the little white book - Brainstrust, brain tumour charity Support...like to see in here, please get...

A directory of resources to help people affected by a brain tumour

Edition 1: January 2017

the little

bookwhite

Aberdeen, The Highlandsand surrounding areas

ContentsNetworking 2

Psychological support 8

Support groups 14

Support for carers 20

Support for children 24

Support lines 28

Financial support 32

Complementary therapies 34

Holidays and short breaks 38

Welfare and legal advice 40

Transport services 44

Respite and end of life care 48

Bereavement support 52

What can brainstrust do to help? 56

Introduction 1

IntroductionWeknowhowlostyoucanfeelwhenyouoryourlovedoneisdiagnosedwithabraintumour.Butwealsoknowhowmanyinvaluablesupportservicesthereareavailablelocallythatcanhelpyouateverystepofyourbraintumourjourney.

Hereatbrainstrustwe’vebeenworkingtirelesslywiththehelpofourfantasticvolunteerssearchinghighandlowforuseful,localservicesforpeopleaffectedbyabraintumour.Thisdirectory,focusingonthecharitysector,includesinformationonsomeofthebestoftheseservicesinAberdeenandTheHighlands.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

Aberdeen Cancer Support Drop-in

Maggie’sAberdeen

01224 645928 Maggie’sAberdeen,AberdeenRoyalInfirmary,ElizabethMontgomerieBuilding,WestburnRoad,Foresterhill,AberdeenAB25 2UZ

aberdeen@maggiescentres.org

www.maggiescentres.org/our-centres/maggies-aberdeen/whats-on/

Thisdrop-inserviceoffersyouachancetohaveachatwithaCancerSupportSpecialistforanyquestionsorworriesyoumayhaveaboutcancer.Theexperiencedteamwilllistenandtoguideyoutotheinformationyouneed.Theserviceisavailable9amto5pmonweekdays.Alsoonofferarekid’sdays,talkingheadsworkshops,relaxationsessions,anexpressivewritinggroupandaqigongexerciseclass.

Inverness Cancer Support Drop-in

Maggie’sHighlands

01463 706306 RaigmoreHospital,OldPerthRoad,InvernessIV2 3FL

highlands@maggiescentres.org

www.maggiescentres.org/our-centres/maggies-highlands/whats-on/

Thisdrop-inserviceoffersyouachancetochattoaCancerSupportSpecialistforanyquestionsorworriesyoumayhaveaboutcancer.Theexperiencedteamwilllistenandguideyoutotheinformationyouneed.Theserviceisavailable9amto5pmonweekdays.AlsoavailableareanumberofexercisesessionstailoredforcancerincludingTaChi,QiGong,yogaandaweeklywalkinggroup.

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

Move More Aberdeen

MacmillanCancerSupport

01224 047925 GordonsCentre,CorunnaRd,BridgeofDon,AberdeenAB23 8DU

MoveMore@sportaberdeen.co.uk

www.macmillan.org.uk/in-your-area/local-dashboard/detail/Practical%20help%20and%20support%20groups/8845/Move-More-Aberdeen?proximity=2.13%20miles%20from%20you

Weknowtakingpartinphysicalactivityduringandaftertreatmentcanplayahugeroleinenablingyoutotakebackcontrol.Exercisecanhelpyoupreventandmanagesomeoftheeffectsoftreatment,suchasfatigue,depression,musclewastingandriskstoyourhearthealth.Thisschemeaimstohelpyoutogetactivebyorganisingvariousactivitiesfromgardeningandwalkinggroupstogentlemovementandcircuitclasses.Alltheactivitiesarefreeofchargeandyou’llbewithotherswhoknowwhatyouaregoingthrough.

Inverness Look Good Feel Better

LookGoodFeelBetterandMaggie’sHighlands

Thisone-offmonthlycourseteacheswomenwithcancerhowtomanagesomeofthevisibleside-effectsoftreatment.Thecourse,whichisrunbybeautyprofessionals,introducessomesimpletechniquesthatcanhelpyoufeelmoreconfidentaboutyourchangedappearance.Youwillalsoreceiveafreegoodybagofpremiumbeautyproducts.

Aberdeen and Highlands Coffee Mornings and Networking Groups

CLANCancerSupport

01224 647000 CLANHouse,120WestburnRoad,AberdeenAB25 2QA

enquiries@clanhouse.org

clanhouse.org/local/services/coffee-mornings-aberdeen

Thesewelcomingcoffeemorningsofferanopportunitytomeetotherswhoknowwhatyouaregoingthrough.ThecoffeemorningsareheldonthefirstSaturdayofthemonthfrom10am–12noonandnobookingisrequired.Themorningscost£2whichincludesunlimitedtea/coffee,homebakesandoftenasaleofgoodqualitybooks.Thischarityalsooffersartandcraftworkshops,healthwalks,andknitting/crochetgroups.Othercoffeemorningsandnetworkinggroupsarealsoavailableatvariouscentresthroughoutthehighlands.

Weekly 5kmPark Runs

parkrunUK Variouslocations www.parkrun.org.uk/events/events/ Thesefree,weekly,5kmtimedrunstakeplaceinpleasantparklandsurroundingsthroughouttheUK.Theyareopentopeopleofallabilities,canbecompletedatyourownpace,andcanactasgreatstressrelievers.Participantscanbenefitfromthesociableandtherapeuticnatureoftheeventsandtheassociatedvolunteeringopportunitiescanbehighlyrewarding.Allrunsstartat9amonSaturdaymorning.TherearecurrentlysixparkrunsintheAberdeenandHighlandsarea.

8 Psychologicalsupport Psychologicalsupport 9

Aberdeen Counselling Support

TheRosemountCentreforComplementaryTherapies

01224 636378 TheRosemountCentre,1CMountStreet,AberdeenAB25 2RA

www.rosemountcentre.com/a-variety-of-therapies/counselling/

Weknowthatabraintumourcansometimesleaveyoufeelingpowerless.Thisservicecanhelpyouthroughtimesofstress,anxietyanddepressionthroughcounselling.Theservicegivesyoutheopportunitytoexploreyoursituationandfeelings,inasafeandconfidentialenvironment,whichcanhelpenergiseyouandperhapsenableyoutofindawayforward.

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

Aberdeen and Highlands Emotional Support and Counselling

CLANCancerSupport

01224 647000 CLANHouse,120WestburnRoad,AberdeenAB25 2QA

clanhouse.org/local/services/emotional-support-counselling-aberdeen

Hereyouwillfindinformationaboutcancer-relatedissuesaswellasone-to-oneemotionalsupport.Theserviceisrunasadrop-infromMondaytoFriday,9am–4.30pmwithalateopeninguntil7pmonThursdaysandamonthlysessiononthefirstSaturdayofthemonthfrom9.30am–1pm.Morein-depthsupportisofferedbyateamofprofessionalcounsellorswhocanoffersupportface-to-faceorbytelephonewhenbookedinadvance.Thisserviceisalsoavailableatvariouscentresthroughoutthehighlands.

Online Video Talking Therapy

CancerSupportScotland

0800 652 4531 info@cancersupportscotland.org

www.cancersupportscotland.org/services/online-video-talking-therapy/

ThischarityunderstandsthatvisitingtheircentreatGartnavelforsupportisnotalwaysanoption.Therefore,theynowofferanonlineVideoTalkingTherapy(OVTT)service.Thisallowspeopletobookappointmentsandaccesssupportfromthecomfortoftheirownhome,atasuitabletimeduringthedayusingSkype.Thesessionshavethesamestructureandcontinuityofface-to-facetherapyandareconductedinaprivateroom,maintainingthesamestandardsofprivacyandconfidentiality.

Aberdeen Young Persons Counselling

01224 573892 1AlfordPlace,AberdeenAB10 1YD

acisyouth.office@mhaberdeen.org.uk

www.mha.uk.net/services/youth/index.php

Thiscounsellingandinformationserviceisaimedatyoungpeoplebetweentheagesof12and18livinginAberdeenCity.Theserviceprovidesconfidentialtherapeuticcounsellinginasafespacetohelpyoungpeopletocometotermswithconflict,distress,lossorachangeintheirlife.

14 Supportgroups Supportgroups 15

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

Grampian Brain Tumour Support Group

TheBrainTumourCharityandCLANCancerSupport

07827 595855 CLANCancerSupport,120WestburnRoad,AberdeenAB25 2QA

gus.ironside@thebraintumourcharity.org

www.thebraintumourcharity.org/get-support/support-your-local-area/grampian-support-group/

Thesemonthlymeetings,heldatCLANhouse,areopentoanyoneaffectedbyabraintumour.Theyareachanceforpatients,familiesandfriendstogainpeersupportinasafeandwelcomingenvironment.

Inverness Brain Tumour Network Group

Maggie’sHighlands

Thisgroupisformenandwomenwithbraintumoursandtheircarers.Thegroupprovidesanopportunitytotalktootherpeoplewhoareinasimilarsituationtoyou,shareexperiencesandexpressemotionsyoumightnotwanttosharewithyourfriendsandfamily.Itisalsoagreatopportunitytolearnfromthosealittlewayaheadofyouintheirjourneyanddevelopyourowncopingstrategies.Thegroupisrunasadrop-inandtakesplaceonthesecondMondayofeverymonth,between1.30pmand2.30pm.Thecentrealsorunsothercancersupportgroupssuchasthefriendsandfamilygroupandthelivingwithadvancedcancergroup.

Highlands Brain Injury Support Groups

HeadwayHighland

07767 416006 VariouslocationsintheHighlands

leeheadway@yahoo.com

www.headwayhighland.org.uk

Thesefriendlysupportgroupsfocusonsocialactivitiessuchasartsandcrafts,boardgames,tabletennis,bowling,quiz’sorjusthavingachatoveratea/coffee.Fromtimetotime,thereareguestspeakerstodeliveratalk/presentationonatopicthatisofinteresttothegroupandsomesessionshaveaneducationalelementwherethegroupdiscussatopicrelatedtobraininjury,forexample,fatigue.SupportgroupsareavailableinCaithness,Inverness,FortWilliam,NairnandDingwall.

Aberdeenshire Brain Injury Support Groups

HeadwayGrampian

07917787826 23NorthSilverStreet,AberdeenAB10 1RJ

www.headway.org.uk/supporting-you/in-your-area/groups-and-branches/scotland/brain-injury-grampian/

Thischarityhostsmonthlymeetingforpeopleaffectedbybraininjuries.Thesemeetingsusuallyhaveaspeakeronadiversesetofsubjectswhichisfollowedbytimetochatandsocialiseandhaveacoffeeortea.ThesupportgroupsarealsoavailableinInverurieandElgin.

PINK Cancer Support Group

CLANCancerSupport

01224 647000 CLANCancerSupport120WestburnRoad,AberdeenAB25 2QA

clanhouse.org/services/support-services/support-groups/

Thisgroupoffersfriendshipandsupporttowomenaffectedbycancer.TheGroupmeetsonthesecondTuesdayofthemonthat7.30pm.

Ballater Support Group

CLANCancerSupport

01339 756318 VictoriaRd,BallaterAB35 5QX

clanhouse.org/local/services/support-groups-ballater

Thissupportgroupsofferasocial,friendlyenvironmenttogainpeersupport.Thegroupmeetsat4pmonthelastWednesdayofthemonthatBallaterGolfClub.

‘Peedie Blether’ Orkney Support Group

CLANCancerSupport

01856 873393 CLANCancerSupport,30VictoriaStreet,KirkwallKW15 1DN

orkney@clanhouse.org

clanhouse.org/local/services/peedie-blether-sessions-orkney

The‘PeedieBlether’supportgroupoffersfriendshipandpeersupportinasocialenvironment.Thereisnobookingrequiredandeveryoneiswelcometocomealongforacoffeeandachat.ThegroupmeetsonthelastSaturdayofthemonthfrom10.30am–12.30pmatthecharity’ssupportandwellbeingcentreinKirkwall.

Elgin Men’s and Ladies Cancer Support Group

CLANCancerSupport

01343 544132 CLANCancerSupport,227HighStreet,ElginIV30 1DJ

elgin@clanhouse.org

clanhouse.org/local/elgin/

Thesetwoinformalgroupsofferpeersupportandfriendshiptomenandwomenaffectedbycancer.Themen’sgroupmeetsonthefirstThursdayofthemonthat10amandweeklyonaTuesdayfrom5.30pmwhilsttheladiesgroupmeetsonthefourthFridayofthemonthfrom2– 4pm.

20 Supportforcarers Supportforcarers 21

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

Aberdeen Parent Carer Support

VSA 01224 358550 ElaineDukes,38CastleStreet,AberdeenAB11 5YU

elaine.dukes@vsa.org.uk

www.vsa.org.uk/children-and-families/parent-carer-support/

Hereyoucanafinddedicatedinformationworkerforparentcarerswhocansignpostyoutorelevantsupportservicesandresources.Weknoweachfamilyhasdifferentsupportandassistanceneedsandthisserviceaimstoprovideaflexibleandadaptiveapproach,ensuringeachfamilyachievethebestpossibleoutcomesforeveryoneinvolved.

Orkney Young Carer Support

OrkneyYoungCarersService

01856 870500 OrkneyYoungCarersService,OrkneyCarersCentre,KirkwallTravelCentreWestCastleStreet,KirkwallKW15 1GU

youngcarers@crossroadsorkney.co.uk

www.orkneyyoungcarers.org/whattheoycsoffers.html#top

ThiscentrehostsfreemonthlyactivitysessionsforYoungCarerstomeetnewpeople,relax,havefunandtakeabreakfromtheircaringresponsivities.Thecentreoffersonetooneorgroupsupportsessions,abefriendingservice,counsellingandanassessmentofaYoungCarersresponsibilitiesandneeds.

Highland Carer Support Groups

ConnectingCarers 01463 723560 GlenOrrinHouse,HighStreet,DingwallIV15 9TF

carers@connectingcarers.org.uk

connectingcarers.org.uk/carers-services/support-activity-groups.aspx

ThischarityhostslotsofsupportgroupsallovertheHighlandsforcarers.Theygiveyouthechancetomeetothersinsimilarsituations,learnnewskillsorjusthaveachatoveracoffee.Thecharityalsooffersabookgroup,craftgroupandrespitebreaksforHighlandcarers.

22 Supportforcarers Supportforcarers 23

Highland Connecting Young Carers

ConnectingCarers 01463 723562 GlenOrrinHouse,HighStreet,DingwallIV15 9TF

carers@connectingcarers.org.uk

connectingcarers.org.uk/carers-services/connecting-young-carers.aspx

Thischarityworkswithyoungcarersbetweentheagesof5and24tohelpthembebetterinformed,bettersupportedandbetterconnectedtootheryoungcarersinHighland.Thecharityprovidesthoughtfulsupportanddaysoutwhichmayincludetheatretrips,artprojectsandactivitydays.Alsoonofferisadviceaboutgrantsandvariousskillbuildingactivities.

Orkney Carer Centre

CrossroadsOrkney 01856 87 0500 CrossroadsOrkney,OrkneyCarersCentre,KirkwallTravelCentre,WestCastleStreet,Kirkwall,OrkneyKW15 1GU

carers@crossroadsorkney.co.uk

www.crossroadsorkney.co.uk/pg/centre.html

Thisdrop-incentrecanprovideyouwithinformationandadviceaboutissuesaffectingcarerssuchasbenefitstoboththecarerandthedependent,supportservicessuchasdaycare,homecare,befriendingservice,respitebreaks,aidsandadaptions,powerofattorneyandtransport.Theyalsoofferemotionalsupport,carertrainingandadvocacy.

24 Supportforchildren Supportforchildren 25

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

Aberdeen Children and Teens Group

CLANCancerSupport

lisa.maxwell@clanhouse.org

clanhouse.org/local/services/children-teens-groups

Thesegroupsprovidesocialandfunactivitiesforchildrenandyoungpeopleaffectedbycancer.TheyareusuallyheldmonthlyonSaturdaysandmoreregularlyduringschoolholidays.ThecharityhaspublishedtwobooksforchildrendealingwithacancerdiagnosisandcanofferadedicatedspaceatCLANHouseforchildren,youngpeopleandtheirfamiliesequippedwithtoys,gamesandbooks.ChildrenandfamilysupportisalsoavailableinElgin,InverurieandShetland.

Aberdeen Tailored Children and Family Support

Children1st 0131 446 2300 83WhitehouseLoan,EdinburghEH9 1AT

cfs@children1st.org.uk

www.children1st.org.uk

Thishands-oncharitygivessupporttofamiliesunderstressinmanyofScotland’scommunitiesincludingAberdeen,MorayandInverness.Theyofferatailoredapproachtosuiteachfamily’sneedsincludingdirectsupportforchildren,tailoredtotheirage,circumstancesandwishes.

26 Supportforchildren Supportforchildren 27

Aberdeen Kids’ Days

Maggie’sAberdeen

Kid’sdaysarerelaxedandfunorganiseddaysaimedatchildrenwhohaveaparentorothercaregiverwithadiagnosisofcancer.Hereyouwilllearnhowtotalkmoreconfidentlyaboutcancerandsharefeelingsasafamily.Thedayswillalsohelpchildrentobecomemoreknowledgeableaboutcancer,thehospitalandcancertreatment.

28 Supportlines Supportlines 29

Support lines are an invaluable service available to brain tumour patients and their carers.Theyareoftenavailablewhenaclinicianisn’t,andtheadvicecanbeobjective.Someofthehelplinesaredrivenbypatientandcarerexperience,meaningthepersonontheendofthephonemayknowexactlywhatyouaregoingthrough.Thephonesupportyoureceivemaynotconstitutemedicaladvice,butitwillcomplementitandhelpyoutoanswerquestionsyoumayhave.

Supportlines

brainstrust24/7 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

0808 808 0000 www.macmillan.org.uk Ifyouhavequestionsaboutcancer,needsupportorjustwantsomeonetotalkto,youcancallMondaytoFridaybetween9amand8pm.

Cancer Information Nurses

CancerResearchUK

0808 800 4040 www.cancerresearchuk.org IfyouhaveanyquestionsaboutcancerorneedmoreinformationyoucanspeakwithacancerinformationnursefromMondaytoFridaybetween9amand5pm.

Contact a Nurse Helpline

Brain&SpineFoundation

0808 808 1000 helpline@brainandspine.org.uk

www.brainandspine.org.uk/helpline

Thisfreeandconfidentialhelplineallowsyoutocontactanursetodiscussyourbraintumourdiagnosisandanyqueriesyoumayhave.Thehelplineisopeneveryweekdaymorningbetween9amand2pmfromMondaytoThursdayand9amto1pmonFridays.

30 Supportlines Supportlines 31

Brain Tumour Action Telephone Helpline

BrainTumourAction

0131 466 3116 BrainTumourAction,25AnnStreet,EdinburghEH4 1PL

administrator@braintumouraction.org.uk

braintumouraction.org.uk/index.php/how-can-we-help/

Thishelplineofferssupport,informationandcounsellingoverthephone.Theserviceworksasa24-houranswerphone.Simplyleaveyourdetailsafterthetoneandtheywillgetbacktoyou,nearlyalwayswithinthesameday.Supportcanalsobeofferedbyemail.

32 Financialsupport Financialsupport 33

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

Macmillan Cancer Grants

0808 808 0000 financialguidance@macmilan.org.uk

www.macmillan.org.uk

Theseareone-offpayments(around250pounds)foradults,youngpeopleorchildrenwithcancer.Toapply,askyourlocalhealthcareprofessionaltosupplyyouwithanapplicationform.Thegrantteamwillreviewtheapplicationandifapproved,paymentsaregenerallysentoutwithin3workingdays.

CLIC Sargent Grant for Young People

CLICSargent 0300 330 0803 welfareadvice@clicsargent.org.uk

www.clicsargent.org.uk/content/financial-support

Theseareone-offgrantsthatareofferedtochildrenandyoungpeoplewithcancer,andtheirfamilies,assoonastheycomeintocontactwithCLICSargentSocialWorker.Theycanhelpeasethesuddenfinancialdemandsthatacancerdiagnosiscanbringbycoveringcostsoffood,travelandotherday-to-dayexpenses.Thegrantisavailableatanytimewithinthefirst12monthsofdiagnosis.

34 Complementarytherapies Complementarytherapies 35

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

Inverness Relaxation, Yoga and Creative Therapies

Maggie’sHighlands

Thiscentreoffersavarietyoftherapiesandclasseswhicharespecificallydesignedforpeoplelivingwithcancer.Thisincludesanexpressiveartclass,creativewritingsession,arelaxationandvisualisationgroupandayogaclassforbeginners.

Aberdeen and Highlands Complementary Therapies

CLANCancerSupport

clanhouse.org/local/services/complementary-therapies-aberdeen

Thischaritycanoffervarioustherapiestailoredtocancerwhichincludemassage,aromatherapy,reflexology,energyhealing,homoeopathy,reiki,shiatsu,aquadetoxandmistletoetherapy.Theyalsorunrelaxationandvisualisationclassesandagentleyogagroup.Thesetherapiesarealsoavailableatvariouscentresthroughoutthehighlands.

36 Complementarytherapies Complementarytherapies 37

Aberdeen Salon and Nutrition Workshops

CLANCancerSupport

clanhouse.org/local/services/the-salon-aberdeen

Theseworkshopsarespecificallydesignedwithcancerpatientsinmind.ThereisawigstylingandhaircuttingworkshopavailableweeklyonMondaysfrom9.30am–2.30pmandamonthlysessiononTuesdaysfrom10am–1pmwhichalsooffersone-to-oneskinconsultations.One-to-oneconsultationswithanexperiencednutritionistareavailableonWednesdayafternoonswithapre-booking.ThesenutritionsessionsalsoincludeaselectionofcomplimentarylunchtimetastersavailableeveryWednesdayfrom12 noon–1pm.

Aberdeen Relaxing Holistic Therapies

TheRosemountCentreforComplementaryTherapies

01224 636378 TheRosemountCentre,1CMountStreet,AberdeenAB25 2RA

clanhouse.org/local/services/the-salon-aberdeen

Thiscentreoffersawiderangeoftherapieswhichcanbeusedtoaidgeneralwell-beingandrelaxation,aswellassupportingyouindealingwithmedicalconditions.Sometherapieswillfocusmoreonthephysicalaspectswhilstothersaddressmentalandemotionalwell-beingaswell.

38 Holidaysandshortbreaks Holidaysandshortbreaks 39

Going on holiday is a good way to relax and get away from things. Manypeopleliketoplanaholidayfortheendoftheirtreatment.Otherswanttogobeforeorevenduringtreatment.Whetheryou’retravellingforworkorplay,talktoyourdoctorsandnursestohelpyouplan.Theymaybeabletosuggestagoodtimetogo,aswellashelptodecidewhatisrealisticforyou.Herearesomepeoplethatcouldmakeorganisingyournextholidaythatbiteasier.

Holidaysandshortbreaks

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

TheyofferaluxuryholidayhomeatThurstonManorinIrvinewhichprovidesarelaxingandcomfortableenvironmentforchildrenwithcancerandtheirfamilies.

40 Welfareandlegaladvice Welfareandlegaladvice 41

You may be entitled to a range of benefits which can make things easier for you. Butnavigatingthewelfaresystemcanbeahugechallenge,andsometimesyouneedsomeonewhocanguideyouthroughthemazeofhelpthatisavailable.Theseservicesmayalsobeabletoadviseonthingslikegettingabluebadge,yourrightsatworkandotherlegalissuessuchaswillsandpowerofattorney.

Welfareandlegaladvice

Banff & Buchan Citizens Advice Bureau

MacmillanCancerSupportandAberdeenCitizensAdviceBureau

01779 481 881 48MarischallStreet,TopFloor,PeterheadAB42 1HS

macmillanproject@aberdeenshirecab.casonline.org.uk

www.macmillan.org.uk/in-your-area/local-dashboard/detail/Benefit%20advice%20services/8274/Banff---Buchan-Citizens-Advice-Bureau?proximity=27.23%20miles%20from%20you

ThisinformationandadviceserviceisavailabletoanyonereceivingtreatmentforcanceratAberdeenRoyalInfirmaryaswellastheirfamily.Theycanofferadviceonawiderangeofissuessuchasbenefits,grants,housing,debtandemployment.

Free Confidential Welfare Advice

AberdeenCitizensAdviceBureau

01224 569750 www.aberdeencab.org.uk ThisservicehasbeenprovidingadviceandinformationtothepeopleofAberdeenforover70years.Allclientsareofferedfree,impartialandconfidentialadviceonissuessuchasbenefits,debt,work-relatedproblems,relationshipsandhousing.

Aberdeen Cash In Your Pocket Referrals

CashInYourPocketPartnership

01224 686077 RTLG-ZRAX-CXCU,C/oACVO,38CastleStreet,AberdeenAB11 5YU

www.ciyp.co.uk ThisservicecoordinatesanonlinedirectoryofinformationonserviceswhichofferhelptopeoplestrugglingfinanciallyinAberdeenshire.ThedirectoryalsoallowsforanimmediatereferraltotheCashInYourPocketPartnershipinordertoputyouintouchwiththemostrelevantorganisationsandgetthehelpyouneed.

42 Welfareandlegaladvice Welfareandlegaladvice 43

Inverness Specialist Benefits Advisor

Maggie’sHighlands

Weknowthatlivingwithabraintumourcanimpactyourfinances,throughlostincomeandincreasedcostssuchasheatingandtravel.Ifyou,orsomeoneyoucarefor,islivingwithcancer,thespecialistBenefitsAdvisoratthiscentrecanhelpyoucompleteformsandalsoaccessanyadditionalsupportthatyoumightbeeligiblefor,suchasparkingpermits.

44 Transportservices Transportservices 45

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

CLAN Haven Aberdeen

CLANCancerSupport

01224 647000 120WestburnRd,AberdeenAB25 2QA

haven@clanhouse.org

clanhouse.org/services/support-services/clan-haven/

ThisB&Bisavailabletoanyoneaffectedbycancerwhoisattending,oraccompanyingafriendorrelativeto,Aberdeenhospitals.Thefacility,situatedjust20minuteswalkfromAberdeenRoyalInfirmary,hasbeendesignedtopromoteacalm,relaxedatmospherewithdedicatedstaffonhandtoprovidepracticalandemotionalsupportduringyourstay.Tohelpcoversomeofthecoststhereisaminimumdonationof£30perpersonpernightforbed,asimplebreakfastandtransporttothehospitalifavailable.ForthoseattendingtheBalfourHospital,ortravellingfromtheislandsviaKirkwalltohospitalsontheScottishmainland,CLANHavenOrkneyisavailable.

Volunteer Drivers for Cancer Care Treatment

CancerCarsScotland

www.cancercars.co.uk ThisdatabaselistsnumerousvolunteerdrivingschemesforcancertreatmentinScotland.Thiswebsiteisdesignedtoassisthealthprofessionals,peoplewithcancer,theirrelativesandfriendstofindvoluntaryorganisationsinScotlandwhichprovideapersonaltransportservicetohospitalappointments.

46 Transportservices Transportservices 47

Elgin Hospital Volunteer Transport

CLANCancerSupport

01343 544132 CLANCancerSupport,227HighStreet,ElginIV30 1DJ

elgin@clanhouse.org

clanhouse.org/local/services/transport-elgin

ThischarityaimstoprovidetransportviaateamofvolunteerdriverstothosetravellingtoandfromAberdeenhospitals,CLANHouseinAberdeen,DrGray’shospitalinElginandRaigmorehospitalinInverness.Pleasecalltofindoutiftheycanhelpyou.

48 Respiteandendoflifecare Respiteandendoflifecare 49

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

Inverness Inpatient unit

HighlandHospice 01463 243132 HighlandHospice,NessHouse,1BishopsRoad,InvernessIV3 5SB

generalenquiries@highlandhospice.org.uk

highlandhospice.org/care-services/in-patient-unit

Thisinpatientunit,locatedatInvergordonCommunityHospitalintheFyrishward,providescareforpeoplewhoareaffectedbycancerandnon-cancerlife-limitingillnessesandthoseclosetothem.Theserviceaimstotreatpatientsandtheirfamiliesasindividualsandhelpwitheveryone’suniquephysical,psychological,spiritualandsocialneeds.

Inverness Day Therapy

highlandhospice.org/care-services/day-therapy-services

Thisdaytherapyserviceprovidesincreasedsupporttopatientsbeingcaredforathome,andtotheircarers.Ateamofspecialiststaffofferawiderangeofactivitieswhichincludeone-to-onesupport,groupsupport,exercise,arts&crafts,footcare,beautyservices,tripsandlifestorywork.ThedaytherapyservicesareavailableTuesday,WednesdayandFridayeachweekbetween10.30amand3pmandvolunteerdrivertransportifavailable.

50 Respiteandendoflifecare Respiteandendoflifecare 51

Inverness Family Support

highlandhospice.org/care-services/family-support-services

Thisfamilysupportservicehasafocusonsupportingpatientsandtheirfamiliesduringillnessandintobereavement.Theycanrespondtoavarietyofpatientandfamilyneedsthroughinvolvementincareorplanningforapatient’sdischarge,formfilling,emotionalsupporttoallfamilymembers,spiritualorreligioussupport,andoutreachbereavementsupportevenforthemoreremoteareasofthehighlands.

52 Bereavementsupport Bereavementsupport 53

Bereavementsupport

Aberdeen Cancer Bereavement Group

Maggie’sAberdeen

Ifsomeoneclosetoyouhasdiedfromcancerthiscentrecanhelpyou.Thisbereavementsupportgroupisaplacetospeaktoothersgoingthroughasimilarexperienceandfindadvice,supportandstrategiesforcoping.Itcoversbothemotionalandpracticalconcerns,fromtheday-to-dayimpactofbereavementtodealingwithanniversariesandrebuildingyourlife.Ifyouwouldpreferone-to-onebereavementsupportthatisalsoavailablehere.

Friendship After Bereavement Group

CLANCancerSupport

clanhouse.org/services/support-services/support-groups/

Thisgroupoffersfriendshipandsupporttoanyonewhohasbeenbereaved.NewmembersarewelcomebutareaskedtocontactCLANbeforecomingalongforthefirsttime.ThegroupmeetsatCLANHouseeveryMondayeveningfrom7.30pm.

Unfortunately not everyone survives having a brain tumour.Whenapersonyoulookafterdies,youmaybenotonlylosingalovedone,butasacareryoumaybelosingyoursenseofpurposewhenyourcaringroleends.Itmaynotfeellikeit,buttherearemanypeoplewhoyoucanturntoforhelpandsupport,includinghealthandsocialservicesprofessionalswhoarebecomingmoreawareofthisimpact.

Bereavementcareandsupportisavailabletocarers,familyandclosefriendsfromavarietyoforganisations.Familymembersandfriendscanalsoprovideemotionalsupport.

54 Bereavementsupport Bereavementsupport 55

The Faces of Loss Inverness Group

Maggie’sHighlands

Thisdrop-ingroupsession,runbyaPsychologistandaCancerSupportSpecialist,isforpeoplewhoarelivingwithbereavementduetocancer.ThesessionisheldonthesecondWednesdayofeverymonthbetween5.30pmand7pm.

Grampian Support for Bereaved Children and Young People

GrampianChildBereavementNetwork

01224 594099 TheCo-ordinator,GrampianChildBereavementNetwork,c/oMHA,1AlfordPlace,AberdeenAB10 1YD

coordinator@gcbn.org.uk

www.gcbn.org.uk

Thisorganisationisacentralpointofreferralforchildrenwhohavebeenbereaved.Theservicecanreferontonationalandlocalresourcessuchasreferralstonumerousbereavementcounsellingservices.

56 Whatcanbrainstrustdotohelp? Whatcanbrainstrustdotohelp? 57

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

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.

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

of inform

which ca

n be found

in one of our b

rain boxes

62 Whatcanbrainstrustdotohelp? Notes 63

Resourcestohelpyoufeellesslonelyl Meetup www.meetup.com/brainstrust

AtabrainstrustMeetup,membersofthebraintumourcommunitygettogethertohavefun.Nomatterwhere

youareonyourjourneyorwhatroleyouhave(suchascarer,patient,healthcareprofessional)youcanshareexperiences,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.

64 Notes

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 January 2017, due forreview January 2018.

the little white book - Brainstrust, brain tumour charity Support...like to see in here, please get...

Documents

Patient Guide Introduction - Brainstrust, brain tumour charitybrainstrust.org.uk/wp...patient_guide-introduction.pdf · l Hypnotherapy There is plenty of evidence that hypnotherapy

Wilm's tumour

brainstrust newsletter - log book five

Anti Tumour

Tumour marker

Tumour Cells

Burkitt-like in English tumour and ofthe derived tumour

Tumour detection

Tumour Viruses

until tumour progression until tumour progression

Tumour heterogeneity and tumour progression in …cpo-media.net/ECP/2019/Congress-Presentations/1289...Tumour heterogeneity and tumour progression in NENs Endocrine Pathology Session:

Tumour immunology

Tumour immunotherapy

01983-Informes Corto-largo y Pptal Auditoria Quintana

Glasgow and surrounding areas - brainstrust tumour support Glasgow.pdf · Glasgow and surrounding areas. Contents ... Welfare and legal advice 30 ... , The Vera Wolstencroft Children

US Department of Justice Antitrust Case Brief - 01983-2225

Ovarian Tumour

Bladder Tumour

the little white book - brainstrust tumour support scotland.pdf · the little book white South East Scotland. Contents ... Welfare and legal advice 34 ... Carers trust 01896 752431

reer or fun. Call 01983 296981 DAVE B SOLO GUITARIST AND