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 [email protected]

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

[email protected]

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

[email protected]

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

[email protected]

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


[email protected]


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



Aberdeen and Highlands Coffee Mornings and Networking Groups

CLANCancerSupport

01224 647000 CLANHouse,120WestburnRoad,AberdeenAB25 2QA

[email protected]

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

[email protected]

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 [email protected]

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

[email protected]

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

[email protected]

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

Thesemonthlymeetings,heldatCLANhouse,areopentoanyoneaffectedbyabraintumour.Theyareachanceforpatients,familiesandfriendstogainpeersupportinasafeandwelcomingenvironment.

Inverness Brain Tumour Network Group

Maggie’sHighlands


[email protected]


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



Highlands Brain Injury Support Groups

HeadwayHighland

07767 416006 VariouslocationsintheHighlands

[email protected]

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

[email protected]

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

Thisgroupoffersfriendshipandsupporttowomenaffectedbycancer.TheGroupmeetsonthesecondTuesdayofthemonthat7.30pm.

Ballater Support Group

CLANCancerSupport

01339 756318 VictoriaRd,BallaterAB35 5QX

[email protected]

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

Thissupportgroupsofferasocial,friendlyenvironmenttogainpeersupport.Thegroupmeetsat4pmonthelastWednesdayofthemonthatBallaterGolfClub.



‘Peedie Blether’ Orkney Support Group

CLANCancerSupport

01856 873393 CLANCancerSupport,30VictoriaStreet,KirkwallKW15 1DN

[email protected]

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

[email protected]

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

[email protected]

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

[email protected]

www.orkneyyoungcarers.org/whattheoycsoffers.html#top

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

Highland Carer Support Groups

ConnectingCarers 01463 723560 GlenOrrinHouse,HighStreet,DingwallIV15 9TF

[email protected]

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

[email protected]

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

[email protected]

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


[email protected]

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

[email protected]

www.children1st.org.uk

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

26 Supportforchildren Supportforchildren 27


Aberdeen Kids’ Days

Maggie’sAberdeen


[email protected]


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

[email protected]

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


www.brainandspine.org.uk/helpline

Thisfreeandconfidentialhelplineallowsyoutocontactanursetodiscussyourbraintumourdiagnosisandanyqueriesyoumayhave.Thehelplineisopeneveryweekdaymorningbetween9amand2pmfromMondaytoThursdayand9amto1pmonFridays.

30 Supportlines Supportlines 31


Brain Tumour Action Telephone Helpline

BrainTumourAction

0131 466 3116 BrainTumourAction,25AnnStreet,EdinburghEH4 1PL

[email protected]

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



www.macmillan.org.uk

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

CLIC Sargent Grant for Young People

CLICSargent 0300 330 0803 [email protected]

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


[email protected]


Thiscentreoffersavarietyoftherapiesandclasseswhicharespecificallydesignedforpeoplelivingwithcancer.Thisincludesanexpressiveartclass,creativewritingsession,arelaxationandvisualisationgroupandayogaclassforbeginners.

Aberdeen and Highlands Complementary Therapies

CLANCancerSupport


[email protected]

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


[email protected]

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

[email protected]

www.calumscabin.com

AcountrysideretreatontheIslandofButewherefamilieswithachildwithcancercancomeandstay.Thecharityalsohelpswithtravelcoststotheisland.

The Kieran Mess Luxury Holiday Home

TheKieranMessFoundation

TheKieranMessFoundation,4SwintonPlace,TheFernsLawthorn,Irvine,AyrshireKA11 2EG

[email protected]

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

[email protected]

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


[email protected]


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

[email protected]

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

[email protected]

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

[email protected]

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

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

Inverness Day Therapy


[email protected]

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


[email protected]

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


[email protected]


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

Friendship After Bereavement Group

CLANCancerSupport


[email protected]

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


[email protected]


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

[email protected]

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,[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


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

on

of inform

ation

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.

Notes

64 Notes

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 [email protected]

www.brainstrust.org.uk

The little white book – Glasgow, edition 1,published by brainstrust January 2017, due forreview January 2018.

© brainstrust 2016.Registered charitable trust, brainstrust is a registered charityin England and Wales (1114634), and Scotland (SC044642)

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