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FocusGroupMeeting4/2/2012

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.

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Individualsmaybehappytotelltheirstoriesbutshouldbeallowedtodosowithorwithoutpictures/videos. Arepresentativeforeachdisorderonthecommunityboardwouldbeinvolvedwithcontentandmaintenanceofthesepages.

Donationpage

VirginMoneyGiving(JustGivingtakesa%ofthedonation) Brandedmerchandisetosellonline,e.g.plasticwalletsforrailcardsetc

Membership

Membershiptobesetat20:00/yrtogainaccesstoforums,chatroomsanddownloads.Alsoquarterlynewsletter. Membershipwouldgiveyouapasswordtoaccessabove.

Membershipformsshouldhaveadonationbox Membershipdata

AboutUsPage

ValueStatement Vision Codeofconduct

PRandMedia

Approximately15reallifestoriesthatcanbeusedinthemediaSupportPage

Contactinformationforsupportgroups. Howtosetupyourownlocalsupportgroup? Linkstootherorganisations. Positivestoriesaboutgoodoutcomes Newlydiagnosedandlongtermissues Tipsandusefuladvice SelfHelp Specificsupportaroundthe2yrmarkerwherespontaneousrecoveryhastakenplaceand

issuesariseaboutcomingtotermswithnotregainingnormalfunction. Feltthiscouldbealowpointalongthejourneyforwhichthereshouldbespecificacknowledgementandsupport.

Inwhatformshouldsupportcome? Mutual. DISLIKEDAPPROACHBEPOSITIVE,ITSAGOODATTITUDETHATHEALSYOUasatlowtimesmaynotfeelatallpositiveandthenfeelthatyouhavefailedtoadopttherightattitude.

Contactnumbers/emailaddressesforsomeonetotalktobutpreferthispersontobepsychotherapistorsimilarorpossiblyotherpersonwhohasfirsthandexperienceoffacialpalsy.

Wouldlikearepresentativeforeachdisorder. Concernedthatthereshoulddefinitelybearepresentativefor

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1. Childrenandadolescents.2. PregnantwomenornewmothersdiagnosedwithBellsPalsyorsimilar. Aftercareadvicee.g.eyecare,dentalcare,speech,eatinganddrinkingrecipiesforpeople

withswallowingproblems. Specificadvicefortheelderly,forexample,howtoadministereyedrops InformationleafletsshouldbemadeavailableatGPsurgeries,outpatientdepartments,

dentists,opticians,asneedtoraiseawarenessoffacialpalsyanditsconsequencesamongstGPs,Dentists,Opticiansespeciallyinrelationtoaftercare.

Zoneforsharinginformationabouttreatment,encouragementfromothersregardingmaintainingexerciseprogrammesetc

FundRaisingPage

Howtofundraisehelp/advice/ideas Merchandisetohelpwithfundraisinge.g.banners,balloons,collectingtinsetcthatcanbe

boughtfromthewebsite Photosoffundraisingeventsetc