the kidney peer supporter supporters...the role of the peer supporter the role of the peer supporter...
TRANSCRIPT
The Kidney Peer Supporter
Handbook
Contents
Introduction
Peer Support• WhatisPeerSupport?
• BenefitsofPeerSupportforPeoplewithChronic KidneyDisease
• TheRoleofthePeerSupporter
What if you Need Support?
Useful Contacts and Resources
Acknowledgements
IntroductionTheaimofthishandbookistoprovideashortpracticalguideonkidneyPeerSupport.
Theguideisintendedtogivethosekidneypatientsandcarerswho’vebeenthroughthePeerSupporttrainingprogramme,togetherwithstaffworkinginkidneyservicesanunderstandingof:
• WhatPeerSupportis• WhatPeerSupportsetsouttoachieve• ThebenefitsofPeerSupport• TheroleofthePeerSupporter• Whereyoucangetsupport
ItalsoprovidessomeusefulsourcesofinformationandcontactnumberswhenprovidingPeerSupport.
Thehandbookhasbeenproducedbyarangeofpeopleinvolvedinkidneycare,includingkidneypatients,carers,doctorsandnurses.
Peer SupportNobodyunderstandswhatpeoplewithchronickidneydiseasearegoingthroughaswellaspeoplewhohavegonethroughtheexperiencethemselves.
TheKidneyPeerSupportserviceinvolveskidneypatientshelpingotherkidneypatientswhoarefacingsimilarsituations.Itaimstogiveshorttermpractical,emotionalandsocialsupporttopeoplewithchronickidneydisease,theirfamiliesorcarersbasedoncommonexperiences.PeerSupportoffersanopportunitytohaveaone-to-onechatandsharepersonalexperiencesandstorieseitherfacetofaceoroverthetelephonewithanexperiencedkidneypatientorcarer.
PeerSupportersareideallyindividualswhosharesimilarlifeexperiences,lifestylesandareapproximatelythesameage.However,itisnotalwayspossibletomatchpeopleinthisway,dependingonwhohasbeentrainedtobeaPeerSupporter,soyoumayfindthatsometimesyouareaskedtotalktosomeonewhohashadslightlydifferentexperiencestoyou.Oftenthesepeopleneedjustafriendlychat,butifyoufeeltheyneedspecificinformationthatyoucannotoffer,pleasecontactyourPeerSupportorganiser.
PeerSupportisintendedtocomplementthecareandeducationpatientsandcarersreceivefromtheirkidneyhealthcareteam.Itisthereforeanadditionalservicewhichisavailableifwanted.Itisnotasubstitutefortheprofessionalteamandyoushouldnotbeansweringqueriesbettersuitedtootherse.g.aboutmedication.
Benefits of Peer Support for chronic kidney diseaseItisimportantforpeoplewithalongtermconditionsuchaschronickidneydiseasetobegivenhighqualitysupportandinformationwhenmakingdecisionsabouttheirtreatment.
PeerSupportoffersbenefitsbothforthepeopleusingthePeerSupportserviceandforthePeerSupportersthemselves.
People using Peer Support Services Peer Supporters
Reassuranceofknowingtheyarenotontheirown
Increasedconfidencetomakedecisionsandhavebettercontroloveryourlife
Sharingexperiencesofwhatworkswellandishelpful
Goodsourceofencouragement
Cantalktosomeonewhounderstandsthechallengesthey’refacing
Abletouseyourownpersonalexperiencetogiveothersencouragement
Positiveexperiencebyhavingtheopportunitytocontributeandgivesomethingback
Drawsatisfactionfromsupportingotherstohelpthemselves
Helpsyougainconfidence
The role of the Peer SupporterTheroleofthePeerSupporteraimstobuilduponanindividual’sexperienceandstrengths.Thefollowingtablegivesexamplesofkeyexperiences,skillsandqualitiesneeded,togetherwithalistofrequirementsandadescriptionofthePeerSupporterrole.
Experiences • Relevantconditionandtreatmentexperiencefromavarietybackgrounds.Thiscanincludecarers.
Skills and qualities
• Goodcommunication• Sympatheticlistener• Empatheticandnon-judgementalapproach• Abilitytorelatetoandmakeothersfeelatease• Understandsandisabletoexplainaboutkidneydisease,
itstreatmentsorproceduresinsimpleterms• Abilitytogiveencouragement• Abilitytodealwithpossiblydifficultandsensitive
situations• Honestandtrustworthy• Understandstheimportanceofmaintaining
confidentialityandwhentodiscloseconcerns• Hasknowledgeofwheretoaccessothersourcesof
informationorsupport• AwarenessoftheboundariesofPeerSupport
Role description
• Provideavoluntaryservicetokidneypatients,theirfamiliesorcarers
• Offershort-termconfidentialsupportandhelptofellowpatientswithkidneydiseaseandtheirfamiliesand/orcarers
• Listentofellowpatients’experiencesinanopen,non-judgementalandempatheticway
• Shareopenlyandhonestlywhereappropriateownpersonallifeexperienceofkidneydisease,itstreatmentsandpracticalknowledgeofday-to-dayissues
• Providepracticalinformationandsignposting• Supportotherstocareforthemselvesandfollow
medicaladvice,withoutgivingmedicaladvice• Beinvolvedinavarietyofpatienteducationactivity
sessions• Discussgeneralquestionsonmakingtreatmentdecisions
andlifestyle• PromotethePeerSupportservice• CompleteandmaintainaPeerSupportcontactlog• MaintainregularcontactwithidentifiedPeerSupport
organiser/linknurseandescalateanyconcerns
Other requirements
• Thesevarydependingwhichhospitalyoutraininandyouwillbegivenmoredetailedinformationaboutthis
• ClearancefromtheCriminalRecordsBureau(CRB)• CompletedlocalTrustvolunteerapplicationform• SuccessfulcompletionofthePeerSupporttraining
sessions• LocalTrustinductionsession
What if you need support?IfyouhaveanyworriesaboutwhattodoorhowtodealwithasituationpleasecontactyourlocalPeerSupportorganiser(seecontactdetailsattheendofthehandbook)atyourhospitalTrust.
Youmayfindithelpfultocontactthemwhenyoufeel:
• Morehelporspecialistsupportmaybeneeded• Youareunabletobehonestandimpartial• Worriedthatthepersonmightcometoharm• Concernedaboutyourowncircumstances• Youarenot‘hittingitoff’withthepersonyouhavebeenaskedtosupport• Youfeelthatthepatientbeingsupportedisnotbehavinginanappropriate
waytoyouasavolunteere.g.frequentphonecalls
YourlocalPeerSupportorganiserwillbeabletodecideonthebestcourseofaction.Pleaserememberthatifyouhaveanyanxietiesaboutwhetherapersonneedshelpfromanothermemberofthekidneyteam,itisimportantforyoutoreferitontooneofthekidneydoctorsornurses.Weasprofessionalscanalwaysapproachtheissueofconcernwiththepatientwithoutimplicatingyouinanyway.
Rememberthatyouaredoingthisroleasavolunteer.Yourunitwillnotbeatallupsetifyoufeelthatyouareunabletosupportorcontactaparticularpatient.Pleaseletthemknowifyoufeeluncomfortableorareunabletooffersupportataparticularperiodoftime.
TheunitwillnevergiveoutyourcontactdetailstoapatientrequiringPeerSupport:youcanobviouslydosoifyouwishto,butdonotfeelunderanypressuretodoso.IfthesupportedpatientwishestocontactyouagaintheycanalwaysdosoviathehospitalPeerSupportorganiser.
YourunitmaywishtocontactthesupportedpatientafteryouhavehadcontactwiththemtocheckwhethertheyfoundthePeerSupportservicehelpful.Thisisnotintendedtocheckuponyoubuttoallowcollectionofdata(virtuallyalwaysverypositive)topromotePeerSupportandifnecessaryapplyforfurtherfundingtohelpruntheservice.YoumayalsofindthatyouareaskedtotakepartinresearchaboutPeerSupport.Youobviouslydonothavetodothisifyoudonotwishto.
Useful contactsHospital Trust Lead(s) Contact Details
HeartofEnglandNHSFoundationTrust
AnnetteDoddsBridgetFerrisDrHughRayner
01214242677
Aspecificemailaddresshasbeencreatedforpeersupportreferrals.EmailswillbecheckedMonday–Friday8am–[email protected]
TheRoyalWolverhamptonHospitalsNHSTrust
JeanShears 01902695466(officereceptionist)
Aspecificemailaddresshasbeencreatedforpeersupportreferrals.EmailswillbecheckedMonday–Friday9am–[email protected]
QueenElizabethHospitalBirmingham
DrClaraDayHaemodialysisCo-ordinator
01213715853(secretary)01213713006
Aspecificemailaddresshasbeencreated.EmailswillbecheckedMonday–Friday8am–[email protected]
Useful sources of informationArangeofinformationleafletsandfactsheetsareavailablefromyourlocalkidneyunit,KidneyPatients’Associationorfurtherkidneyinformationcanbeobtainedfrom:
Support Groups
There are a number of self help, patients’ associations and support groups:
British Kidney Patient Association (BKPA)Tel: 01420 472021/2www.britishkidney-pa.co.uk
National Kidney FederationTel: 01909 544999Helpline: 0845 601 0209www.kidney.org.uk
Queen Elizabeth Hospital Birmingham Kidney Patients’ Associationwww.kidneymatters.co.uk
Transplant Support NetworkAdvice line: 0800 027 4490www.transplantsupportnetwork.org.uk
Polycystic Kidney Disease CharityHelpline: 01388 665004www.pkdcharity.co.uk
Diabetes UKTel: 020 7424 1000Helpline: 0845 1202 960www.diabetes.org.uk
Expert Patient ProgrammeTel: 01886 833186www.expertpatients.nhs.uk
Other Useful Kidney Resources
Kidney Research UKTel: 0845 300 [email protected]
Kidney AllianceTel: 01483 724 472www.kidneyalliance.org
Renal PatientView provides online information about renal patients’ diagnosis, treatment and latest test results. Patients can share this information with anyone they want, and view it from anywhere in the world. PatientView is available to you if you wish to participate.www.renalpatientview.org
“Living with Kidney Disease: What should you know” are two DVDs aimed at raising awareness and education to support anyone who has been told by their doctor that they have kidney damage. The first DVD is for people who have just been diagnosed with chronic kidney disease. The second DVD offers practical advice for people with advanced kidney disease. There are options to view the DVDs with subtitles in English and audio in Bengali, English, Gujarati, Hindi, Punjabi and Urdu. Copies can obtained from Kidney Research UK’s health information lineTel: 0845 300 1499Email:[email protected]
Eurodial is an international dialysis organisation dedicated to the care and mobility of dialysis patients in Europe.www.eurodial.org
The Kidney Patient Guide provides information for people with kidney failure.www.kidneypatientguide.org.uk
This handbook can be found on the West Midlands Renal Network’s website www.wmrn.co.uk
AcknowledgementsThishandbookhasbeenproducedbymembersoftheWestMidlandsRenalNetworkPeerSupportSteeringGroup.
TheWestMidlandsRenalNetworkwouldliketothank:
ThePeerSupportSteeringGroupMembersfortheirtime,guidanceandexpertise.
Dr Clara DayUniversityHospitalsBirminghamNHSFoundationTrustAnnette DoddsHeartofEnglandNHSFoundationHospitalBridget FerrisHeartofEnglandNHSFoundationHospitalHannah Fisher PatientRepresentative,HeartofEnglandNHSFoundationTrustNick FlintQueenElizabethHospitalKidneyPatients’AssociationJean ShearsRoyalWolverhamptonHospitalsNHSTrustCarol WillisWestMidlandsRenalNetwork
ThishandbookhasbeenproducedaspartofaNHSKidneyCareproject