Ifyouareanewreader,welcome!OurmonthlyIn Touche-newsletterisyourgotosourceforthelatest updatesfromtheNationalKidneyFederation
Whetheryou’reapatient,familymembera healthcareprofessionalorasupporter,this newsletterisdesignedtokeepyouinformedand connected
Eachmonth,wesharethelatestupdatesintherenal world,highlightupcomingeventsandcampaigns andprovideupdatesontheworkwe’redoingto supportkidneypatientsacrosstheUK.
You’llalsofindopportunitiestogetinvolved, whetherthroughfundraisingorsimplytohelpraise awareness
Thankyouforsupportingourcharity,wehopeyou enjoythisissue!
Allthebest, TheNationalKidneyFederation
JoinusonWednesday3rdJuneat5pmforawebinartohelpyoufeelmoreconfidentin managingyourline,whilekeepingupwithyourdaytodayactivities.
JosieCarter,RenalHomeTherapiesManageratBasildon&ThurrockHospitalNHS FoundationTrustwillbejoiningus.Josiebringswithhermorethan15yearsofexperiencein renalnursingandahugeamountofinsightacrossbothcentre-basedandhomedialysis.
We’llcoveressentialtipsonkeepingyourlinecleanandsafe,reducingtheriskofinfection, andhandlingeverydaysituationssuchaswashing,dressing,travellingandstayingactive You’llalsohearhelpfuladvicefromhealthcareprofessionalsandinsightsfrompatients whoaresuccessfullymanagingtheirdialysisalongsidedailylife.
Whetheryou’renewtodialysisorhavebeenmanagingitforsometime,thissessionwill providereassurance,practicalguidanceandtheopportunitytolearnhowothersare maintainingtheirindependence.
Can’tmakethedate?Nottoworry!Allofourwebinarsarerecordedandwillbeuploaded toourwebsiteafterthesessionhasended.Wewillkeepyouupdatedoncethewebinaris available.
DidyouknowtheNationalKidneyFederationhasa YouTubechannelpackedwithhelpfulvideosfor kidneypatients,familiesandhealthcare professionals?
Fromexpert-ledwebinarsandpatientstoriesto practicaladviceonlivingwellwithkidneydisease, there’ssomethingforeveryone.
Watch,learnandstayinformedanddon’tforgettosubscribe: www.youtube.com/@nationalkidneyfederation5995/videos
ThenextAll-PartyParliamentaryKidneyGroup(APPKG)meeting,chairedbyJoWhiteMP,will takeplaceonTuesday16Juneat5pm,PortcullisHouse,Westminster.
Morethan30,000peopleacrosstheUKrelyondialysistostayalive.Formany,in-centredialysis meanstravellingtothehospitalthreetimesaweekforfour-hourtreatmentsessionswithmajor impactsondailylife,physicalhealthandmentalwellbeing
This meeting will bring together patients, clinicians, charities and policymakers from across the kidneycommunitytodiscusswhatneedstochangetoimproveaccesstoandsupportforhome dialysis.
Peopleonhomedialysishavebeenshowntohaveabetterqualityoflifecomparedtothose dialysinginhospital,possiblyduetothemorecomfortableandflexibletreatmentschedulethat hometherapiescanoffer.Homedialysisalsoallowsforlongerandmorefrequentsessionsthat canleadtobetteroutcomes,includingsurvival,andquickerrecovery.
WehopetohaveasmanyMPsaspossibleattendthemeetingonTuesday16June2026.Ifyou’re ableto,pleasecontactyourlocalMPbyemailbeforeTuesday9June2026toencouragethem toattend.
Ourlettertemplatecanbefoundonourcampaignpageviaourwebsitehere: www.kidney.org.uk/appkg-meetings
YoucanalsofindyourMP’scontactdetailsonourwebsitebyselectingthelinktothe Governmentwebsiteandenteringyourpostcode.
NORTHAMPTONSHIREKPAANDNKF TEAMUPTOSUPPORTKIDNEYPATIENTS TheNorthamptonshireKidneyPatient Association(KPA)andtheNationalKidney Federation(NKF)recentlycametogetherina jointfundraisingeffort,demonstratingthe valueofcollaborationatatimewhen fundraisingopportunitiesarebecoming increasinglychallengingforcharitiesand voluntaryorganisations.
Jordan,whosemother-in-lawwasrecently diagnosedwithkidneydisease,decidedtotake ontheKetteringHalfMarathonalongsidetwo friends(TomandJames)toraisemoneyforboth charities Seeingfirst-handtheimpactkidney diseasehashadonhismother-in-lawandthe widerfamilyinspiredJordantodosomething meaningfultosupportotherslivingwiththe condition.
Speakingaboutthechallenge,Jordanexplained thatthediagnosishasbeenincrediblytoughfor thefamily,andrunningthehalfmarathonfeltlike apositivewaytogivebackwhileraising awarenessofkidneydiseaseandthesupport availabletopatientsandtheirlovedones.
Thefundraisingefforthighlightstheimportance ofKPAsandnationalcharitiesworkingtogether. Inthecurrentfinancialclimate,manycharities arefindingithardertosecurefundingand attractsupportforfundraisingactivities.By collaborating,organisationscanshareresources, createmoreopportunities,andstrengthenthe supportavailabletokidneypatientsandtheir familiesacrossthecountry.
ThepartnershipbetweentheNorthamptonshire KPAandtheNKFshowshowlocalandnational organisationscansuccessfullyworktogetherto makeagreaterimpact.
servicesprovidedbybothcharities.
Anyoneinterestedintakingpartin fundraisingeventscanfind sign-upinformationonthe NKFwebsite: https://shorturl.at/CpSXz
Thiscollaborativefundraisingopportunity isavailabletoallKPAs,andany associationinterestedinraisingmoney togetherwiththeNKFisencouragedto contactChrisTalbotat chris@kidney.org.ukformoreinformation.
Pictured:Jordan,TomandJames
Funmi,theViceChairoftheRoyalFreeHospital KidneyPatientAssociation(RFHKPA),was recentlyawardedanMBEinrecognitionofher work.
“ReceivingmyMBEinrecognitionofmyworkwith theLondonKidneyNetworkwastrulyoneofthe mosthumblingmomentsofmyjourney.Visiting Windsorwassurreal,steepedinhistory,yetfilled withsuchpersonalmeaning.Itwasanabsolute honourandprivilegetostandthere,representing notjustmyself,buteverypatientvoiceI’vehad theresponsibilitytoadvocatefor.
MeetingKingCharlesIIIwasahighlightIwon’t forget Wehadabriefchataboutkidneycare, patientadvocacy,andtheimportanceoflistening tolivedexperiences.IliketothinkIgavehima quickmasterclassinwhatreallymatters,though I’mnotsureifhewasmoreimpressedwiththe workorjustrelieved.Ididn’taskhimtojoina committeeonthespot!
Amomentofrecognition,butalsoareminder:the workcontinues.”
TheNKFareabsolutelydelightedtoseeFunmi recognisedwithanMBEforoutstandingworkand commitment Funmiisaregularattendeeofthe LondonRegionalKPANetworkmeetings, representingherKPAandstartedClip-Knix,a companythatsellsaccessibleunderwearfor peoplewithlimitedmobilityandindividuals recoveringfromsurgery.
Afantasticandthoroughlydeserved recognition,congratulationsFunmi!
NICECONSULTATION-BAXDROSTAT Doyouhaveuncontrolledorresistanthypertension?NICE(NationalInstituteforHealthand ClinicalExcellence)arecurrentlyreviewingtheclinicalandcosteffectivenessofthedrug Baxdrostat.Tosupportthereview,theNationalKidneyFederationisgatheringexperiences fromthoseaffectedbyuncontrolledorresistanthypertension.
Ifyou’dliketotalkaboutyourexperiencewithhypertension,pleaseemail nkf@kidney.org.ukbyFriday29 May. th
Ifyoulivewithkidneydiseaseandusedigitaltools—apps,wearables,orpatientportals—to helpmanageyourcare,yourvoicecanhelpshapethefutureofkidney‑caredigitalhealth.
TheNationalKidneyFederationissupportinganewUCLstudycalledUnderstandingDigital HealthEngagementinKidneyCare:AnInterviewStudy,whichaimstofindouthowpeoplewith kidneydiseaseusethesetools,whathelpsorhinderstheiruse,andhowtheyfitintoeveryday care.
UCLteamofresearchersarelookingforadultsaged18oroverwhohavebeendiagnosedwith CKDstages1–5andwhoareabletogiveinformedconsent.Takingpartinvolvesashortonline enrolmentsurveyandasingle30–45minuteonlineorphoneinterviewtalkingaboutwhereyou gethealthinformation,whatinfluencesyourdecisionstostart,continue,orstopusingdigital healthtools,andhowtheyaffectyourkidneycareroutine.
Participantswillreceivea£15Amazonvoucherasthanksfortheirtimeandimportantinsights TheresearchersatUCLHealthInformatics,ledbyPhDcandidateIrinaOsovskayaandProfessor HenryPotts,willuseyourfeedbacktoimprovehowdigitaltoolsaredesigned,introduced,and usedinkidneycare.
Ifyouareinterestedinhavingyourexperiencecounted,followthebelowdetailsorcontact thestudyteamviairina.osovskaya.14@ucl.ac.uk
https://redcap.link/DigitalHealthInKidneyCare
Ifyouwouldliketotakepartinthestudy,pleasecontacttheaboveby1June2026.
Manypeoplewithkidneydiseasealsohave highbloodpressure(hypertension),which needstreatment Highbloodpressureoften doesnotcausesymptoms,butitisvery importanttocontrolit.Ifleftuntreated,itcan furtherdamageyourkidneysandincreasethe riskofseriousproblemssuchasheartattacks andstrokes
Therearemanydifferentmedicines(called antihypertensives)usedtotreathighblood pressure.Manypeopleneedmorethanone typetokeeptheirbloodpressureatasafelevel Yourrenalteamwillworkwithyoutochoose themostsuitabletreatment.Belowisan overviewofcommontypesofbloodpressure medicines.
Betablockers(eg Bisoprolol,Atenolol)
Theseslowyourheartrate,whichlowersblood pressure.Theyarealsousedforsomeheart conditions.However,theymaynotbesuitableif youareveryactiveinsportsorhaveasthmaor otherlungconditions Commonsideeffects includetiredness,coldhandsandfeet,and sleepproblemssuchasvividdreams.
ACEinhibitors(e.g.Ramipril,Enalapril)
Thesemedicinesrelaxandwidenbloodvessels toreducebloodpressure Somepeople developadry,ticklycough;althoughnot dangerous,youshouldreportitsoan alternativecanbeprescribed.Otherside effectsincludedizziness,particularlywhen startingtreatment,aswellasheadachesor diarrhoea.Takingthematbedtimemayhelp withdizziness.Thesemedicinesarenotsafe duringpregnancy.
ARBs(Angiotensinreceptorblockers)(e.g. Losartan,Candesartan)
TheseworksimilarlytoACEinhibitorsby relaxingbloodvessels.Sideeffectsmayinclude dizziness,headaches,diarrhoea,orjointpain. Rarely,allergicreactionssuchasrashesor swellingcanoccur—ifthishappens,seek medicaladviceimmediately.Thesearealso unsafeduringpregnancy.
Calciumchannelblockers(e.g.Amlodipine, Nifedipine)
Thesereducebloodpressurebywidening bloodvessels.Sometypesinteractwith grapefruitjuice,sothisshouldbeavoided. Commonsideeffectsincludeswollenankles, headaches,andconstipation.
Diuretics(watertablets)(e.g.Furosemide, Spironolactone)
Thesehelpyourbodyremoveexcessfluidby increasingurineproduction.Theyareusually takeninthemorning(andatlunchtimeif needed) Sideeffectscaninclude dehydration,dizziness,andchangesin potassiumlevels.
Alphablockers(e.g.Doxazosin)
Theserelaxbloodvesselstolowerblood pressure.Sideeffectsmayincludedizziness, headaches,andswellingintheankles,feet,or fingers.
Othermedicines(eg Hydralazine, Moxonidine)
Thesemaybeusedifbloodpressureremains highdespiteothertreatments.Theycan causesideeffectssuchasfluidretentionand tiredness.
Bloodpressureanddialysis
Forpeopleonhaemodialysis,bloodpressure medicinesmaysometimescauseblood pressuretodroptoolowduringtreatment.If thishappens,yourmedicationortiming(such astakingtabletsatnight)mayneedtobe adjusted.
ContacttheHelplinetorequestahardcopy.
Othertitlesavailableinour“DrugsSeries” Medicationforimmunosuppressionand preventionofinfectionsinkidneypatients Commonlytakendrugsforkidneyfailure Overthecounterdrugs
WhatareSGLT-2Inhibitors? Whatarestatins? Whatdrugsareneededaftera transplant?
EveryentryhelpstheNationalKidneyFederationmakeadifference,allproceedsfromthedraw gotowardsrunningourhelplineandpeersupportservice,supportingthosewhoneeditmost
Byconfirmingyourentry,youareverifyingthatyouare18yearsofageorover Thankyouforyoursupport,andgoodluck! ��
Pleasenote-youmustbe18orovertoenter,andentriescannotbepurchasedusingacredit cardduetotheGamblingCommisionLaw.
Termsandconditions-Byenteringtheraffle,entrantsagreetobeboundbytheserules.For moreinformationvisitthelinkabove.
FUNDRAISING Thepassionanddeterminationshownbyourincredible #KidneyStrutterscontinuestomakeastomp!
Thankstoyourfantasticefforts,morethan£9,000hasalreadybeen raisedandthetotalisstillgrowing!Everymilecompletedandevery donationmadeishelpingtomakeameaningfuldifferenceforkidneypatientsandtheir familiesacrosstheUK.
We’resogratefultoeveryoneparticipating,youtakingpartandfundraisinghelpsuscontinue deliveringvitalfreeservicesforpatientsandadvocatingforimprovedkidneycarenationwide.
Behindeverycharitychallengesignup,there’sareason.Thisis Hilary’s:
“Mymotivewassimple;Ihaveahusbandwho,inJune2022, developedGoodpasture'soutoftheblue,andwentfrombeing astrongfitmaninhisearly70stobeingpermanently exhausted.Afteralongwait,challengingtimesandatorturous hospitaljourney,myhusbandfinallyhadatransplantlatelast July,andIwas,byaminormiracle,agoodenoughmatchtobe alivingdonor.Forasmallcharity,theNKFpuncheswellabove itsweight!Wearenowawayonourfirstholidayinfouryears. WeplantorevisitourfavouriteYorkshireplacesintheDales, theNorthYorkMoorsandonthecoast,andhopefullywewillbe abletodosomewalkstogether,reachingthe72,208stepsto supporttheNKF’sBestFootForwardChallenge.“
TakeinspirationfromHilary,setyourowngoal,andmakeevery stepmatter.
Byjoiningthechallenge,you’llbehelpingtofundfreesupport servicesforkidneypatientsandtheirfamilies,providingadvice, emotionalsupport,andpracticalguidanceatatimewhenit’s neededmost.
WehaveextendedtheBestFootForwardChallengeintoMayand June.RegistertotakepartnowandreceiveapairofFREE challengesockswhenyouraise£10ormore: www.kidney.org.uk/bff2026 Nottakingpartbutstillwanttoshowyoursupport? YoucandonateviaourBestFootForwardChallengeJustGivingpage: www.justgiving.com/campaign/bestfootforward2026
WhyjointheNKF?
Supportvitalpatientservices yourmembershiphelpsfundourfreeHelpline,Peer Support,andadvocacyacrosstheUK Receiveexclusivememberbenefits
Whatyouget
10%OFFVoucherDiscountonselectitemsintheNKFonlineshopplusexclusive memberonlydiscountdays. InvitestospecialNKFeventsanddiscountedentrytoourAnnualEvent. Earlynoticeofupcomingsales,campaigns,eventsandmore
Yourmembershiphelpsdosomuch
KeepourHelplinerunning-theNKFHelplineisalifelinefor thousandsofpatients.Manycallwhentheyneed immediatehelp,guidanceorjustsomeonewho understands.Membershipdonationshelpensurethisfree serviceremainsavailable
Fundeducationalsupport-ourlibraryofkidneyhealth leaflets(PIF-certified)stayscurrentandfreeforpatients, renalunits,andGPs.Yourmembershiphelpsuscreateand distributetheseresourcesnationwide.
Advocateforbettercareandpolicy—withmember supportwecampaignforimprovedkidneycare,influence policy,andpushforaccessibletreatmentsacrosstheUK. SupportlocalKidneyPatientAssociations(KPAs) your contributionhelpssustainover50KPAsacrosstheUK, strengtheninglocalsupportnetworksandpatientvoices
Together, we can bring hope and support to kidney patients and their families across the UK. Join now https://bit.ly/nkfmembership
NKF KPA MEMBERS Currentlythereare54KidneyPatientAssociations(KPAs) whoaremembersoftheNKF Pleasefindthedetails belowoftheKPAsavailableorformoreinformationplease contacttheNKFofficeon01909544999oremail chris@kidney.org.uk.
ChrisTalbot
NKFMembershipDevelopmentLead
IfyouareaKPAthatwouldliketobecomeanNKFmember, pleasecontactchris@kidneyorgukorcall07908845713 WeareproudtosupportKPAsandtobethepatient voiceacrosstheUK.
FindyourlocalKPAtoday: www.kidney.org.uk/kidney-patient-associations
Discoveropportunitiestoshareyourexperienceand supportkidneyresearch.
TheNKFhavecreatedapageonlinewhereyoucan exploreallthecurrentopportunitiestotakepartin studies,surveysandinterviewsrunbyhealthcare professionalsandmedicalstudents
Theseprojectsaimtodeepenunderstandingofkidney diseaseandyourinsightscouldmakearealdifference.
https://shorturl.at/Ssw9V
