Neurological Conditions Network. Engagement exercise summary report

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Table of contents Page

Foreword.............................................................................................4

Background.........................................................................................6 Engagement......................................................................................6

Results.................................................................................................8 Summaryofconditionscovered.......................................................8

Locationofsurveyrespondents........................................................9

Thestory.........................................................................................10

Interpretingthestory.......................................................................10

Recommendations ........................................................................ 11

Next steps ........................................................................................14

Membership of the Neurological Conditions Network ......16

Glossary ...........................................................................................17

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ForewordOnbehalfoftheNeurologicalConditionsNetwork,Iampleasedtopresentthisreportontheexperiencesofpeoplelivingwithneurologicalconditionsandtheircarers.TheNeurologicalConditionsNetworkwasestablishedinrecognitionofthenumberofpeoplelivingwithneurologicalconditionsandstrivestoensurethebestpossiblequalityoflifeforthoselivingwiththeseconditionsandtheircarers.Tothisend,itisessentialthattheyaregiventheopportunitytotelltheirstoryandthatwelistentotheseexperiences.

ItwaswiththisinmindthattheSpeak out for change experience surveywasdeveloped.Thesurveyaimstoprovideanopportunityforpeopletodescribetheimpactneurologicalconditionshaveontheirlivesandisuniqueinitsholisticfocus.Throughoutthisprocess,Ihavehadtheprivilegeandopportunitytomeetmanypeoplelivingwithneurologicalconditionsandtheircarers,andIamhonouredthatsomanypeoplearewillingtosharetheirexperiences.Theseexperiencesandlifestoriesarebothsoberingandpowerful,andprovideamuchneeded,deeperappreciationoflivingwithaneurologicalcondition.

Thisisthefirsttimeaprojectcoveringsuchawiderangeofneurologicalconditionshasbeenundertakenand,despitethediversenatureoftheconditions,thelifeexperiencessharedtodatehaveconsistentlyrevealedissuesaroundinformation,choiceandcontrol,independence,andtheemotionalimpactofneurologicalconditions.

Thisisnotaone-offexercise,butthebeginningofanongoingdialogue.Werecognisethatthissurveyhasnotreachedeveryoneoreverycondition,butwehope,throughthenetwork,tofurtherdevelopthesurveyandcreatearobustcommunicationprocessthatallowseveryonetoparticipateandcontributetowardstheplanninganddeliveryofservices.

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ThesuccessofthisexercisewouldnothavebeenpossiblewithoutongoingsupportfromMooreStephensManagementConsultantsandIwouldliketoexpresssincerethankstoallthosewhohavebeeninvolved.

Michelle TennysonAssistantDirectorAlliedHealthProfessionsandPersonalandPublicInvolvementChair,NeurologicalConditionsNetwork

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BackgroundNeurologicalconditionscanaffectpeopleofallages.Theyresultfromdamagetothebrain,spinalcolumnornervescausedbyillnessorinjuryandcanbepresentfrombirthorbeginatanytimeoflife.Thereisawiderangeofneurologicalconditionsandtheseimpactonaperson’sdailylifeinavarietyofways,dependingon:

• thenatureofthecondition;• theseverityofthecondition;• theageofthepatientatonsetofthecondition;• otherfactorssuchassupportandfinances.

Theeffectsofneurologicalconditionscanresultinreducedindependenceandimpactoneducation,family,socialrelationshipsandaperson’sabilitytowork.Inrecognitionofthis,theMinisterforHealth,SocialServicesandPublicSafetyannouncedthedevelopmentoftheNeurologicalConditionsNetworktoensurethebestpossiblequalityoflifeforthoselivingwiththeseconditionsandtheircarers.Itisessentialthattheirexperiencesareheard.

Withthisinmind,thenetworkhasbeenestablishedintwophases.Thefirstphasesawanambitiousengagementexercisetoseektheexperiencesandprioritiesofpeoplelivingwithneurologicalconditionsandtheircarers.Adetailedlistofmembersofthefirstphaseofthenetworkcanbefoundonpage16.Theinformationgatheredthroughthisexercisewillinformphasetwo,thedevelopmentofthefinalnetwork.

This report details the background to the work, and the development and implementation of the ongoing engagement. The priority areas and recommendations, based on the first pool of results, are also outlined, as are the next steps.

Engagement

Intakingforwardphaseoneofthenetwork,theobjectivewastodesignamechanismthatwouldallowongoingengagementwithpeople

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livingwithneurologicalconditionsandtheircarers–tolistentotheirexperiencesandprioritiesandusetheinformationgatheredtoinformservicedesignanddelivery.Consequently,thePublicHealthAgencyandHealthandSocialCareBoardcommissionedMooreStephenstodevelopsuchamechanism.

TheSpeak out for change experience surveywasdevelopedusingSenseMakersoftware,creatingasurveythatfocusesontheimpactonqualityoflifewhenlivingwithandcaringforaneurologicalcondition.SenseMaker,aqualitativeresearchtechnique,enablesthecaptureandanalysisofpeople’sexperiencesandstoriesthroughcarefullydevelopedquestionsandthenprovidesqualitativedata.

ThisapproachisinkeepingwiththePublicHealthAgencyandHealthandSocialCareBoard’scommitmenttoPersonalandPublicInvolvementintheplanninganddeliveryofservices.Listeningto,talkingwithandsupportingtheinvolvementofthoselivingwithaneurologicalconditionortheircarersisnecessaryifservicesareto:

• beresponsiveandappropriate;• betailoredtoneed;• beprioritisedcorrectly;• acknowledgepatientrights;• recogniseknowledgeandexpertise;• improvelevelsofservicesatisfaction.

Thesurveyhasbeenpromotedthroughwebsites,email,pressreleasesandaflyerthatwasdisplayedinlibrariesandneurologyclinics.

AssistanceincompletingthesurveywasavailableinfourlibrariesacrossNorthernIreland,atgroupmeetingsandatneurologyclinics.Visitswerealsoarrangedwithserviceusersandcarersatcharitysupportgroupsandintheirownhomes.Thisassistanceisstillavailableviatelephoneoremail(02890321313,neurological.conditions@hscni.net).

Inthisfirstpool,atotalof142surveyswerecompleted.

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Results

Summary of conditions covered

Theexperiencesrecountedwithinthesurveyscamefrompeoplelivingwithawiderangeofconditions(somepeoplehavingmorethanonecondition)andtheircarers.Figure1illustratestherangeofconditionsthatrespondentsreportedinthesurvey.

Figure 1: Neurological conditions that survey respondents reported

Conditionsincludedwithin‘other’were:• Williamssyndrome• Angelmansyndrome• Myotonicdystrophy• Arteriovenousmalformations• Sebaceousnevussyndrome• Stroke• Primarylateralsclerosis• Braininjury• Opticalneuro• Friedreich’sataxia• Musculardystrophy

Brain tumour

Polio

Autism

Epilepsy

Alzheimer's / Dementia

Parkinson's

Motor neurone disease

Other

Not disclosed

Progressive supranuclear palsy (PSP)

Syringomyelia / Arnold Chiari

Spina bifida hydrocephalus

Multiple sclerosis (MS)

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• Myoma• Charcot-Marie-Toothdisease• Acousticneuroma• Complexpartialseizures• Cerebellaratrophy• Peripheralneuropathy• Myalgicencephalopathy• Chronicinflammatorydemyelinatingpolyneuropathy• Cerebralpalsy• Guillain-Barresyndrome• Fibromyalgia

Location of survey respondents

ThesurveywasdistributedandpromotedacrossNorthernIreland.Figure2showsthespreadofresponsesacrosstheregion,byHealthandSocialCareTrustarea.

Figure 2: Distribution of survey responses, by Health and Social Care Trust (HSCT) area

WHSCT11%

NHSCT18%

BHSCT33%

SHSCT18%

SEHSCT16%

HSCT not identified

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The story

Incompletingthesurvey,peoplewereaskedtodescribeaneventorexperiencethatwouldhelpsomeoneunderstandthedaytodaychallengestheyfaceasapersonwithaneurologicalconditionorasacarerorfamilymember.

ThecollectionofstoriesgatheredthroughthesurveywereenteredintoWordlesoftwaretogeneratea‘wordcloud’.Thiscloudshowswordsthatwerefrequentlyusedwithinthestories,whilethesizeofthewordindicateshowfrequentlyitwasused.

Asillustratedbythewordcloud,themostfrequentlyusedwordswithinthe142storiesfocusedonthefollowingthemes:

• Time(day,time,years,life,months,now,long,still).• Everydaylife(home,work,family).• Thecondition(medication,diagnosed,care,pain).• Action(go,get,take,help).• Humanaspect(people,children,daughter,wife).

Interpreting the story

Afterdescribingtheirexperience,peoplewereaskedtoself-interpretitsmeaningusingaseriesofquestions.ThisinformationwaspresentedtotheNetworkatananalysisworkshopinMay2011fordiscussionandinterpretationofthepatterns.

Interpretationofthepatternsfocusedonwhattheinformationshowsforthesamplepopulation,raisingquestionsbutavoidinguniversalconclusions.

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Recommendations Fourpriorityareasemergedfromtheanalysisandinterpretationofpatterns:

1. Alackofclearandaccurateinformation,anddifficultiesindiagnosis.2. Howpeopleexperiencecontrolandchoice–thisimpactsinparticular

ontheirabilitytoself-manageandonthefocusofapatient-centredservice.

3. Impactonday-to-daylivingandindependence(‘whatmakesyou,you?’)–ifindependenceandtheaspectsofdailylivingsuchasfinance,employment,sociallife,abilitytogetoutandaboutdeteriorate,itincreasesinequalities.

4. Emotionalandpsychologicalimpactonindividualswithaneurologicalconditionandtheirfamilies–inparticular,thesupportthatpeoplecanaccessforprocessingtheemotions(anxiety,stress,fear,frustration,isolation,lossandvulnerability)associatedwithlivingwithaneurologicalcondition.

Inconsiderationofthesepriorityareas,thefollowingactionsarerecommended:

Undertake an audit of care plans Completinganauditofcareplanstoidentifytheextenttowhichindividualshavechoiceandcontrolovertheircareandtreatment.

Define care pathways Definingcarepathwayswouldplayanimportantpartinensuringintegrationofservicesandwouldprovideindividualswithanunderstandingofthecare,treatmentandsupportavailable.

Support people to become expert patients Expertpatientsaredefinedaspeoplelivingwithalong-termhealthconditionwhoareabletotakemorecontrolovertheirhealthbyunderstandingandmanagingtheircondition.Werecommendsupportingpeoplewithneurologicalconditionstobecomeexpertpatients,sothattheycreatepartnershipswithhealthprofessionals,chooseself-managementanddevelopcontroloftheircareandtreatment,particularlywhentheeffectsoftheconditionimpactoncommunication.

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Review how enhanced support is integrated with professional care and treatment Peersupportgroupsandcharitiesprovideawiderangeofassistanceforpeoplewithaneurologicalconditionandtheirfamiliesandcarers.Werecommendintegratingthesupportfromtheseorganisationswithinadefinedcarepathway,providingopportunitiesfor‘wraparound’supportforindividualsandtheirfamilies.

Service teamsInordertomanagecarepathwaysandfullyimplementtherecommendationswithinHealthandSocialCare,weproposethatneurologicalconditionsareprioritisedwithinone(ormore)oftheHealthandSocialCareBoard’sserviceteams.

Linking with the Social Security AgencyLinkingwiththeSocialSecurityAgencytoraiseawarenessofbenefitentitlementandincreasetheunderstandingofwhatfinancialsupportisavailabletothosewithaneurologicalconditionandtheircarers.

Linking with public transport providers Linkingwithpublictransportproviderstoexplorethepossibilityofenablingeaseofaccesstopublictransport(includingtheprovisionoffreetravelforthosewithlong-termneurologicalconditions),sothatindividualscanmaintaintheirindependenceandaccessthesupportservicesavailabletothem.

Linking with the Department for Employment and Learning LinkingwiththeDepartmentforEmploymentandLearningtogeneratediscussionaboutpossibleoptions(suchastraining/re-training)forthoselivingwithaneurologicalconditionandtheircarerstoremaininemploymentforaslongaspossible.Thiswouldsupportindependenceandimpactonthefinancialdifficultiesfacedbymanyfamilies.

Providing counselling and emotional supportProvidingemotionalsupporttocarersandfamilymembers,inadditiontotheprovisionofmentalhealthandwellbeingsupportforindividualswithaneurologicalcondition.Improvingthementalhealthofcarersandfamilymemberswillenablethemtosupporttheirlovedonesthroughtheneurologicalcondition.

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Ongoing engagement with individuals and carers Engagementworksbestwhenit’sinthecontextofatrustedrelationship.WhileSenseMakerisanefficientwayofcapturinginformation(asatool),werecommendusingtrustedindividualstocollecttheexperiencesofserviceusersandcarers.

Engagement with Health and Social Care professionalsWerecommendthatconsiderationisgivento:

• engagingwithHealthandSocialCareprofessionals,suchasconsultantsandalliedhealthprofessionals;

• involvingthemintheprocessofengagement;• feedingbackontheseresults.

Adding to the knowledge base in relation to people with neurological conditionsContinueduseofanumberofengagementtools,includingSenseMaker,wouldbuildadynamicknowledgebaseabouttheissuesfacingindividualslivingwithneurologicalconditions,andtheircarers,whichwouldinformdecision-makingandplanning.

SenseMakerasatoolcandeliverrichinformationthathighlightsissuessuchaspeople’sexperiencesandwhatpeopleneed.Werecommendthattheexperiencesurveycontinuestobeusedasatoolforengagingwithpeoplelivingwithaneurologicalcondition,andtheircarers.

Inaddition,toensurethatwehearabouttheexperiencesofchildrenlivingwithneurologicalconditionsandchildrenwhocareforotherswithsuchconditions,werecommendthatthechildren’ssurveywehavedevelopedispiloted,evaluatedandrolled-outonawiderbasis.Thiswillrequirecollaborationwithspeechandlanguagespecialiststolinktheexperiencesurveywithcommunicationaidsusedbythosewithcomplexcommunicationneeds.Thiswillensurethattheexperiencesacrossthepopulationcanbeunderstoodandarticulated.

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Next stepsThiswasthefirstexercisecarriedoutwiththeaimofunderstandingthequalityoflifeneedsandprioritiesacrosssucharangeofconditions.Whilethissurveyhasnotbeenabletoreacheveryone,itssuccessindeterminingsharedprioritiesacrossarangeofconditionslaysafoundationforongoingengagement,whichcanthenbedevelopedtoincludepeoplewithmorecomplexcommunicationneeds,childrenlivingwithneurologicalconditionsandchildrenwhocareforotherswithsuchconditions.

Theissueshighlightedintheexperiencesurveyaffectpeople’shealthandwellbeinginthebroadestsense.Indeed,theserevealasignificantholisticimpactonqualityoflife.Theseissues,therefore,cannotbeviewedasfallingonlywithinthesphereofthe‘healthservice’.

Thesesharedprioritiesestablishedtheneedtobringtogetherallrelevantstakeholdersinordertobeginthedevelopmentofanactionplanandensuretheserecommendationsaretakenintoaccountinservicedesignanddeliveryacrossawiderangeoforganisations.Thiswillbeachievedthroughaworkshop,hostedbytheNeurologicalConditionsNetworkandattendedbykeystakeholderssuchas:

• peoplelivingwithneurologicalconditionsandtheircarers;• consultants;• alliedhealthprofessionals;• specialistnurses;• keycommunityandvoluntarysectorpartners;• theDepartmentofHealth,SocialServicesandPublicSafety;• otherrelevantdepartments.

Thiscollaborativeworkingshouldenablethedevelopmentofanactionplanthatgoessomewayinaddressingtheissuesraisedthroughtheengagementprocess.

Ifyouwishtoreadthereportinfull,pleasegoto:www.publichealth.hscni.net/ncnsurvey

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Alternatively,youcancontact:neurological.conditions@hscni.net

Shouldyourequirethissummaryreportinanalternativeformat,wearehappytoconsideranyrequests.Pleasecontact:neurological.conditions@hscni.net

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Membership of the Neurological Conditions Network• MichelleTennyson,PublicHealthAgency(Chair)• MartinQuinn,PublicHealthAgency• JulieMawhinney,PublicHealthAgency• VeronicaGillen,HealthandSocialCareBoard• TeresaMagirr,HealthandSocialCareBoard• StephenLong,BelfastHealthandSocialCareTrust• SandraMcCarry,BelfastHealthandSocialCareTrust• AidenDawson,BelfastHealthandSocialCareTrust• KieranDrayne,SouthEasternHealthandSocialCareTrust• CarolynAgnew,SouthernHealthandSocialCareTrust• HazelBaird,NorthernHealthandSocialCareTrust• PatriciaGordon,MultipleScelorosisSociety,representingLong-Term

ConditionsAllianceNorthernIreland• MorinaClarke,EpilepsyAction,representingNorthernIreland

NeurologicalCharitiesAlliance• NicolaMoore,Parkinson’sUK,representingNorthernIreland

NeurologicalCharitiesAlliance• ChristineCollins,Huntington’sDiseaseAssociationNorthernIreland,

representingNorthernIrelandNeurologicalCharitiesAlliance• RichardDixon,PatientClientCouncil• TomRobinson,DepartmentofHealth,SocialServicesandPublic

Safety• HelenFerguson,CarersNorthernIreland• JohnMcCormick,CarersNorthernIreland

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GlossaryAudit:Aprocessofmeasuringpracticeagainststandardsandthenimprovingpractice.

Care pathways:Asequenceofcareserviceslinkedtogetherforpeoplewhomovefromoneprofessionaltoanother,oroneplacetoanother,inthecourseoftheircare.

Engagement:Theprocessofmeetingandinvitingdiscussionwithpeopleandcommunitieswhousehealthandsocialcareservices.

Health inequalities:Thevariationinhealthstandardsacrossdifferentsectionsofthepopulationanddifferentgeographicalareas.

Holistic:Allaspectsofpeople’sneeds–psychological,physicalandsocial.

Neurological condition:Illnessthatresultsfromdamagetothebrain,spinalcolumnornerves.Someneurologicalconditionscandevelopatanystageinlife,whileotherscanbepresentfrombirth.

Personal and Public Involvement (PPI):Theprocessofinvolvingthepublicandthosewhousehealthandsocialcareservicesintheplanninganddeliveryoffutureservices.PPIprovidespeopleandcommunitieswithanopportunitytoinfluencethedirectionofhealthandsocialcareservicesrelevanttothem.

Qualitative:Investigatingthe‘why’and‘how’ofdecisionmaking,notjust‘what’,‘where’and‘when’.Smaller,focusedsamplesareneededmoreoftenthanlargesamples.

Quantitative: Systematicinvestigationbystatistical,mathematicalorothermeasurabletechniques.

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Quality of life:Thegeneralwellbeingofindividualsandsocieties.Standardindicatorsofqualityoflifeincludenotonlywealthandemployment,butalsothebuiltenvironment,physicalandmentalhealth,education,recreationandleisuretime,andsocialbelonging.

Self-management:Theprocessbywhichpatientswithachroniccondition,disabilityordiseasecaneffectivelytakecareofthemselves.

Service teams:Twelveteamsthatensureourregionalcommissioningintentionsacrosskeythemesareclear,appropriateandaffordable.Eachteamisformallyappointedandreportstoaprogrammeboard.

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Public Health Agency, Ormeau Avenue Unit, 18 Ormeau Avenue, Belfast, BT2 8HS. Tel: 028 9031 1611. Textphone/Text Relay: 18001 028 9031 1611. www.publichealth.hscni.net

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