Post on 07-Mar-2018
A directory of resources to help people affected by a brain tumour
Edition 1: May 2016
the little
bookwhite
Glasgow and surrounding areas
ContentsNetworking 2
Psychological support 8
Support groups 12
Support for carers 16
Support for children 18
Support lines 20
Financial support 22
Complementary therapies 24
Holidays and short breaks 28
Welfare and legal advice 30
Transport services 34
Respite and end of life care 36
Bereavement support 38
What can brainstrust do to help? 42
Introduction 1
IntroductionWeknowhowlostyoucanfeelwhenyouoryourlovedoneisdiagnosedwithabraintumour.Butwealsoknowhowmanyinvaluablesupportservicesthereareavailablelocallythatcanhelpyouateverystepofyourbraintumourjourney.
Hereatbrainstrustwe’vebeenworkingtirelesslywiththehelpofourfantasticvolunteerssearchinghighandlowforuseful,localservicesforpeopleaffectedbyabraintumour.Thisdirectory,focusingonthecharitysector,includesinformationonsomeofthebestoftheseservicesinGlasgow.Wehopeyoufindittobeanauthoritativeguideandthatithelpsyouaccesstheseresourcesinyourareaquicklyandwhenyoumostneedthem.
Wemaynothaveincludedeverythingherejustyet,butwehavebeenabletobringtogethermanysourcesofhelpthatwe’recomfortablewithandthatweregularlyrecommendtoourcommunity.Youcanfindthemostuptodateversionofthisinformation,andmoreonlineatwww.braintumourhub.org.uk
Thingschange.Newserviceswillpopup,andsomemaystopoperatingorchangetheirfocus,butwewillbereviewingtheinformationwithinthisdirectoryeveryyear.Ifthereareanyadditionalservicesthatyouwouldliketoseeinhere,pleasegetintouchwithuson01983 292 405oremailhello@brainstrust.org.uk
ThisguidewouldnothavebeenpossiblewithoutthesupportofTheRankFoundation,TheVeraWolstencroftChildrenandAnimalCharitableTrustandtheNationalLotterythroughtheBigLotteryFund.
Wehopeyoufindituseful.
From Carol and all the team at brainstrust
2 Networking Networking 3
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
brainstrustMeet Ups
brainstrust 07969 702201 Venuesvary.Pleasegetintouchfordetails.
carol@brainstrust.org.uk
www.meetup.com/brainstrust
Anopportunityforpatients,carersandanyoneaffectedtogettogethersociallywithothersandhavefun.Youcanshareexperiencesandseekinformationfrompeoplewhoknowwhatyou’regoingthrough,butonlyifyouwantto.Previousget-togethershavetakenplaceoverpizza,tapasandafternoontea.
Glasgow Support Group
TheBrainTumourCharity
07827 595855 Maggie’sCancerCaringCentre,GartnavelHospital,1053GreatWesternRoad,GlasgowG12 0YN
gus.ironside@thebraintumourcharity.org
www.thebraintumourcharity.org
HeldonthefirstTuesdayofeverymonth,thesemeetingstakeplaceattheMaggie’sCentrewithinthegroundsofGartnavelHospital.Themeetingsstartat1.30pmandfinishataround3pmandareaimedatpatients,familiesandfriendsofanyonediagnosedwithabraintumour.
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
The Monday and Wednesday Groups
HeadwayGlasgow 0141 332 8878 TheRenfieldCentre,260BathStreet,GlasgowG2 4JP
headwayglasgow@btconnect.com
www.headwayglasgow.org
Theseweeklygroupsareforpeoplewithabraininjury.Thegroupsgiveyouachancetohaveateaandachatandtakepartinvariousactivitiestostimulatememory,numberandworduse.Thegroupsrunbetween1.30pmand4pmandoftenprovideinformationonotheroutingsandexternalactivities.Theyalsohaveregularspeakersonavarietyoftopicssuchasbenefitsandlocalorganisations.
The Walking Group
HeadwayGlasgow 0141 332 8878 TheRenfieldCentre,260BathStreet,GlasgowG2 4JP
headwayglasgow@btconnect.com
www.headwayglasgow.org
Thisgroup,opentopeoplewithabraininjury,meetsmonthlyforshortwalksaroundtheGlasgowarea.Longerwalkswillbeavailablebasedondemand.PreviouswalkshavebeentotheGlasgowNecropolis,HogganfieldLochandPollokPark.
Thursday Art Group
HeadwayGlasgow 0141 332 8878 TheRenfieldCentre,260BathStreet,GlasgowG2 4JP
headwayglasgow@btconnect.com
www.headwayglasgow.org
Thesetwo-hourartgroupsforpeoplewithabraininjuryofferachancetounleashyourimaginationinagroupofpeoplewhounderstandwhatyouaregoingthrough.Theactivitiesintheseclassesincludedrawing,painting,claywork,collageandpapiermache.ThegroupstakeplaceeveryThursdaybetween2and4pm.
6 Networking Networking 7
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
Epilepsy Befriending Service
EpilepsyConnections
0141 248 4125 100 WellingtonStreet,GlasgowG2 6DH
info@epilepsyconnections.org.uk
www.epilepsyconnections.org.uk/our-services/befriending-service/
Thisbefriendingservicewillmatchyouwithalike-minded,friendlyandapproachablevolunteerwhowillmeetwithyoufortnightlyandhelpyoutakepartinarangeofsocialactivitiesincludingsports,eatingoutandshopping.Agoodwayofimprovingyourwell-beingandqualityoflife.
Epilepsy Allotment Group
EpilepsyConnections
0141 248 4125 100WellingtonStreet,GlasgowG2 6DH
info@epilepsyconnections.org.uk
www.epilepsyconnections.org.uk/forthcoming-events/
Anallotmentopentoadultswhowishtogainsomehealthyexerciseandmeetupwithotherpeoplewithepilepsywhilstgainingsomeusefulgardeningskillsandexperience.Thereisalsoanopportunitytogrowyourownhealthyproducetotakehome.ThegroupmeetsattheallotmenteveryFridaybetween10.30amand1pm.
Move More Glasgow
MacmillanCancerSupport
0141 287 0241 Various movemore@glasgowlife.org.uk
www.glasgowlife.org.uk/communities/goodmove/movemore/pages/default.aspx
ThischarityhasanumberofactiveclassesintheGlasgowareaforpeoplelivingwithandbeyondcancer.Gentleexerciseclassescanhelpreducefatigue,aidtherecoveryofyourconfidenceandimproveyourmood.Classesincludewalkinggroups,gentlemovement,gardeningandacircuitclass.
8 Psychologicalsupport Psychologicalsupport 9
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
brainstrust Counselling
brainstrust 01983 292405 Various hello@brainstrust.org.uk
www.brainstrust.org.uk
Aprogrammeofcounsellinguniquelydesignedforpatientsandcarersaffectedbyabraintumourdiagnosis.Sessionsmaytakeplaceeitherface-to-faceoroverthetelephonedependingoncircumstances.
The Beatson Counselling Services
BeatsonWestofScotlandCancerCareCentre
0141 301 7000 TheBeatsonWestofScotlandCancerCentre,1053GreatWesternRoad,GlasgowG12 0YN
Contactbytelephoneoraskamemberofstafffordetails.
www.beatson.scot.nhs.uk
Thisserviceaimstohelpyouclarifyanyworryingthoughts,feelingsordifficultiesyoumaybehavingwithyourdiagnosis.Yourcounsellorwilllistentoyou,helpyoumakesenseofyourfeelings,andofferyouemotionalsupport.Theserviceisofferedtobothin-patientsandoutpatientsaswellastheirimmediatefamilybefore,duringandaftertreatment.Getintouchtoarrangeanappointment.
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
10 Psychologicalsupport Psychologicalsupport 11
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
Talking Therapy and Counselling
CancerSupportScotland
0141 337 8199orFreephone0800 652 4531
TheCalmanCentre,75ShelleyRoad,GlasgowG12 0ZE
info@cancersupportscotland.org
www.cancersupportscotland.org
Hereyoucanaccessone-to-onetalkingtherapiesinasafeconfidentialenvironmentfromcounsellorsexperiencedinworkingwithpeopletouchedbycancer.Thisserviceisavailabletoanyoneaffected,includingthosewhohavelostalovedone.
Managing Stress Workshops
Maggie’sGlasgow
0141 357 2269 GartnavelGeneralHospital,1053GreatWesternRoad,GlasgowG12 0YN
glasgow@maggiescentres.org
www.maggiescentres.org/our-centres/maggies-glasgow/whats-on/
These6-weeklongworkshops,runbyaCancerSupportSpecialist,arespecificallydesignedforthoseaffectedbycancer.Thecourseintroducesdifferentmethodsofrelaxationincluding:controllinganxiousthoughts,meditation,visualisationand‘quick’oremergencyrelaxation.
Where Now? Post-Treatment Course
Maggie’sGlasgow
0141 357 2269 GartnavelGeneralHospital,1053GreatWesternRoad,GlasgowG12 0YN
glasgow@maggiescentres.org
www.maggiescentres.org/our-centres/maggies-glasgow/whats-on/
Thisisaseven-weekcourseforanyonewhohasfinishedtheircancertreatment,aswellastheirfriendsandfamily.Itoffersskillsandtechniquestosupportyouthroughthistransitionperiodandbeyond.Sessionslastaroundthreehoursandareledbyacancersupportspecialistandaclinicalpsychologist.
Glasgow Libraries Drop-in Support
MacmillanCancerSupportandCancerSupportScotland
0141 287 2999 Macmillan@GlasgowLibraries,TheMitchell,NorthStreet,GlasgowG3 7DN
macmillan@glasgowlife.org.uk
www.glasgowlife.org.uk/libraries/macmillan-at-glasgow-libraries/your-local-library/Pages/default.aspx
LibrariesthroughoutthecityofGlasgowarehosttoafreeandconfidentialdrop-inserviceforanyoneaffectedbycancer.Hereyoucangetemotionalsupportandhighqualityinformationtohelpyouthroughyourcancerjourney.
12 Supportgroups Supportgroups 13
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
Glasgow Support Group
TheBrainTumourCharity
07827 595855 Maggie’sCentre,GartnavelHospital,1053GreatWesternRoad,GlasgowG12 0YN
gus.ironside@thebraintumourcharity.org
www.thebraintumourcharity.org
Everyoneiswelcometojointhiswarmandinvitinggroupaimedatpatients,familiesandfriendsofanyonediagnosedwithabraintumour.MeetingstakeplaceonthefirstTuesdayofeverymonthfrom1.30pmto3pm.
Glasgow Carer Cafés
CarersLink 0800 975 2131 or 0141 955 2131
MilngavieEnterpriseCentre,EllangowanRoad,Milngavie,GlasgowG62 8PH
www.carerslink.org.uk/courses/groups/
TheCarerCafesmeetonamonthlybasisandareopentoanycarerwhowouldwelcometheopportunitytosocialise,shareinformation,offermutualsupport,drinkcoffee,eatbiscuitsandhavea‘richtguidblether.’Feelfreetocomealongwheneveryoucan.ThegroupmeetsonthesecondFridayofeachmonthbetween10.30amand12.30pm.GroupsarecurrentlyrunninginMilngavie,Kirkintilloch,BishopbriggsandBearsden.
14 Supportgroups Supportgroups 15
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
Brain Tumour Support Group
Maggie’sGlasgow
0141 357 2269 GartnavelGeneralHospital,1053GreatWesternRoad,GlasgowG12 0YN
glasgow@maggiescentres.org
www.maggiescentres.org/our-centres/maggies-glasgow/whats-on/
Thismonthlygroupprovidesanopportunitytotalktootherpeoplewhoareinasimilarsituationtoyou.Groupsofferasafespacetoexpressemotionsyoumightnotwanttosharewithyourfriendsandfamily.Youmightlearnfromthosealittlewayaheadofyouontheirjourneyanddevelopyourownstrategiesforcoping.
North Lanarkshire Brain Tumour Support Group
Maggie’sLanarkshire
07827 595855 Maggie’sLanarkshire,MonklandsHospital,TheElizabethMontgomerieBuilding,Airdrie,LanarkshireML6 0JS
lanarkshire@maggiescentres.org
www.thebraintumourcharity.org/get-support/support-your-local-area/lanarkshire-brain-tumour-support-group/
Thsisopentopeoplediagnosedwithabraintumouraswellastheirfriendsandfamily.Hereyoucantalkandshareexperienceswithotherpeopleinasimilarsituation.TheymeetonthefirstWednesdayofthemonth,between2pmand3.30pm.
Young Person’s Peer Support Group
CLICSargentandMaggie’sGlasgow
0141 301 7680 Maggie’sGlasgow,GartnavelGeneralHospital,1053GreatWesternRoad,GlasgowG12 0YN
Siobhan.McKay@clicsargent.org.uk
www.clicsargent.org.uk
Thissupportivegroupallowsyoungpeoplewithadiagnosisofcancerorleukaemiatoaccesspeersupportwhilstgainingconfidenceandreducingstress.Thegroup,runbyayoungperson’ssocialworker,communityworkerandpsychologist,isforpeopleagedbetween16and24whoareregisteredwithCLICSargent.ThegroupmeetmonthlyonaWednesdaybetween6pmand7.30pm.TheteamalsorunsanumberofgroupoutingswithMaggie’sforafternoontea,ten-pinbowlingandmealsout.YoungpeoplearenotifiedofthegroupsviatheCLICSargentprivateFacebookpageandmustgivepriornoticetotheCLICSargentteamiftheywouldliketodrop-intoasession.
16 Supportforcarers Supportforcarers 17
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
Confident Caring Group
MarieCurie 0141 557 7515 MarieCurieHospice,BalornockRoad,GlasgowG21 3US
confidentcaring@mariecurie.org.uk
www.mariecurie.org.uk
Forcarerswhowouldlikeinformationandadvicetohelpwiththeircaringrole.Ateachsessionyoumeetothersinasimilarsituationtoyourselfinarelaxedenvironment.Twoclinicalnursesleadthesessionscoveringawiderangeoftopics.
East Renfrewshire Carers Centre
EastRenfrewshireCarers
0141 638 4888 Theyhavevariouscentresinthearea.Contactthemtofindtheonenearesttoyou.
enquiries@eastrenfrewshirecarers.co.uk
www.eastrenfrewshirecarers.co.uk
Theyofferafullprogrammetosupportadultandyoungcarers.Servicesincludeinformation,advice,emotionalsupportandashortbreakservice.
Talking Therapy for Carers
CancerSupportScotland
0141 337 8199 orFreephone0800 652 4531
TheCalmanCentre,75ShelleyRoad,GlasgowG12 0ZE
info@cancersupportscotland.org
www.cancersupportscotland.org
Offersonetooneconfidentialcounsellingwithfullyqualifiedcounsellorsforthoseaffectedbycancer.Thesessionscanbetailoredtoyourindividualneedsandcancoverawiderangeofissuessuchasanxiety,relationshipconcernsandfacingchange.
West Glasgow Carers Centre
CarersTrust 0141 959 9871 1561GreatWesternRoad,GlasgowG13 1HN
westcarers@volunteerglasgow.org
www.carers.org
Providesnotjustwrittenresourcesbutalsoadviceandemotionalsupport,aswellasayoungpersonspeersupportgroupandhelpforoldercarers.
18 Supportforchildren Supportforchildren 19
500 children a year are diagnosed with a brain tumour, and there are innumerable families living with the disease.Twothirdsofchildrendiagnosedareleftwithadisability.Familiescanfindcommunicationdifficult,andawarenessofbraintumoursinchildrenislow;thisisdespitethefactthatbraintumoursnowkillmorechildrenthananyotherillnessintheUK.Becauseoftheseuniqueandfrustratingchallenges,thereishelpavailableforyouandyourchild.
Supportforchildren
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
The Butterfly Project
ThePrinceandPrincessofWalesHospice
0141 429 5599 PrinceandPrincessofWalesHospice,71CarltonPlace,GlasgowG5 9TD
carol.graham@ppwh.org.uk
www.ppwh.org.uk/family-carers/how-we-can-help-you
Thispreandpostchildbereavementserviceoffersindividualsupporttoyoungpeopleandchildren(2to18years)aswellastheirparentsthroughone-to-onecounsellingandtherapy.Theyalsorunbereavementgroupsonaregularbasiswhichprovideasafe,friendlyplaceforchildrenandyoungpeopletoexpressandexplorehowtheythinkandfeelaboutthelossofalovedone.
Kids’ Days Maggie’sGlasgow
0141 357 2269 GartnavelGeneralHospital,1053GreatWesternRoad,GlasgowG12 0YN
glasgow@maggiescentres.org
www.maggiescentres.org/our-centres/maggies-glasgow/whats-on/
Theseregularkids’daysaimtogivechildrenwhoareaffectedbyanadult’scancerdiagnosistheopportunitytoaccessusefulsupportandinformationinanengagingway.Theygetthechancetodiscussthoughtsandfears,visitalocalhospital,putatoythroughtheCTscannerandtakepartinexpressivearttherapyclasses.Thedaysrunfrom10amto2pmandmustbeprebooked.
20 Supportlines Supportlines 21
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
brainstrust 24/7 Helpline
brainstrust 01983 292405 brainstrust,4YveryCourt,CastleRoad,Cowes,IsleofWightPO31 7QG
hello@brainstrust.org.uk
www.brainstrust.org.uk
Withbrainstrust’s24/7, 365daysayearhelpline,patients,carersandfamiliescanpickupthephoneoremailandknowtheywillhaveanimmediate,personalresponse.
Macmillan Support Line
MacmillanCancerSupport
0808 808 0000 www.macmillan.org.uk Ifyouhavequestionsaboutcancer,needsupportorjustwantsomeonetotalkto,youcancallMondaytoFridaybetween9amand8pm.
Cancer Information Nurses
CancerResearchUK
0808 800 4040 www.cancerresearchuk.org IfyouhaveanyquestionsaboutcancerorneedmoreinformationyoucanspeakwithacancerinformationnursefromMondaytoFridaybetween9amand5pm.
22 Financialsupport Financialsupport 23
Having a brain tumour will, at some point, impact on you financially as well as physically and emotionally. Look this tiger in the eye.Themorepreparedyouare,themoreyouwillbereadyifyouneedadditionalsupport.Muchbettertobeproactive,thanreactive.Thegoodnewsisthatthereisawealth(pardonthepun)ofhelpoutthere.
Financialsupport
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
Macmillan Grants
MacmillanCancerSupport
0808 808 0000 Various financialguidance@macmilan.org.uk
www.macmillan.org.uk
Theseareoneoffpayments(around250pounds)foradults,youngpeopleorchildrenwithcancer.Toapply,askyourlocalhealthcareprofessionaltosupplyyouwithanapplicationform.Thegrantteamwillreviewtheapplicationandifapproved,paymentsaregenerallysentoutwithin3workingdays.
One-off and Recurrent Grants
TheAndrewandMaryElizabethLittleCharitableTrust
0141 221 8931 LowBeatonRichmondSolicitors,SterlingHouse,20RenfieldStreet,GlasgowG2 5AP
gabrielle@lbr-law.co.uk
grants-search.turn2us.org.uk/grant/the-andrew-mary-elizabeth-little-charitable-trust-13654?iframe=False
Thegrantsareofferedtopeopleinneedofincomesupport,disabilitybenefitsorpensionswholiveintheGlasgowarea.
24 Complementarytherapies Complementarytherapies 25
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
Exercise and Relaxation Classes
Maggie’sGlasgow
0141 357 2269 Maggie’sGlasgow,GartnavelHospital,1053GreatWesternRoad,GlasgowG12 0YN
glasgow@maggiescentres.org
www.maggiescentres.org
Therearearangeofexerciseoptionsavailableatthiscentresuchasyogaandtaichi.Theclassesaretailoredtopeoplewithcancerandflexibletosuityourneeds.
brainstrust Hypnotherapy Service
brainstrust 01983 292405 Various hello@brainstrust.org.uk
www.brainstrust.org.uk
Aprogrammeofhypnotherapyuniquelydesignedforpatientsandcarersaffectedbyabraintumourdiagnosis.Sessionsmaytakeplaceeitherfacetofaceoroverthetelephonedependingoncircumstances.
26 Complementarytherapies Complementarytherapies 27
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
Complementary Therapies
for Cancer
CancerSupportScotland
0141 337 8199 orFreephone0800 652 4531
TheCalmanCentre,75ShelleyRoad,
GlasgowG120ZE
info@cancersupportscotland.org
www.cancersupportscotland.org
Thisserviceoffersarangeofcomplementarytherapiestothoseaffectedbycancer.Therapiesincludereflexology,massage,reiki,andaromatherapy.Getintouchtofindoutwhichdaysthesetherapiesareavailableon.
Glasgow Therapy Sessions
MarieCurie 0141 557 7400 MarieCurieHospice,BalornockRoad,
GlasgowG213US
glasgow.hospice@mariecurie.org.uk
www.mariecurie.org.uk/help/hospice-care/hospices/glasgow/services/day-services#Complementarytherapies
Thereareawiderangeofsafe,naturalandrelaxingtherapiesavailableheretosupplementtraditionalcare.Therapiesinclude:acupressure,acupuncture,aromatherapy,hypnotherapy,Indianheadmassage,massage,reflexology,reiki,relaxationandshiatsu.ThesessionsareavailableforbothpatientsandcarersfromMondaytoFridaybetween10amand4pm.
28 Holidaysandshortbreaks Holidaysandshortbreaks 29
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
Malcolm Sargent House
CLICSargent 01292 671233 MalcolmSargentHouse,24LinksRoad,Prestwick,AyrshireKA9 1QG
MSH@clicsargent.org.uk
www.clicsargent.org.uk
LocatedonAyrshire’sstunningcoastline,MalcolmSargentHouseoffersholidaysforyoungpeopleaffectedbycancerandtheirfamiliesduringandaftertreatment.Theyalsoprovideshorterbreaksduringtheweekendsandinlowseason.
Calum’s Cabin in Rothesay
Calum’sCabin 07544 979538 Calum’sCabin,“Calenna”,MountstuartRoad,RothesayPA20 9LD
booking@calumscabin.com
www.calumscabin.com
AcountrysideretreatontheislandofButewherefamilieswithachildwithcancercancomeandstay.Thecharityalsohelpswithtravelcoststotheisland.
The Kieran Mess Luxury Holiday Home
TheKieranMessFoundation
TheKieranMessFoundation,4SwintonPlace,TheFernsLawthorn,Irvine,AyrshireKA11 2EG
enquiries@thekieranmessfoundation.org.uk
www.thekieranmessfoundation.org/holiday-home.html
TheyofferaluxuryholidayhomeatThurstonManorwhichprovidesarelaxingandcomfortableenvironmentforchildrenwithcancerandtheirfamilies.
30 Welfareandlegaladvice Welfareandlegaladvice 31
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
Benefits Advisor and Welfare Rights Service
Maggie’sGlasgow
0141 357 2269 Maggie’sGlasgow,GartnavelHospital,1053GreatWesternRoad,GlasgowG12 0YN
glasgow@maggiescentres.org
www.maggiescentres.org/our-centres/maggies-glasgow/
Adrop-inservicewhereyoucangethelponwelfarerightsfromMaggie’sownexperiencedandapproachablebenefitsadviser.ThecentreisopenMondaytoFridaybetween9amand5pm.
Glasgow Benefits Service
GlasgowCentralCitizensAdviceBureau
0141 552 5556 1stFloor,88BellStreet,GlasgowG1 1LQ
Submitemailenquiriesthroughthefollowingweblink:www.glasgowcentralcab.org.uk/email.html
www.glasgowcentralcab.org.uk/benefits.html
Atthisdrop-inyouwillfindexperiencedadvisorswhoaretheretohelpyouwitharangeofbenefitsissues,whetheryouareworking,unemployedordisabled.Theycantalkyouthroughthebenefitsyouarecurrentlyentitledtoandcanexplainhowchangesinthebenefitssystemwillaffectyou.
Macmillan Benefits and Rights Service
MacmillanCancerSupport
0141 301 7374 BeatsonWestofScotlandCancerCareCentre,1053GreatWesternRoad,GlasgowG12 0YN
www.beatson.scot.nhs.uk/content/default.asp?page=s21_7
Thebenefitssystemcanbecomplexandconfusing.Whatyouareentitledtodependsonfactorssuchasage,incomeandwhereaboutsintheUKyoulive.Hereyoucanfindoutaboutyourbenefitsrightsandwhocanhelpyoutoclaim.
32 Welfareandlegaladvice Welfareandlegaladvice 33
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
North Lanarkshire Benefits Advice
Maggie’sLanarkshire
01236 771199 Maggie’sLanarkshire,MonklandsHospital,TheElizabethMontgomerieBuilding,Airdrie,LanarkshireML6 0JS
lanarkshire@maggiescentres.org
www.maggiescentres.org/our-centres/maggies-lanarkshire/whats-on/
Hereyoucantalktoatrainedbenefitsadvisoraboutfinancialandpracticalassistancethatyoumaybeentitledto.Assistanceincludeshelpwithfillingoutformstoappealingdecisionsonbenefitclaims.
34 Transportservices Transportservices 35
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
Beatson Patient Transport
BeatsonWestofScotlandCancerCentre
0141 531 3737 BeatsonWestofScotlandCancerCareCentre,1053GreatWesternRoad,GlasgowG12 0YN
www.beatson.scot.nhs.uk/content/default.asp?page=s22_8_10
ThishelpfulserviceorganisestransporttotheBeatsonWestofScotlandCancerCentreforpatientsreceivingtreatment.
Disabled Persons Bus Pass
TransportScotland 0141 333 3211 TransportScotland,BuchananHouse,58PortDundasRoad,GlasgowG4 0HF
www.transport.gov.scot/public-transport/concessionary-travel-people-aged-60-or-disability
ThispassentitlespeoplewithadisabilitytofreeorsubsidisedbustravelsotheycangetaroundScotlandortheirlocalarea.
Volunteer Drivers
AccordHospice 0141 581 2000 AccordHospice,7MortonAvenue,PaisleyPA2 7BW
kenneth.mathie@accord.org.uk
www.accordhospice.org.uk
Ifyouareunderthecareofthehospicetheyprovideavolunteerdriverservicewhereavolunteerwilltransportyoutohospitaltreatments.
36 Respiteandendoflifecare Respiteandendoflifecare 37
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
Specialist Respite Support
PrinceandPrincessofWalesHospice
0141 429 5599 PrinceandPrincessofWalesHospice,71CarltonPlace,GlasgowG5 9TD
info@ppwh.org.uk
www.ppwh.org.uk
Thishospicehasanin-patientwardwhichoffersacomfortableenvironmentforthosepatientsthatmaybenefitfromreceivingmorespecialistsupport.Thehospiceoffersshortstaystocontrolpainandmanagesymptomsandaservicewhichfocusesoncareinthefinaldaysoflife.
Paisley Specialist Palliative Care
AccordHospice 0141 581 2000 AccordHospice,7MortonAvenue,PaisleyPA2 7BW
kenneth.mathie@accord.org.uk
www.accordhospice.org.uk
Serviceshereincludeanin-patientunit,daytherapy,patientandfamilysupportandcomplementarytherapies.Theservicesareavailabletobothpatientsandtheirfamilies.
Renfrewshire Palliative and End of Life Care
StVincent’sHospice
01505 705635 StVincent’sHospice,MidtonRoad,Howwood,Johnstone,RenfrewshirePA9 1AF
info@svh.co.uk
www.stvincentshospice.co.uk
Thishospiceoffersaspecialisedendoflifein-patientunit,adayhospicefocusingonpalliativecare,communitynursespecialistsfocusingonsupportivecare,aconsultant-ledpalliativemedicineoutpatientclinic,anoutpatientpainclinicandpatientfamilysupport.
38 Bereavementsupport Bereavementsupport 39
Bereavementsupport
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
Glasgow Bereavement Support
CruseBereavementCareScotland
0845 600 2227 CruseBereavementCare,CentreChamber,11BothwellStreet,GlasgowG2 6LY
info@crusescotland.org.uk
www.crusescotland.org.uk
ThisserviceoffersregionalisedsupporttothelocalcommunityinGlasgow.Supportincludestelephonesupport,facetofacesupport,informativelocalleafletsandbereavementsupportgroups.
Bereavement Talking Therapy
CancerSupportScotland
0141 337 8199 orFreephone0800 652 4531
CancerSupportScotland,TheCalmanCentre,75ShelleyRoad,GlasgowG12 0ZE
info@cancersupportscotland.org
www.cancersupportscotland.org
Thesecomfortingone-to-onetalkingtherapies,runbytrainedcounsellors,canbespecificallytailoredforthosewhohaveexperiencedthelossofalovedoneduetocancer.
Overnight Telephone Counselling
BreathingSpaceScotland
0800 838587 VariouscontactcentresinClydebank,CardonaldandSouthQueensferry
info@breathingspacescotland.co.uk
www.breathingspace.scot
Thisserviceofferstelephonecounsellingwithspecialistadvisorswhowilllistenandassistyouwithyourconcernsaboutyourmood,thoughtsandfeelings.ThetelephonecounsellingserviceisopenMondaytoThursdayfrom6pmto2amandrightthroughouttheweekendfrom6pmonto6amonMonday.
Unfortunately not everyone survives having a brain tumour.Whenapersonyoulookafterdies,youmaybenotonlylosingalovedone,butasacareryoumaybelosingyoursenseofpurposewhenyourcaringroleends.Itmaynotfeellikeit,buttherearemanypeoplewhoyoucanturntoforhelpandsupport,includinghealthandsocialservicesprofessionalswhoarebecomingmoreawareofthisimpact.
Bereavementcareandsupportisavailabletocarers,familyandclosefriendsfromavarietyoforganisations.Familymembersandfriendscanalsoprovideemotionalsupport.
40 Bereavementsupport Bereavementsupport 41
Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription
North Lanarkshire Bereavement Support Group
Maggie’sLanarkshire
01236 771199 Maggie’sLanarkshire,MonklandsHospital,TheElizabethMontgomerieBuilding,Airdrie,LanarkshireML6 0JS
lanarkshire@maggiescentres.org
www.maggiescentres.org/our-centres/maggies-lanarkshire/whats-on/
Thisgroupisledbyapsychologistandisaimedatpeoplewhohaveexperiencedbereavementduetocancer.Itprovidesanopportunitytotalk,expressemotionsandshareexperiencesinasafeenvironment.Italsoprovidesachancetomeetwithotherpeopleinasimilarsituationwhomayhelpyoudevelopnewcopingstrategies.
42 Whatcanbrainstrustdotohelp? Whatcanbrainstrustdotohelp? 43
Whatcanbrainstrustdotohelp?
HelpavailableAttimesitmayfeellikeit,butyouarenotalone.Everyoneinthebrainstrustcommunityhasexperienceofwhatitisliketobediagnosedandtolivewithabraintumour.Wecanhelpyoutofeellessisolated–weunderstand.Belowareexamplesofthehelpavailabletoyoufrombrainstrust.Don’thesitatetogetintouchandtalktopeoplewhohavebeenwhereyouarenow.We’llhelpyougetbackontopofthings.
Whatcanbrainstrustdotohelp?Formoreinformationaboutanyoftheseresources,visitwww.brainstrust.org.uk,contacthello@brainstrust.org.ukorcall01983 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 292405oremailhello@brainstrust.org.uk
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
44 Whatcanbrainstrustdotohelp? Whatcanbrainstrustdotohelp? 45
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.
46 Whatcanbrainstrustdotohelp? Whatcanbrainstrustdotohelp? 47
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
A selecti
on
of inform
ation
which ca
n be found
in one of our b
rain boxes
48 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 hello@brainstrust.org.uk
www.brainstrust.org.uk
The little white book – Glasgow, edition 1,published by brainstrust May 2016, due forreview May 2017.
© brainstrust 2016.Registered charitable trust, brainstrust is a registered charityin England and Wales (1114634), and Scotland (SC044642)