the kidney peer supporter supporters...the role of the peer supporter the role of the peer supporter...

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–4pmkidneysupport@heartofengland.nhs.uk

TheRoyalWolverhamptonHospitalsNHSTrust

JeanShears 01902695466(officereceptionist)

Aspecificemailaddresshasbeencreatedforpeersupportreferrals.EmailswillbecheckedMonday–Friday9am–5pmRwh-tr.kidneysupport@nhs.net

QueenElizabethHospitalBirmingham

DrClaraDayHaemodialysisCo-ordinator

01213715853(secretary)01213713006

Aspecificemailaddresshasbeencreated.EmailswillbecheckedMonday–Friday8am–4pmkidneysupport@uhb.nhs.uk

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 1499www.kidneyhealth@kidneyresearchuk.org

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:kidneyhealth@kidneyresearchuk.org

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