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A directory of resources to help people affected by a brain tumour Edition 1: April 2016 the little book white South East Scotland
A directory of resources to help people affected by a brain tumour
Edition 1: April 2016
the little
bookwhite
South East Scotland
ContentsNetworking 2
Psychological support 6
Support groups 10
Support for carers 14
Support for children 20
Support lines 24
Financial support 26
Complementary therapies 28
Holidays and short breaks 32
Welfare and legal advice 34
Transport services 40
Respite and end of life care 42
Bereavement support 44
What can brainstrust do to help? 50
Introduction 1
IntroductionWeknowhowlostyoucanfeelwhenyouoryourlovedoneisdiagnosedwithabraintumour.Butwealsoknowhowmanyinvaluablesupportservicesthereareavailablelocallythatcanhelpyouateverystepofyourbraintumourjourney.
Hereatbrainstrustwe’vebeenworkingtirelesslywiththehelpofourfantasticvolunteerssearchinghighandlowforuseful,localservicesforpeopleaffectedbyabraintumour.Thisdirectory,focusingonthecharitysector,includesinformationonsomeofthebestoftheseservicesinSouthEastScotland.Wehopeyoufindittobeanauthoritativeguideandthatithelpsyouaccesstheseresourcesinyourareaquicklyandwhenyoumostneedthem.
Wemaynothaveincludedeverythingherejustyet,butwehavebeenabletobringtogethermanysourcesofhelpthatwe’recomfortablewithandthatweregularlyrecommendtoourcommunity.Youcanfindthemostuptodateversionofthisinformation,andmoreonlineatwww.braintumourhub.org.uk
Thingschange.Newserviceswillpopup,andsomemaystopoperatingorchangetheirfocus,butwewillbereviewingtheinformationwithinthisdirectoryeveryyear.Ifthereareanyadditionalservicesthatyouwouldliketoseeinhere,pleasegetintouchwithuson01983 292 [email protected]
ThisguidewouldnothavebeenpossiblewithoutthesupportofTheRankFoundation,TheVeraWolstencroftChildrenandAnimalCharitableTrustandtheNationalLotterythroughtheBigLotteryFund.
Wehopeyoufindituseful.
Carol and all the team at brainstrust
2 Networking Networking 3
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
brainstrust Meet Ups
brainstrust 07969 702201 Venuesvary–pleasegetintouchfordetails.
www.meetup.com/brainstrust/
Anopportunityforpatients,carersandanyoneaffectedbyabraintumourtogettogethersociallywithothersandhavefun.Youcanshareexperiencesandseekinformationfrompeoplewhoknowwhatyou’regoingthrough,butonlyifyouwantto.Previousgettogethershavetakenplaceoverpizza,tapasandafternoontea.
Edinburgh Brain Tumour Networking Group
Maggie’sEdinburgh 0131 537 3131 Maggie’sEdinburgh,WesternGeneralHospital,TheStables,CreweRoad,EdinburghEH4 2XU
www.maggiescentres.org/our-centres/maggies-edinburgh/
Thisgroupisformenandwomanlivingwithabraintumourandtheircarers.Thegroupprovidesanopportunitytotalktoothersinasimilarsituation.Meetupsarerunonadrop-inbasisonthefirstTuesdayofthemonthbetween7pmand9pm.
The essence of networking is to share experiential sympathy and understanding which can be beyond the scope of health care professionals. Networkingalsoallowsyoutomeetothersfromthewidercommunity–notjustthosewhotypicallyattendsupportgroups.Thesepeoplecanincluderesearchers,fundraisers,charityworkersandotherinterestedparties.
Itisimportanttobeawarethatwhilstnetworkingeventscanbeasourceofexcellentinformation,theyaremuchmore‘free-flowing’thanfacilitatedsupportgroups.Thediscussionisnotcontrolled,opinionscanbesubjective,andtheymaynotconstitutemedicaladvice.
Networking
4 Networking Networking 5
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
Dumfries Brain Injury Activity Centre
HeadwayDumfries&Galloway
01387 261166 HeadwayHouse(Dumfries&Galloway)AssociationLtd,AftonDrive,DumfriesDG2 9ES
www.headwaydg.org/services/adult_services/day_service
Ateamofprojectworkershavedevelopedadiverseday-serviceopentopeopleaffectedbyabraininjury.Themorningsessionsfocusonphysicalandmentalrehabilitationthroughmemorygroups,cognitiveexercises,anddailyliving&literacyskills.Intheafternoon,sessionsfocusonthetherapeuticnatureofsocialising.Activitiesincludegardening,rambling,fishing,filmclubs,dramaclubs,cameraclubs,artclasses,andquizzes.TheserviceisopenMondaytoThursday.
East Lothian Brain Injury Support Group
HeadwayEastLothian
07895 193974 Headway–thebraininjuryassociation,TheBleachingfieldCentre,CountessCrescent,DunbarEH42 1DX
www.headway-eastlothian.org.uk/in-your-area/
ThisactivecharityholdsthreeregularmeetupgroupsinMusselburgh,HaddingtonandDunbar.Thegroupactivitiesrangefromaquietchatoveracoffeeandagameofdominostoorganisedworkshopswhichcanhelpyoutobuildnewskillsinasocialenvironment.TheyalsohavemonthlyoutingstoplacessuchasTheFalkirkWheelandTheAlnwickGardenswhichusuallytakeplaceonthelastFridayofeachmonth.
Fife Brain Injury Networking Activities
HeadwayFife 01592 370034 FifeHeadway,23WhyteCauseway,KirkcaldyKY1 1XF
www.fifeheadway.co.uk
Thischarityoffersavarietyoffunandengagingnetworkingactivitiesforadultswhohavebeenaffectedbyabraininjury.Theactivitiesincludetaichi,tenpinbowling,craftsandmonthlymeetingsledbyguestspeakers.ThemeetingsusuallytakeplaceonlastTuesdayofthemonthbetween7pmand9pminLintonLaneCentre.Transportmaybeavailabledependingonlocation.
6 Psychologicalsupport Psychologicalsupport 7
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
brainstrust Counselling
brainstrust 01983 292405 Various [email protected]
www.brainstrust.org.uk
Aprogrammeofcounsellinguniquelydesignedforpatientsandcarersaffectedbyabraintumourdiagnosis.Sessionscaneitherbefacetofaceoroverthetelephonedependingonthecircumstances.
Cancer Support Specialist
Drop-in
Maggie’sFife 01592 647997 Maggie’sFife,VictoriaHospital,HayfieldRoad,Kirkcaldy,FifeKY2 5AH
www.maggiescentres.org/our-centres/maggies-fife/
Hereyouhaveaccesstoaprofessional,qualifiedCancerSupportSpecialistatanytime.Theycanofferalisteningearforyourconcerns,provideemotionalsupportandguideyoutotheinformationyouneed.
Edinburgh Family Support
MarieCurie 0131 470 2201 MarieCurieHospiceEdinburgh,FrogsonRoadWest,EdinburghEH10 7DR
www.mariecurie.org.uk/help/hospice-care/hospices/edinburgh
Ateamoffriendlysocialworkersareheretoofferpractical,emotionalandspiritualsupporttofamilymembersofpeoplecurrentlyreceivingcarefromtheMarieCuriehospice.
Alongside the care you receive from doctors, nurses and other health professionals you may wish to seek psychological and emotional support.
Itisquiteusualtoexperiencestress,worryandconcernsasaresultofabraintumourdiagnosisortreatment.Itmayleadyoutoexperienceoneormoreofthefollowing,anxiety,uncertaintyaboutthefuture,anger,adjustmentdifficulties,distress,familycommunicationproblems,changesinbodyimage,depression,decision-makingdifficulties,challengesbalancingillnessandtreatmentalongsidethedemandsoflife.
Somepeoplecanfindithelpfultodiscusstheirfeelings,needsandconcernsinaconfidentialspacewithateamexperiencedinhelpingpatientsandthoseclosetothem.Herewehavesomeoptionsforyou.
Psychologicalsupport
8 Psychologicalsupport Psychologicalsupport 9
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
Edinburgh Professional Cancer Support
Maggie’sEdinburgh 0131 537 3131 Maggie’sEdinburgh,WesternGeneralHospital,TheStables,CreweRoad,EdinburghEH4 2XU
www.maggiescentres.org/our-centres/maggies-edinburgh/
Weknowthatsometimesyouneedsomeextrahelpcopingwithyourdiagnosis.Atthiscentretherearethreecancersupportspecialists,apsychotherapistandaclinicalpsychologistallavailabletogiveyouthathelpinghandyouneed.Thecentrealsorunsanumberofworkshopstohelpyoumanagestress,achieverelaxationandattainpost-treatmentsupport.
10 Supportgroups Supportgroups 11
Support groups are a place for people to give and receive both emotional and practical support as well as to exchange information.Peoplewithabraintumour,aswellastheirfriendsandfamilies,findsupportgroupstobeavaluableresourcewherepeoplecansharemedicalinformation,getconfirmationthattheirfeelingsare“normal,”educateothers,orjustletoffsteam.Whensomeoneissearchingforasupportgroup,thesinglemostimportantthingtoremembermaybe:ifthegroupdoesn’tfeelrighttoyouordoesn’tmatchyourneeds,tryadifferentgroup.Therearemanyoptionsavailable.
Supportgroups
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
Dumfries Cancer Support Group
MacMillanCancerSupport
01387 241978 TheMacMillanCentre,DumfriesandGallowayRoyalInfirmary,BankendRoad,DumfriesDG1 4AP
www.nhsdg.scot.nhs
Thissupportiveandinvitinggroupisforpeoplewhohaveexperiencedcancereitherasapatient,carer,familymemberorfriend.ThegrouprunsonthefirstTuesdayofthemonthbetween7pmand8.30pm.
Fife Brain Tumour Support Group
TheBrainTumourCharity
07827 595855 Maggie’sFife,VictoriaHospital,HayfieldRoad,Kirkcaldy,FifeKY2 5AH
www.thebraintumourcharity.org/get-support/support-your-local-area/fife-support-group/
AmonthlysupportgroupforpeopleaffectedbyabraintumourwithintheFiferegion.Lightrefreshmentsareprovidedandanyreasonabletravelexpenseswillbereimbursed.ThegroupmeetonthelastThursdayofalternatemonthsbetween6pmand8pm.
Edinburgh Brain Tumour Support Group
BrainTumourAction
0131 334 3609 Maggie’s,WesternGeneralHospital,CreweRoadSouth,EdinburghEH4 2XU
www.braintumouraction.org.uk/index.php/support/
Thiscaringandunderstandinggroupisforanyoneaffectedbyabraintumourdiagnosisincludingpatients,carers,relativesandfriends.TheymeetonthefirstTuesdayofeverymonthat7pm.
12 Supportgroups Supportgroups 13
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
Kelso Brain Injury Support Group
HeadwayBordersKelso
07826 519567 AbbeyRowCommunityCentre,TheKnowes,Kelso,RoxburghshireTD5 7BJ
www.headway.org.uk/supporting-you/in-your-area/groups-and-branches/scotland/headway-borders/
Thisrelativelynewyetwell-respectedgroupoffersupport,skilldevelopmentandcompanionshiptothoseintheBordersareawithanacquiredbraininjury.Familymembersandcarersarealsowelcometocomealong.Somegroupmembersprefertositandchatoveracuppawhilstothersoccupythemselveswithvariousactivitiessuchasartsandcrafts,quizzes,andbaking.Thegroupmeetsonthe2ndThursdayofeachmonthbetween2pmand4pm
14 Supportforcarers Supportforcarers 15
Being a carer is not a job you apply for. We know. It’s also one of the hardest jobs you might have to do.Youcouldbefacinglookingaftersomeonewithbothacancerdiagnosisandtheprospectofasignificantlydebilitatingneurologicaldisease.Becauseofthisit’simportantthatyougetthehelpyouneedtoo.Thereisalotoutthereforyou.
Supportforcarers
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
Princess Royal Trust Borders Carer Centre
Carerstrust 01896 752431 ThePrincessRoyalTrustBordersCarerCentre,Brewerybrig,LowBuckholmside,GalashielsTD1 1RT
www.borderscarerscentre.co.uk
ThisBorderssupportcentreisavailabletohelpyouasacarertocaresafelyandmaintainyourownphysicalandmentalwellbeing.Itcanalsoprovideyouwithinformation,support,respectandrecognitiononaspectssuchasrespiteandpersonalcare.Thecentreisopenbetween10amand2pmfromMondaytoFriday.
VOCAL Carers Centre
CarersNet 0131 622 6666 VOCALCarersCentre,8–13JohnstonTerrace,EdinburghEH1 2PW
www.vocal.org.uk
Thisorganisationfocusesonprovidingsupporttocarersinallfamilyandrelationshipsettings.Theydeliverpracticaladviceoncommunitycare,assessments,financialinformationandreceivingsupportasacarer.Theiremotionalsupportcoversaspectsofcaringsuchaschangingrelationshipsanddealingwithguilt.ThecentreisopenMondaytoFridaybetween9amand5pm.
16 Supportforcarers Supportforcarers 17
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
Family and Friends Support Group
Maggie’sEdinburgh
0131 537 3131 Maggie’sEdinburgh,WesternGeneralHospital,TheStables,CreweRoad,EdinburghEH4 2XU
www.maggiescentres.org/our-centres/maggies-edinburgh/
Weknowcaringforsomeonewithcancercanbeachallengingtimebothphysicallyandmentally.Hereyouhaveaccesstoagroupspaceforyouandothercarerstomeetup,relaxandenjoysomewell-earned‘me’time.ThissupportgroupisalsoavailableatMaggie’sFife.
Edinburgh Support for Minority Ethnic Carers
MECOPPCarersCentre
0131 467 2994 MECOPPCarersCentre,172LeithWalk,EdinburghEH6 5EA
www.mecopp.org.uk
ThisorganisationprovidesnumeroussupportservicesforminorityethniccarersinEdinburgh.Thisincludesmulti-lingualadviceandinformation,advocacysupport,educationandtrainingopportunities,healthylivingprogrammes,anddomesticcaresupport.Theyalsorunanumberofrecreational,socialandtherapeuticactivities.
Carer Breaks Information and Advice
WeeBreakMidlothian
0131 271 3707 VOCALcarer’scentre,30/1HardengreenEstate,DalhousieRoad,DalkeithEH22 3NX
www.weebreak.org
Whetheritisafewhoursorafewweekslong,abreakfromcaringcanhelpyourelax,recoupandregainyourenergy.IfyouarelookingaftersomeoneintheMidlothianareathischaritycanhelpyoutakeawell-earnedbreakfromyourcaringrole.Theycanprovideyouwithinformationandadviceonplanningthebreak,helpyoufindfundingandshareusefultipsfromotherscarers.
18 Supportforcarers Supportforcarers 19
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
Wester Hailes Health Agency Carer’s Group
WesternhavenInformationandSupportCentre
0131 453 9400 MacMillanCancerInformationandSupportCentre,Westernhaven,30HarvesterWay,EdinburghEH1 43JF
westerhaven.wix.com/support
Weknowyourtasksasacarercansometimesprovetobestressfulandisolating.Thiscarer’sgroupcanofferpracticalandemotionaladviceandmutualsupportfromothercarers.Theirwarmandwelcomingatmospherecantakeyourmindoffyourcaringresponsibilitiesallowingyoutoenjoythefunandrelaxingactivitiesonoffer.ThegrouprunseveryFridaybetween10.15amand12.15pm.
20 Supportforchildren Supportforchildren 21
500 children a year are diagnosed with a brain tumour, and there are innumerable families living with the disease.Two-thirdsofchildrendiagnosedareleftwithadisability.Familiescanfindcommunicationdifficult,andawarenessofbraintumoursinchildrenislow;thisisdespitethefactthatbraintumoursnowkillmorechildrenthananyotherillnessintheUK.Becauseoftheseunique,andfrustratingchallenges,thereishelpavailableforyouandyourchild.
Supportforchildren
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
The Royal Hospital Teenage Cancer Trust Unit
TeenageCancerTrust
0131 536 0000 TheRoyalHospitalforSickChildren,9SciennesRoad,EdinburghEH9 1LF
www.teenagecancertrust.org/get-help/how-we-can-help/our-units/royal-hospital-sick-children
TheTeenageCancerTrustUnitissituatedintheRoyalHospitalforSickchildren.Theunit,aimedat13to16yearolds,hastwobedsandtheroomsareequippedwithsoftfurnishings,bespokefurniture,DVDandgamingfacilitieswithwifiandlaptopsprovided.
Child Cancer Family Support Service
ChildrenwithCancerandLeukaemia,AdviceandSupportforParents(CCLASP)
0131 467 7420 Unit24and7,NorthLeithSandsEH6 4ER
www.cclasp.net
Thischildren’scharityisrunbyparentswhosechildren(agedfrombirthto19years)havebeenaffectedbyvarioustypesofcancer.Theyofferawiderangeofservicesfromtheprovisionoftransportforclinicappointmentstosummerpicnicsandfamilyoutings.
The Sick Kids Drop-in Centre
TheSickKidsFriendsFoundation
0131 536 0887 20MillerfieldPlace,EdinburghEH9 1LW
www.edinburghsickkids.org/what-we-do/drop-in-centre/
Thisdrop-incentreprovidesaninformal,homelyatmosphereawayfrombusywardsforchildrenaffectedbylong-term,life-impactingconditionsandtheirfamilies.Therearethreemainrooms;acomfortableloungetorelaxandhaveacuppa,aquietroomusedforcomplementarytherapiesandemotionalcounsellingandabright,stimulatingactivityroomforchildren.
22 Supportforchildren Supportforchildren 23
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
Art Therapy for Children
TheTeapotTrust 01875 812012 TheTeapotTrust,CockenzieBusinessCentre,Cockenzie,EastLothianEH32 0XL
www.teapot-trust.org/about-us/our-services/
Thisinnovativeserviceallowsanychildattendingaclinictoengagewithanarttherapistbyjoiningthearttableandparticipatinginpainting,drawing,collages,andclaymodelling.Thegrouphelpstoreduceanxietybeforemedicalproceduresaswellasprovidingasafespaceforchildrentoshowdifficulttoexpressfeelingsabouttheirillness.
24 Supportlines Supportlines 25
Support lines are an invaluable service available to brain tumour patients and their carers.Theyareoftenavailablewhenaclinicianisn’t,andtheadvicecanbeobjective.Someofthehelplinesaredrivenbypatientandcarerexperience,meaningthepersonontheendofthephonemayknowexactlywhatyouaregoingthrough.Thephonesupportyoureceivemaynotconstitutemedicaladvice,butitwillcomplementitandhelpyoutoanswerquestionsyoumayhave.
Supportlines
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
brainstrust24/7/helpline
brainstrust 01983 292405 brainstrust,4YveryCourt,CastleRoad,Cowes,IsleofWightPO31 7QG
www.brainstrust.org.uk
Withbrainstrust24/7, 365daysayearhelpline,patients,carers,andfamiliescanpickupthephoneoremailandknowtheywillgetanimmediate,personalresponse.
Cancer Information Nurses
CancerResearchUK 0808 800 4040 www.cancerresearchuk.org Forquestionsaboutcancerorfurtherinformation,youcanspeaktoacancerinformationnurseonMondaytoFriday,between9amand5pm.
Cancer Support Line
MacmillanCancerSupport
0808 808 0000 www.macmillan.org.uk Ifyouhaveanyquestionsaboutcancer,needsupport,orifyoujustwantsomeonetotalkto,youcancallfreeMondaytoFriday,between9amand8pm.
Contact a Nurse Helpline
Brain&SpineFoundation
0808 808 1000 [email protected]
www.brainandspine.org.uk/helpline
Thisfreeandconfidentialhelplineallowsyoutocontactanursetodiscussyourbraintumourdiagnosisandanyqueriesyoumayhave.ItisopenMondaytoThursdaybetween9amand2pmand9amto1pmonFridays.
26 Financialsupport Financialsupport 27
Having a brain tumour will, at some point, impact on you financially as well as physically and emotionally.Lookthistigerintheeye.Themorepreparedyouare,themoreyouwillbereadyifyouneedadditionalsupport.Muchbettertobeproactive,thanreactive.Thegoodnewsisthatthereisawealth(pardonthepun)ofhelpoutthere.
Financialsupport
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
National Entitlement Card (NEC)
CityofEdinburghCouncil
0131 200 2351 OneEdinburgh,LevelC.3,WaverleyCourt,4EastMarketStreet,EdinburghEH8 8BG
www.edinburgh.gov.uk/info/20088/public_transport/1091/nec_card_travel_discounts
Thiscardcanprovidecheapertravelforyoungpeople,olderpeopleandpeoplewithadisability.IfthecardisissuedbytheCityofEdinburghcouncilduetodisabilitythecardalsoincludesfreebusandtramtravelacrossScotland.
Macmillan Grants
MacmillanCancerSupport
0808 808 0000 Various [email protected]
www.macmillan.org.uk
Theseareone-offpayments(around250pounds)foradults,youngpeopleorchildrenwithcancer.Toapply,askahealthcareprofessionaltosupplyyouwithanapplicationform.Thegrantteamwillreviewtheapplicationandifapproved,paymentsaregenerallysentoutwithin3workingdays.
28 Complementarytherapies Complementarytherapies 29
There are many reasons why people choose to use complementary therapies.Somepeoplefindtheyhelpthemcopewiththestressescausedbycanceranditstreatments.Manytherapiesarerelaxing,andmayliftyourspiritswhenyouaren’tfeelingyourbest.Complementarytherapiesmayhelpyou:l feelbetterandimproveyourqualityoflifel feellessstressed,tenseandanxiousl sleepbetterl withsomeofyourcancersymptomsl withsomeofthesideeffectsofyourcancertreatmentl feelmoreincontrol
Readontofindoutwhatisavailableneartoyou,andplease,remembertoseektheadviceofyourdoctorbeforestartinganynewtherapy.
Complementarytherapies
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
brainstrust Hypnotherapy Service
brainstrust 01983 292405 brainstrust,4YveryCourt,CastleRoad,Cowes,IsleofWightPO31 7QG
www.brainstrust.org.uk
brainstrustprovidehypnotherapyforbraintumourpatientsandtheircarers.Hypnotherapycanhelpwithanxietyandstress,dietandlifestyle,resilience,self-esteemandconfidence,preandpost-operativecareandpainmanagement.WehaveanetworkofqualifiedhypnotherapistsacrosstheUK.
Borders Holistic Care for Cancer
LavenderTouch 01896 208255 TheLavenderTouch,Unit1,CraftCentre,Tweedbank,Galashiels,ScottishBordersTG1 3RU
www.lavendertouch.co.uk ABorderscharitywhichprovidescomplementarytherapiesforpeoplewhohavecancer.Treatmentscanhelppeopleatanystageoftheirconditionandcanbegivenatthecentre,yourlocalhealthcentre,communityhospitaloryourownhome.
30 Complementarytherapies Complementarytherapies 31
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
Edinburgh Therapies for Cancer
MarieCurieHospice
0131 470 2201 MarieCurieHospiceEdinburgh,45FrogstonRoadWest,EdinburghEH10 7DR
www.mariecurie.org.uk
ThisEdinburghbasedhospiceofferscomplimentarytherapiestobeusedalongsideconventionalmedicaltreatment.Thesetherapiesincludeacupuncture,aromatherapy,Indianheadmassage,reflexologyandreiki.
Managing Stress, Learning Relaxation and Visualisation Course
Maggie’sEdinburgh
0131 537 3131 Maggie’sEdinburgh,WesternGeneralHospital,TheStables,CreweRoad,EdinburghEH4 2XU
www.maggiescentres.org/our-centres/maggies-edinburgh/
Asixweekcourseforanyonewhohasorhaseverhadcanceraswellastheirfamilyandfriends.ThecoursecoversavarietyofmethodsofrelaxationandresourcesincludinginformativehandoutsandarelaxationCD.
32 Holidaysandshortbreaks Holidaysandshortbreaks 33
Going on holiday is a good way to relax and get away from things. Manypeopleliketoplanaholidayfortheendoftheirtreatment.Otherswanttogobeforeorevenduringtreatment.Whetheryou’retravellingforworkorplay,talktoyourdoctorsandnursestohelpyouplan.Theymaybeabletosuggestagoodtimetogo,aswellashelptodecidewhatisrealisticforyou.Herearesomepeoplethatcouldmakeorganisingyournextholidaythatbiteasier.
Holidaysandshortbreaks
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
Isle of Bute Cabin Retreat
Calum’sCabin 07544 979538 Calum’sCabin,“Calenna”MountstuartRoad,Rothesay,ButePA20 9LD
www.calumscabin.com
AcountrysideretreatontheIslandofButewherefamilieswithachildwithcancercancomeandrelax,spendqualitytimetogetherandmakeirreplaceablememories.Thecharityalsohelpswithtravelcoststotheisland.
CLIC Villa Home From Home
CLICSargant 0131 662 1457 CLICVilla,15HattonPlace,EdinburghEH9 1UD
www.clicsargent.org.uk/in-my-area/clic-sargent-homes-from-home/clic-villa
CLICVillaisabeautifullykept,listedVictorianpropertysituatednearEdinburgh’sRoyalHospitalforSickChildren.Thevillahopestodeliverahomefromhomeatmospherewhilstensuringtraveltothehospitalisasconvenientascanbe.
34 Welfareandlegaladvice Welfareandlegaladvice 35
You may be entitled to a range of benefits which can make things easier for you.Butnavigatingthewelfaresystemcanbeahugechallenge,andsometimesyouneedsomeonewhocanguideyouthroughthemazeofhelpthatisavailable.Theseservicesmayalsobeabletoadviseonthingslikegettingabluebadge,yourrightsatworkandotherlegalissuessuchaswillsandpowerofattorney.
Welfareandlegaladvice
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
Midlothian Benefits Service
MacMillanCancerSupportandMidlothianCouncil
0131 271 3910 TheserviceislinkedwithcanceradviceservicesinboththeWesternGeneralHospitalandtheRoyalInfirmaryinEdinburgh.
www.midlothian.gov.uk/info/592/benefits/438/the_welfare_rights_service/5
Thisserviceprovidesbenefitsadviceforpeopleaffectedbycancerandtheirfamilies.Theserviceoffershelpthroughhomevisits,telephoneadvice,formfillingandadvocacy.
Borders Benefit Advice Service
TheBordersMacMillanWelfareBenefitsPartnership
01896 661394 BordersMacmillanWelfareBenefitsPartnershipWelfareBenefitsService,ScottishBordersCouncil,PatonStreet,GalashielsTD1 3AS
www.scotborders.gov.uk/info/603/benefits_advice_and_assessment/1467/borders_macmillan_welfare_benefits_partnership
Thisservicecanmakesureyouarereceivingallthebenefitsthatyouareentitledto.Justphonethenumberprovidedtoarrangeameeting.YoucanseetheadvisorattheMacmillanCentre,BordersGeneralHospitalorathome.
Dumfries and Galloway Citizens Advice Servicev
CitizensAdviceBureau
01387 268286 CancerInformationSupportCentre,DumfriesandGallowayRoyalInfirmary,BankendRoad,DumfriesDG1 4AP
www.dagcas.org
Thisserviceprovidesbenefitsadviceandawalk-inclinicintheCancerInformationandSupportCentreinDumfriesandGalloway.TheclinicisopenonbothWednesdayandFridayfrom10amto12pm.
36 Welfareandlegaladvice Welfareandlegaladvice 37
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
Fife Benefits Advice
MacMillanCancerSupport
01592 647997 MaggiesFife,VictoriaHospital,HayfieldRoad,Kirkcaldy,FifeKY2 5AH
www.maggiescentres.org/our-centres/maggies-fife/
Thisservice,locatedattheVictoriaHospital,providesbenefitsadvicetoanyoneaffectedbycancer.Therearedrop-insessionsonThursdaybetween10.30amand12.30pmoryoucanmakeanappointmenttoseeanadvisoronThursdayafternoonsoronFridaymorningsorafternoons.Thespecialistbenefitsadvisorwillhelpyoucompletebenefitclaimsformsandalsomakesureyouhaveaccesstoanyadditionalsupportthatyoumightbeeligiblefor,suchasparkingpermits.
Benefits Advice Appointments
Maggie’sEdinburgh
0131 537 3131 Maggie’sEdinburgh,WesternGeneralHospital,TheStables,CreweRoad,EdinburghEH4 2XU
www.maggiescentres.org/our-centres/maggies-edinburgh/
Thesepre-bookedappointmentscangiveyouaccesstothecentre’sspecialistbenefitsadvisorwhohasexperienceinthebenefitsclaimsprocessandbenefitentitlements.Theycanhelpyoufilloutclaimsformsandmakesureyouarereceivingeverythingyouareentitledto,meaningthereisonelessthingtoworryaboutinyourcancerjourney.
38 Welfareandlegaladvice Welfareandlegaladvice 39
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
West Lothian Benefits Advice Service
MacmillianCancerSupport
01506 283000 MacmillanInformationPoint(SouthCorridor),WesternGeneralHospital,CreweRoad,EdinburghEH4 2XU
www.macmillan.org.uk/in-your-area/chooselocation.html
ThisserviceisforanyoneeitherlivinginWestLothianorattendingtheWesternGeneralHospitalwhohavebeenaffectedbycancerincludingfamilyandcarers.Theyhaveaholisticapproachtoadviceandwillnotonlylooktomaximiseyourincomethroughavailablebenefits,butwillassistinaccessingotherservicesavailableinWestLothian,includingoccupationaltherapy,ahomesafetyservice,travelconcessions,andmoney,energyandhousingadvice.TheyofferregularadvicesessionsattheWesternGeneralHospital,StJohn’sHospitalandCarmondeanLibrary.Homevisitsarealsoavailable.Pleasegetincontactforfurtherdetails.
Edinburgh Welfare Rights Service
CityofEdinburghMacmillanWelfareRightsPartnership
0131 529 5000 TheAdviceService,249HighStreet,EdinburghEH1 1YJ
www.macmillan.org.uk/in-your-area/chooselocation.html
Thisserviceoffersafreeandconfidentialbenefitsadviceserviceforpeoplelivingwithoraffectedbycancer.Theserviceisalsoopentothefamiliesandcarersofthoseaffectedbycancer.ItisopenMondaytoThursdaybetween9amand4pmandFridaybetween9amand3.40pm.
40 Transportservices Transportservices 41
Getting around if you have a brain tumour can be hard. But it’s something you need to do.Whetherit’sfortreatmentathospital,ortocarryonlivingyourlifetothefullyouwillneedtotravel.Butmanyaffectedbyabraintumourareunabletodrive,andtaxisandpublictransportcanbeexpensiveandconfusing.Don’tworry–youarenotalonehere,andthere’squitealotouttheretogetyouonyourway.
Transportservices
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
Volunteer Drivers for Cancer Treatment
CancerCarsScotland
Variouslocations www.cancercars.co.uk ThisonlineserviceprovidesadatabaseofvolunteerdriverschemesforcancercaretreatmentacrossScotland.Therearecurrently7volunteerdriverschemeslistedintheEdinburghandLothianregion.
Edinburgh Taxicard
EdinburghCityCouncil
0131 469 3891 Travelconcessions,Freepost242,EdinburghEH1 0AH
www.edinburgh.gov.uk/info/20088/public_transport/359/taxicard
IfyourdisabilitymakesusingordinarybusesdifficultyoucanapplyforaTaxicardtohelpyoumakecheaptaxijourneysaroundthecity.Thereareanumberoftaxicompaniesparticipatingintheschemebutpre-bookingthecabandstatinganyspecialrequirementsisessential.ThecardalsoallowsyoutotravelontrainswithintheLothianareaforfree.
42 Respiteandendoflifecare Respiteandendoflifecare 43
When you’re caring for someone full-time or for long periods, you need to have breaks otherwise you may start to feel stressed, resentful or even unwell.Andbelieveitornot,thepersonyouarelookingaftermaywantabreakfromyou!Herearesomeorganisationsthatcouldhelpyouunderstandrespitecare,andtheycanalsohelpyouwithplanningforcaretowardstheendoflife,shouldyouneedtodothis.
Respiteandendoflifecare
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
Edinburgh Palliative Care
StColumba’s
Hospice
0131 551 1381 StColumba’sHospice,15BoswellRoad,EdinburghEH5 3RW
www.stcolumbashospice.org.uk
Thishospiceprovidesarangeofservicesforpatientsandtheirlovedones.Theseservicesincludecomplementarytherapy,counselling,inpatientcareandadayhospice.
Edinburgh Hospice Care
MarieCurie 0131 470 2201 MarieCurieHospiceEdinburgh,FrogsonRoadWest,EdinburghEH10 7DR
www.mariecurie.org.uk/help/hospice-care/hospices/edinburgh
Hereyouwillfindattentiveinpatient,dayandhomecareservicesforpeoplewithcancer.Thehospicealsoprovidesspecialistpalliativemedicinetolocalhospitals.
West Lothian Palliative Care Service
MarieCurie 0150 652 3531 WestLothianPalliativeCareService,MacmillanCentre,StJohnsHospital,HowdenStreetRoad,Livingston,WestLothianEH54 6PP
www.mariecurie.org.uk/help/hospice-care/hospices/edinburgh/services/west-lothian-palliative-care
IfyouarearesidentinWestLothianandarelivingwithanadvanced,progressiveandincurableillnessthisservicecanhelpyouandyourfamilystayincontrol.Theteamcanofferinformationandadvicetoguideandsupportyourdecisions,emotionalandspiritualsupport,assessmentofpainandothersymptoms,andcanhelpyoudevelopawellthoughtoutplanforthetypeofcareyouwishtoreceiveinthefuture.
44 Bereavementsupport Bereavementsupport 45
Bereavementsupport
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
Facilitated Bereavement Support Sessions
NHSLothian 07769 110243 CarmondeanCommunityCentre–TheSouthBarn,FellsRigg,Livingston,WestLothianEH54 8AX
www.westlothian.gov.uk/article/5059/Bereavement-Support
Thisgroupisforanyonewhohasrecentlyexperiencedthedeathofsomeoneclose.Theyofferspaceandtimeforyoutolearnhowtosupportyourselfduringdifficulttimes.Thegroupisfacilitatedby2qualifiedcounsellorswhoareexperiencedinworkingwithbereavedpeople.ItmeetsonthethirdSundayofeachmonthbetween10.30amand12.30pm
Edinburgh Community Bereavement Care
CRUSE 0845 600 2227 CruseBereavementCareScotland,CBCSHeadquarters,RiverviewHouse,FriartonRoad,PerthPH2 8DF
www.crusescotland.org.uk/support.html
Acharityofferingbereavementinformationandsupportprovidedbyanumberoflocalcommunity-basedteams.TheservicesofferedbytheEdinburghteamincludesfacetofacecounselling,telephonecounselling,helpfulleafletsandsupportgroups.
Unfortunately not everyone survives having a brain tumour.Whenapersonyoulookafterdies,youmaybenotonlylosingalovedone,butasacareryoumaybelosingyoursenseofpurposewhenyourcaringroleends.Itmaynotfeellikeit,buttherearemanypeoplewhoyoucanturntoforhelpandsupport,includinghealthandsocialservicesprofessionalswhoarebecomingmoreawareofthisimpact.
Bereavementcareandsupportisavailabletocarers,familyandclosefriendsfromavarietyoforganisations.Familymembersandfriendscanalsoprovideemotionalsupport.
46 Bereavementsupport Bereavementsupport 47
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
Group-based Bereavement Support Programme
ACORN 0131 208 1882 Variouslocations [email protected].
www.homeinstead.co.uk/edinburgh/1314.do/acorns-bereavement-support-programme
Alocalbereavementserviceofferingasix-weekbereavementprogrammeatvariouslocationsinEdinburgh.Thesupportprogrammeisopentoallandcoverstopicsincludingfeelings,cookingforone,money,health,socialisingandthefuture.Discussionstakeplaceoveraseriesof90minutesessions.
Connections Bereavement Support Group
Maggie’sFife 01592 647997 Maggie’sFife,VictoriaHospital,HayfieldRoad,Kirkcaldy,FifeKY2 5AH
www.maggiescentres.org/our-centres/maggies-fife/
Thisbereavementsupportgroupprovidesaplaceforyoutoshareyourthoughtsandfeelingswithothersgoingthroughasimilarexperience.Thisgroupwillhelpyoufindadvice,supportanddevelopimportantcopingstrategies.
Rachel House Children’s Hospice Rainbow Rooms and Support
Children’sHospiceAssociationScotland
01577 865777 RachelHouseChildren’sHospice,AvenueRd,Kinross,Kinross-ShireKY13 8FX
www.chas.org.uk/how_we_help_families/bereavement_support
TheRachelHouseHospiceinKinrosscanofferyouthoughtfulsupportfollowingthelossofyourmuch-lovedchild.Ifyouwish,thehospicegivesyoutheopportunitytospendtimewithyourchildafterhisorherdeathinoneoftheirprivate,calmandrestfulRainbowRooms.Hereyoucanspendtimetogetherasafamily,sayingyourfinalgoodbyes.Ongoingbereavementsupportisavailableforthewholefamilythroughtelephonebefriending,groupsupport,spiritualcare,andrememberingdays.
48 Bereavementsupport Bereavementsupport 49
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
Therapeutic Play for Bereaved Children
Richmond’sHope 0131 661 6818 Richmond’sHope,227NiddrieMainsRoad,EdinburghEH16 4PA
www.richmondshope.org.uk
Thischarityspecificallyaimstohelpchildrenexploretheirfeelingsandfindwaysofcopingwithloss.Usually,childrenwilltakepartinone-to-onetherapeuticplaysessionswhichcanhelpthemexpresstheirthoughtsandpreserveinvaluablememoriesoftheirlovedone.Thesesessionslastforroughly40minutesandareusuallyattendedonceaweekonweekdaysbetween9amand5pm.
50 Whatcanbrainstrustdotohelp? Whatcanbrainstrustdotohelp? 51
Whatcanbrainstrustdotohelp?
HelpavailableAttimesitmayfeellikeit,butyouarenotalone.Everyoneinthebrainstrustcommunityhasexperienceofwhatitisliketobediagnosedandtolivewithabraintumour.Wecanhelpyoutofeellessisolated–weunderstand.Belowareexamplesofthehelpavailabletoyoufrombrainstrust.Don’thesitatetogetintouchandtalktopeoplewhohavebeenwhereyouarenow.We’llhelpyougetbackontopofthings.
Whatcanbrainstrustdotohelp?Formoreinformationaboutanyoftheseresources,visitwww.brainstrust.org.uk,[email protected] 292 405.
Resourcestokeepyouinformedl InformationStandardcertifiedinformation onourwebsitewww.brainstrust.org.uk.Clear,accurate,balanced,
evidence-basedandup-to-dateinformation,certifiedbytheInformationStandard.
l 24/7helpline Weknowthatyoudon’tjustneedtotalktosomeone9-5.
We’vebeenthere.Weknowthefearsandtheneedtotalktosomeonewhounderstandsatallhours.That’swhyyoucancallusanytime.Open24hoursaday,7daysaweek,thebrainstrusthelplineoffersbraintumourpatientsandcarerssupport,informationandpragmaticadviceoverthephoneandbyemail.Call01983 [email protected]
l Helpyoutounderstandtheimplicationsofthediagnosis Abraintumourdiagnosiscanbeveryscary,anditisdifficulttoidentify
whatyouneedandwanttoknow.Wecanchatthroughtheimpactwithyou,tohelpputyoubackincontrol.
l Interpretationofmedicalrecords Medicaljargonandterminologymaybeusedintherecords.
Ifyouchoosetolookatyourrecords(andyouareentitledto)youmayneedhelpunderstandingthem,sointerpretationcanbeprovided.Contactbrainstrustonhello@brainstrust.org.ukorcall01983 292405.
l Helpyouseekasecondopinion Wearemindfulthateveryonereactstoaseriousdiagnosisindifferent
ways.Itisyourrighttoseekfurtheropinions,andthiswillempowersomepeople.Somepeoplewouldprefernottoexercisethisright.Somepeopleprefertoknowaslittleaspossibleabouttheirdiagnosis;somepeopleliketorelinquishcontroloftheirsituationtoothers.Alloftheseareperfectlynormalandacceptablewaysofcoping.Andseekingsecond,eventhirdopinionscancauseconfusionandstress.Buttheycaninform,andhelpwithdecision-making.Theycanalsobereassuring.Wecanonlytalk
52 Whatcanbrainstrustdotohelp? Whatcanbrainstrustdotohelp? 53
fromourexperience.Webelievethatyouneedtobeinformedtomakedecisions.Andthatmightmeangatheringinformationandthendecidingnottomakeadecision.That’sadecisiontoo!Formoreinformationonsecondopinions,visit‘Justbeentold?’onwww.brainstrust.org.uk/advice-symptoms.php
l Clearsignposting brainstrustcanpointyoutowardsvaluableresourcestohelpnavigate
yourjourney.
l www.braintumourhub.org.uk Createdforbraintumourpatientsandcarers,thebraintumourhub
isanauthoritative,easytonavigatedatabaseofbraintumoursupportresourcesandUKbasedbraintumourclinicaltrials.Itisintuitive,easytouse,developedwithclinicians,patientsandcarers,andconstantlyevolvingwithregularupdates.
Resourcestohelpyoufeelmoreincontroll Coaching Atbrainstrustwelisten,listensomemoreandthenaskquestions.
Wefocusonachievingspecificimmediategoals,whichrelatetospecificareas.Forexample,weighinguptheprosandconsofhavingaparticulartreatment,orovercomingaproblemwithcaring.Wealsoknowthatthroughcoaching,clientscanexperienceasenseofhealing,astheymakecourageousdecisionsabouttheirlivesandwork.Coachingfocusesonthefutureandthedevelopmentofaworkablesolution.It’saboutdevelopingstrategiesandclaritytoachieveabetterqualityoflife.
l Counselling Whenthereistoomuchdistressandapsychologicalinterventionis
needed,counsellingcanbeuseful.Itissuitableforsomeonewhoisstrugglingtocopeorfeelingveryanxiousanddepressedandthereforefindingithardtofocusonspecificimmediategoals.Counsellinghasabroaderfocusandgreaterdepththancoachingandsoisusuallyaslower-pacedintervention.Itisconcernedwiththeindividualandtheirrelationshiptoself,aswellaswiththeirfamilyandcommunities.Itislesssolutionfocusedthancoaching(sometimesthereisnosolutiontotheproblem)andinsteadaimstohelptheindividualmakesenseofthesituationinwhichtheyfindthemselvesinordertomakebetterdecisionsaboutwhattheywantandneedforthefuture.Insomesituationsformalcounsellingmaynotbeappropriateandinsteadasupportivelisteningrelationshipmightbemoreuseful.
l Hypnotherapy Thereisplentyofevidencethathypnotherapyhelpspeoplewith
cancerandthosewhocareforthem.Hypnotherapycanbeusedasacomplementarytherapyalongsideconventionalmedicaltreatmentsandforanumberofdifferentpurposes.Hypnotherapycanhelpbraintumourpatientsandcarersto:manageanxiety,reducestress,createadifferentexperienceofpain,buildconfidenceandoptimism,prepareforsurgeryandpromotepost-operativehealing,reducesideeffectsoftreatments,e.g.nauseaandfatigue,optimiseahealthylifestyletobuildresilience.
54 Whatcanbrainstrustdotohelp? Whatcanbrainstrustdotohelp? 55
l SnaggleToothSplat www.brainstrust.org.uk/advice-resources.php#7
Writtenforbrainstrusttohelpparentcarersorpatientsbroachabraintumourdiagnosiswiththeirchildren.ItisabeautifullyillustratedbookandhasfeaturedintheBMAnewsletterandOncologynews.Theforwardhasbeenwrittenbythelovelyactressandbrainstrustsupporter,JulieWalters.Ifyouareaparentwhohasbeendiagnosedwithabraintumour,orarelookingafterapoorlylittlepatient,thenyoucanhaveacopyofthisbook,forfree.
l Who’sWHOinYOURclinicalteam www.brainstrust.org.uk/advice-resources.php#6
Manypatientsfindthattheyarelefttomanagetheircarepathwayforthemselves.brainstrusthasdevelopedthishandyresourcetohelpyounavigateyourjourney.Itoutlinesallthehealthcareprofessionalswhomaybeinvolvedinyourjourneyandtellsyouwhatitistheydo.
Written by Karen BoswellIllustrations by Jason Mortimer
Practicalresourcesyoucanpickupl Brainbox www.brainstrust.org.uk/advice-resources.php#2
Thebrainstrustbrainbox–the‘musthave’supporttoolkitforpeoplewithabraintumourdiagnosisandtheircarers.Weappreciatehowdifficultthingscanbeonceyouarediagnosedwithabraintumour;the‘4.00ammoments’,thetravellingtoandfromappointments,thestreamofquestionsthatpopintoyourhead,tryingtorememberthejobsofallthepeoplethatyou’llmeetonyourjourney,andknowingwhototurntoandwhen.Ajugglingactthatyoudon’tneedwhenyoujustwanttofocusyourenergyonfeelingbetter.Sotoassistbraintumourpatients,weprovidethisuniqueinvaluableaid.
l LittleWhiteBook www.brainstrust.org.uk/advice-resources.php#5
Acomprehensive,easytonavigatecompendiumofUKbraintumoursupportresources.
A compendium of brain tumour support resourcesEdition 1: September 2011
the little
bookwhite
Who’s WHO in YOUR clinical team
Version 2.1: December 2013
HYLYW-2.1 version.indd 1
10/02/2014 15:43
56 Whatcanbrainstrustdotohelp?
Resourcestohelpyoufeellesslonelyl Meetup www.meetup.com/brainstrust
AtabrainstrustMeetup,membersofthebraintumourcommunitygettogethertohavefun.Nomatterwhereyouareonyourjourneyorwhatroleyouhave(suchascarer,patient,healthcareprofessional)youcanshare
experiences,andseekinformationfrompeoplewhoknowwhatyou’regoingthrough.Butonlyifyouwantto.Feelfreetojustcomealongandenjoy.PastMeetupshaveinvolvedpizzaandwine,pubgrub,andcreamteas.
l facebookbrainstrustbraintumoursupportgroup www.facebook.com/groups/braintumoursupportbrainstrust/
Ifyouareonfacebook,youcanjointhisclosedsupportgroupwherealotofveryfriendlypatientsandcarershangout.Itisareallywarmandwelcominggroupwhowillcomfortyou,answerquestions,makeyousmile,andimportantlyareinthesameboatasyou.
l facebookUKbraintumourcarersgroup www.facebook.com/groups/ukbraintumourcarers/
ThisisagrouppageforcarersofpeoplewithbraintumoursintheUK.Itcanbeveryhardandlonelybeingacarer,sothisgroupisforanycarerstoaskothersquestionsaboutcare,offeradvice,haveageneralchat,agoodlaughorrant/soundoffwhenyouneedtowithoutoffendingorupsettingthosetheylookafter.
There are over 55,500 people living with a brain tumour in the UK.brainstrust is the charity and the community that’s here to help thesepeople and those who look after them, whoever they are and no matter where they are on their journey.
We know we don’t have all the answers, but chances are we know someone who does. Get in touch today, for 24/7 help on 01983 292 405or email [email protected]
www.brainstrust.org.uk
The little white book – South East Scotland, edition 1, published by brainstrust April 2016,due for review April 2017.
© brainstrust 2016.Registered charitable trust, brainstrust is a registered charityin England and Wales (1114634), and Scotland (SC044642)
