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  • Focus Group Meeting 4.2.12

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    beronned
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    Focus Group Meeting 4 / 2 / 2012 Advocacy Lobbying - wanted a voice Issues: Funding for surgery, free prescriptions for various mouth and eye care products. Youth Zone with pages for the following Adolescents Younger children Parents Access to a "buddy" Sign posting to how to get help, (e.g. Psychological care in adolescence) information and advice to schools and colleges about issues and how to handle these within a school environment.

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    Focus Group Meeting 4 / 2 / 2012 Advocacy Lobbying - wanted a voice Issues: Funding for surgery, free prescriptions for various mouth and eye care products. Youth Zone with pages for the following Adolescents Younger children Parents Access to a "buddy" Sign posting to how to get help, (e.g. Psychological care in adolescence) information and advice to schools and colleges about issues and how to handle these within a school environment.

    Droits d'auteur :

    Attribution Non-Commercial (BY-NC)
    Téléchargez comme PDF, TXT ou lisez en ligne sur Scribd
    Signaler comme contenu inapproprié
    19 vues3 pages

    Focus Group Meeting 4.2.12

    Transféré par

    beronned
    Focus Group Meeting 4 / 2 / 2012 Advocacy Lobbying - wanted a voice Issues: Funding for surgery, free prescriptions for various mouth and eye care products. Youth Zone with pages for the following Adolescents Younger children Parents Access to a "buddy" Sign posting to how to get help, (e.g. Psychological care in adolescence) information and advice to schools and colleges about issues and how to handle these within a school environment.

    Droits d'auteur :

    Attribution Non-Commercial (BY-NC)
    Téléchargez comme PDF, TXT ou lisez en ligne sur Scribd
    Signaler comme contenu inapproprié
    sur 3

    FocusGroupMeeting 4/2/2012

    Advocacy Lobbyingwantedavoice Issues: Fundingforsurgery,freeprescriptionsforvariousmouthandeyecareproducts. RaisingAwareness(Awarenessdayorweek) ApproachMPs(invitetolaunch) NormalisingFacialDifference

    YouthZonewithpagesforthefollowing
    Adolescents Youngerchildren Parents Accesstoabuddy Signpostingtohowtogethelp,(e.g.psychologicalcareinadolescence). Informationandadvicetoschoolsandcollegesaboutissuesandhowtohandlethesewithin aschoolenvironment Issuesraisedwerebullying,isolation,onlyfeelingnormalinasafeenvironmentlikehospital, GOS,therapysession.

    1830sZonewithpagesforthefollowing
    Forum/Chatroomspecificallyforthisagegroup SocialSkills/InteractionSkills Interviewtipsandadvice Signpostingtocourses,training,workshopsetcandotherorganisations

    Signpostingforthefollowing:
    SpecialistcentresacrosstheUK Wheretogetspecialisthelpforspecificissues

    Pageforpartners,friendsandfamily.THEGROUPDIDNOTLIKETHETERMCARERS Pageforemployers Pageforeachdisorder personalstoriesoneachpage shouldbeamixofmaleandfemalesothatiftherewerespecificissuesforgender thesewererepresentedequally.

    Individualsmaybehappytotelltheirstoriesbutshouldbeallowedtodosowithor withoutpictures/videos.Arepresentativeforeachdisorderonthecommunity boardwouldbeinvolvedwithcontentandmaintenanceofthesepages. Donationpage VirginMoneyGiving(JustGivingtakesa%ofthedonation) Brandedmerchandisetosellonline,e.g.plasticwalletsforrailcardsetc Membership


    Membershiptobesetat20:00/yrtogainaccesstoforums,chatroomsanddownloads. Alsoquarterlynewsletter.Membershipwouldgiveyouapasswordtoaccessabove. Membershipformsshouldhaveadonationbox Membershipdata AboutUsPage ValueStatement Vision Codeofconduct PRandMedia Approximately15reallifestoriesthatcanbeusedinthemedia SupportPage Contactinformationforsupportgroups. Howtosetupyourownlocalsupportgroup? Linkstootherorganisations. Positivestoriesaboutgoodoutcomes Newlydiagnosedandlongtermissues Tipsandusefuladvice SelfHelp Specificsupportaroundthe2yrmarkerwherespontaneousrecoveryhastakenplaceand issuesariseaboutcomingtotermswithnotregainingnormalfunction.Feltthiscouldbea lowpointalongthejourneyforwhichthereshouldbespecificacknowledgementand support. Inwhatformshouldsupportcome?Mutual.DISLIKEDAPPROACHBEPOSITIVE,ITSA GOODATTITUDETHATHEALSYOUasatlowtimesmaynotfeelatallpositiveandthenfeel thatyouhavefailedtoadopttherightattitude. Contactnumbers/emailaddressesforsomeonetotalktobutpreferthispersontobe psychotherapistorsimilarorpossiblyotherpersonwhohasfirsthandexperienceoffacial palsy. Wouldlikearepresentativeforeachdisorder.Concernedthatthereshoulddefinitelybea representativefor

    1. Childrenandadolescents. 2. PregnantwomenornewmothersdiagnosedwithBellsPalsyorsimilar. Aftercareadvicee.g.eyecare,dentalcare,speech,eatinganddrinkingrecipiesforpeople withswallowingproblems. InformationleafletsshouldbemadeavailableatGPsurgeries,outpatientdepartments, dentists,opticians,asneedtoraiseawarenessoffacialpalsyanditsconsequencesamongst GPs,Dentists,Opticiansespeciallyinrelationtoaftercare. Specificadvicefortheelderly,forexample,howtoadministereyedrops

    Zoneforsharinginformationabouttreatment,encouragementfromothers regardingmaintainingexerciseprogrammesetc

    FundRaisingPage Howtofundraisehelp/advice/ideas Merchandisetohelpwithfundraisinge.g.banners,balloons,collectingtinsetcthatcanbe boughtfromthewebsite Photosoffundraisingeventsetc

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