinthe USAandCanada.
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FACILITATED IMPORTANT CONVERSATIONS:
Thefollowingarecommentsfrom ourThinkAmmonia,community videos:
“Suchvaluablemedicalknowledgeandonlyonemedical personnelthoughttocheck?Wow!WellIknowI'llbe tellingallnewparents!”
“Thesamehappenedtous.OurdaughterhasMMA,andwebelieve thatifherammoniahadbeentestedearlier,herstorycouldhave beenverydifferent.Thisissuchanimportantcampaign!”
HOSTED AN EVENT FOR THE UREA CYCLE DISORDER (UCD)
COMMUNITY:
TheUCDDaywasattendedby39 people,representingfiveofthe eightUCDs.Thiswasadayfor connectionandcommunity, facilitatingimpactfulconversations abouthowtonavigatelifewitha UCD.
OurThinkAmmoniacampaignwas abighitwithattendees,dueto UCDscausinghighammonia.Many attendeessharedthattheyare gratefulformovementonatopic thatissoclosetotheirhearts.Over thedaysomesharedtheirown experienceswithhighammonia andwerememberedthosewe havelost.
MembersofourUCD communityholdingthe ThinkAmmonia posters.Attendeestook thesepostersand sharedthemintheir localareaincluding GPs&hospitals.
METHODS
TheThinkAmmoniacampaignisabout morethanjustraisingawareness;it’s drivingmeasurablechangetoimprove outcomesforourcommunities. That'swhywesentFOIrequeststoUK hospitalsonammoniatestingandsample rejectiontoidentifycentresinneedof support.
Theseinsightswillguidethenextphaseof thecampaignwhichwillfocuson improvingpracticesatthesecentres.We willthenrepeattheFOIrequestsfollowing thisworktoensureammoniatestinghas increasedandsamplerejectionhas decreased.
WhatareFOIs?
FOI(FreedomofInformation)requestslet anyoneaskpublicorganisations(likethe NHS)forinformationtheyhold.It’saway togetofficialfactsordatathataren’t alreadypubliclyavailable.
RESULTS
Wecollecteddatafrom41hospitals, identifiedthroughexpertinput,surveys, roundtables,communityexperiences andgeographicaldistribution. Ammoniatestingpracticesand reliabilityvariedwidely Ofthese,19 sitesprovidedfullycomparabledata, while21sharedpartialdataandone site’sdatacouldnotbeused.
Numberoftestsrequested:
Thisrangedfrom64toover2000over 2022-23 Forthehospitalsthatprovided alldata,theaveragenumberrequested was620persite.
Numberoftestsrejected
Somehospitalsreportedrejection ratesofmorethan50%,whileothers hadnoneatall.Onaverage,aboutone inseventestswererejectedin hospitalsthatprovidedalldata,raising concernsaboutpotentialdelaysin diagnosisandtreatment
Ammoniatestsvspatient attendances
Inmanyhospitals,ammoniatests wereorderedinunder1%ofpatient attendances.Siteswithpartialdata showedsimilarpatterns,though missingdetailsontestrejectionsand patientnumberslimitedcomparisons.
SUMMARY
Thedatarevealsahighlyinconsistent approachtoammoniatestingacrossthe UK.Somehospitalsarerequestingtests regularly,whileothersofferthemtofewer than1%ofpatients.Testrejectionrates alsovarysignificantly,withonesite reportingarateof55%,andothers exceeding20%.
Manyhospitalscouldnotprovidebasic informationsuchastestrejection numbersortotalpatientattendances, makingitdifficulttoassessgapsincare. Thishighlightstheneedforclearer guidance,bettertraining,andnational datastandardstoensuretimely,reliable ammoniatestingforthosewhoneedit.
ProvidingeducationtotheRoyal CollegeofEmergencyMedicine:
WorkingwithBritishInherited MetabolicDisorderDiseaseGroup (BIMDG)expertstosubmit educationalmaterialstotheRoyal CollegeofEmergencyMedicine,which setstrainingstandardsandsupports postgraduatedoctorsinEmergency Medicine.
Deliveringwebinarsandtraining acrosstheUKandinternationally:
Workingwithbothnationaland internationalpartnerstodeliver webinarsandtrainingtohealthcare professionals,includingawebinar organisedincollaborationwith MetabERNfordoctorsacrossEurope
Researchintoacquiredconditions causativeofhighammoniathrough transplant:
Wehavecommissionedaliterature reviewinvestigatingcasesof conditionscausativeofhighammonia acquiredthroughtransplant Dependentontheresults,thismay enableustoadvocateforpretransplanttestingtoensurethedonor isnotlivingundiagnosedwithoneof theseconditions
DistributingThinkAmmonia postersandInformationHub:
DistributingThinkAmmoniapostersto sitesacrosstheUKtobuildawareness anddrivetraffictoourInformation Hub.Wehavealreadyreceived requestsfromfivesitesfollowingour presentationattheBIMDGconference.
Supportinginternational adoption:
Weareworkingwithpartners worldwidetoadaptthecampaignfor theirregions,sharinglearningand resourcestostrengthenlocalefforts Thiscollaborationaimstoensurethat outcomesforpeopleaffectedbyhigh ammoniaimprovenotonlynationally butalsointernationally.
Keepingthecommunityatthe heart:
Wewillcontinuetokeepthe communityattheheartofthe campaign,ensuringthatlived experienceshapesourpriorities.By listeningtofamilies,peoplelivingwith conditionsthatcausehighammonia, wecanensureouractionsreflectreal needsanddrivemeaningfulchange Testingreport
WewillpublishapaperusingtheFOI dataonammoniatestingand samplerejection,providingthefirst comprehensiveoverviewofcurrent practice Bysharingthisevidence, weaimtoraiseawareness, influenceguidelines,andsupport improvementsincare.
Webinarsandtraining: Fancyworkingwithustoraiseawarenessabout highammonia?
Getintouch!Wecanworktogethertocreate bespoketrainingandwebinarstoincrease awarenessinyoursetting.Thiscanbein-personor online.
Sharetheposters: Ourposters,co-designedwithexpertsfromthe BIMDGensurepeopleknowthesigns,testearlier andsavelives.
Getthemshared.Thesehavenowbeensharedby healthcareprofessionals,communitymembers andothercharities
Bringthecampaigntoyourcountry: Sofar,we’vehadThinkAmmoniamaterials translatedintoeightlanguagesandsharedaround theworld.
Join“ThinkAmmonia:International”.Workwithusto adaptthecampaigntoyourcountry Wecanprovidea rangeofresourcesandexpertisetosupportyou.
FundThinkAmmonia: SupportourworkbyfundingtheThinkAmmonia campaign.
Helpmakechange!Affectingsystemicchangeisno smallendeavor.Helpresourceourworkinthisarea!
Anyofthissoundgood?
Emailjonathan@metabolicsupportuk.orgtogetinvolved!
