www.lupusuk.org.uk/ www.dorsetlupus.com SPRING 2017

A word from your Coordinator…

WelcometothisSpringedi2onoftheDorsetLupusGroupNewsle:er–It’shardtobelieveSpringishere,butseeingtheflowersbeginningtocomeup,bringsushopeforbe:erweather.

Howareyou?HastherebeenanychangesinyourGPsurgery?We’dliketoknowiftheNHSTransforma2onProjectPlansforDorsetareaffec2ngyourarea?Pleasekeepusinformed.

Somegoodnews–TheHamprestonTeasarewellunderwayandhavealreadyraised£253forjusttwoaPernoonsinFebruary.Pleaseseefurtherinthenewsle:erforfuturedatesforthisyear.

ShirleyMerre:andRosemarySmeetonarehopingtore-establishtalkstoourlocalhealthcareprofessionals,HeadOfficehaveequippedthemwith20copiesoftheLupusandDiagnosisbookstohandout.

Whatdoyoudowithyouroldcopyof‘NewsandViews’?WhynotdropitoffatyourlocalGPprac2ce–notonlyisitinforma2vebutitalsoisasimplewayofraisingawarenessofLupus.

IwishyouallasuperSpringandSummerandlookforwardtoseeingyouatanevent.WeareofftoNewYorkCityinSeptemberandI’mhopingtomeetupwiththeNYClocallupusgroup….ImayhavesomenewstoreportintheAutumn.RememberIamalwaysheretohelpinanywayIcan.Keepwell.

Helen xx

Lupus UK Reg Charity No. 1051610 National Office: St James House, Eastern Road, Romford, Essex RM1 3NH

Tel: 01708 731251 Fax: 01708 731252 �1

Regional Co-ordinators

Helen Bifield

01202 696299

helen.bifield@dorsetlupus.com

Rose Smeeton

01305 761454

rosemary.smeeton2@btinternet.com

Shirley Merrett

spmerrett@ntlworld.com

Contacts

Helen B 01202 696299

Tamsin W 01202 041149

Jean Durrant 01258 860565

Rose S 01305 761454

Patrons

Dr Neil Hopkinson DM FRCP

Christopher Chope OBE MP & Christo Chope

DORSET LUPUS GROUP NEWSLETTER

check out our website ~ join our Facebook page and get involved

www.lupusuk.org.uk/ www.dorsetlupus.com SPRING 2017

Report from National Council Meeting - Helen Bifield

ThiswasmythirdNa2onalCouncilmee2nginLondon,heldattheGrangeCityHotelonMarch11th.

Therewere19membersatthemee2ngwhichconsistedofCEOChrisMakerandPaulHowardfromHeadOffice,KevinWestonChairman,TinaStempTreasurer,DavidHopkinsSecretary,YvonneNortonandJanRobertsTrustees,LizValeCo-Optedtrusteeandrepresenta2vesfromDevonandCornwall,Hampshire,East,WestandSouthLondon,SouthandEastScotland,EastMidlands,Strathclyde,WestMidlands,North

WalesandusDorset😊 .

Itwasagooddaywithalotdiscussed,somediscouragingreportsoflackofa:endanceateventswerenotedfromseveralCoun2esbutfrommostthereisalotofposi2vework,supportandfundraisingbeingdonebyLupusmembersandtheirfamiliesacrossBritain.

Therearetobechangesinthewaytheboardoftrusteesareformed–currentlytheboardismadeupof8Lupusmembersandgroupchairpersonswith1co-optedperson.FromMay6th2017attheAGMinWinchester,anewplanwillbeadopted-therewillbeamaximumof8Lupusmemberswithanaddi2onal2furthertrusteeswithspecialistskills(thesecouldbeConsultants,GP,medicalprofessionalsetc)these10peoplewillservefora3yearperiod.Inaddi2ontherewillbe2Co-optedtrusteesfor‘specificpurposes’whowillservefora1yearperiod.Theideaistoopenupthetrusteecommi:eetobe:erdealwithallaspectsofLupusUK.

HeadOfficeconfirmedtheyhaveagreedagrantof£246kforaSpecialistLupusNurseBand6(5yearperiod)atQueenElizabethHospital,Birmingham.

YvonneNortonislookingtostanddownfromrepresen2ngLupusUKatLupusEurope.

Thedayfinishedwiththanksfromthetrusteestoallcoordinatorsandchairsfortheirhardwork.

NGS Manor Farm at Hampreston

NGS Manor Farm Teas Fundraiser, Hampreston

LupusGroupmembersservetheteasandcakesandthefundsfromtherefreshmentsgotothe

workofLupusUK.Ifyouwouldliketohelp,pleasecontactDebbie

Steel01202877390

Sunday11June 1-5pm

Sunday30July 1-5pm

Wednesday3August 1-5pm

Sunday13August 1-5pm

Lupus UK Reg Charity No. 1051610 National Office: St James House, Eastern Road, Romford, Essex RM1 3NH

Tel: 01708 731251 Fax: 01708 731252 �2

www.lupusuk.org.uk/ www.dorsetlupus.com SPRING 2017

‘Boutique In a Bus’ Fundraiser - Saturday 27th May 2-4.30pm

ChrisMcKennahasorganisedthisfundraiserinPuddletown,Dorchester.

Thebusisfilledwithlot'soflovelyclothes,bagsandaccessoriesforwomen.Allitemsonthebusarepricedunder£50.

TherewillbeTea/Coffeeandcakesontheday&araffle.AllareWelcome.

Thebuswillbeat:2KindleCoHage,TheOldCoalyard,StylesLane,Puddletown,NrDorchester,DT28SJ

Lupus UK Reg Charity No. 1051610 National Office: St James House, Eastern Road, Romford, Essex RM1 3NH

Tel: 01708 731251 Fax: 01708 731252 �3

www.lupusuk.org.uk/ www.dorsetlupus.com SPRING 2017

Do’s & Don’ts of Living with Sjögren’s and Raynaud’s

Twooverlappingcondi2onsknowntomanywithLupusareSjögren’ssyndromeandRaynaud’sdisease,alsoknownasRaynaudsphenomenon.Herearesomeoftheprac2caldo’sanddon'tstolivingwiththesediseases.

Sjögren’ssyndromeaffectsthebody’sabilitytoproducemoistureintheglandsoftheeyes,nose,mouthandvagina.Althoughthehallmarksymptomsaredryeyesandmouth.Sjögren’smayalsocausedysfunc2onofotherorganssuchasthekidneys,gastrointes2nalsystem,bloodvessels,lungs,liver,pancreasandthecentralnervoussystem.Pa2entsmayalsoexperienceextremefa2gueandjointpainandhaveahigherriskofdevelopinglymphoma.Sjögren’ssyndromeisclassifiedasprimarywhenitoccursalone,orsecondarywhenanotherconnec2ve2ssuediseaseispresent.Prescrip2onmedicinesfordryeyesandmouthareavailable,asarevariousoverthecounterlubrica2ngproducts.

• Dokeephighhumidityworkandhomeenvironments

• Dobreathethroughyournosenotyourmouth

• Dobeawarethatmanyprescribedmedica2onscausedrymouth(xerostomia)

• Dopayclosea:en2ontothehealthofyourteethandgums

• Don'tconsumespicyfoodsoracidicjuices,fruitsorvegetableswhichcanirritatemouth2ssue

• Don’teathardcrunchyfoodsthatcanirritateortearmouth2ssue

• Don’tsmokeorspend2meinloca2onswhereothersaresmoking

• Don’tusetartar-controltoothpasteorteethwhiteningproducts,whichcanirritatemouth2ssue

• Don’toverusealcohol(includingwine)ormouthwashesthatcontainalcohol,asthesecandrythemouthfurther

Raynauds’sdiseasecausesnarrowingofthebloodvessels,whichmostcommonlyaffectsthefingersandtoes.Whenbloodcan’tgettothesurfaceoftheskin,theaffectedareasturnwhiteandblue.Whenthebloodflowreturns,theskinturnsredandthrobsor2ngles.Inseverecases,lossofbloodflowcancausesoresor2ssuedeath.Prescrip2onmedicinescanhelpkeepthebloodvesselsopen,butthebesttreatmentistoavoidthecauseofthea:acks.

• Doavoidabruptchangesintemperature,especiallygoingfromwarmairtoaircondi2oning

• Dosoakyourhandsorfeetinwarmwateratthefirstsignsofana:ack

• Dousemi:enswhentakinganythingoutofthefreezer

Lupus UK Reg Charity No. 1051610 National Office: St James House, Eastern Road, Romford, Essex RM1 3NH

Tel: 01708 731251 Fax: 01708 731252 �4

www.lupusuk.org.uk/ www.dorsetlupus.com SPRING 2017

• Doavoidexcessstress

• Doseeyourdoctorifyoursymptomsbecomeworseorifyouno2ceanysoresonyourfingersortoes

• Don’tsmokeorspend2meinloca2onswhereothersaresmoking

• Don’tusevibra2ngtools,suchasanelectrichandmixerorpowertools

• Don’tgooutsideincoldweatherwithoutacoat,hat,warmsocksandmi:ens(notgloveswhichallowmorecoldairtogetbetweenthefingers)

Source:LupusFounda2onofAmericaLupusNowMagazine(www.lupus.org)

Lupus Events in Hampshire

Hampshire Lupus Information Day Saturday 6 May 1:30pm

At The Guildhall Winchester SO23 9GH

Talks by

Professor Chris Edwards Consultant in Rheumatology – Southampton

Dr Neil Buchanan, Consultant in Rheumatology – Royal County Hospital, Winchester

Colin Beaver – Matron for Rheumatology, Portsmouth

Carol Brumpton, Lupus Nurse Specialist – Christchurch Hospital

For further details and to book a free ticket email : info@lupusuk.org.uk or phone Paul Howard on 01708 731251

-----------------------------------------------------------------------

It would be lovely if we could support Carol our Specialist Nurse from Christchurch by attending this event.

Lupus UK Reg Charity No. 1051610 National Office: St James House, Eastern Road, Romford, Essex RM1 3NH

Tel: 01708 731251 Fax: 01708 731252 �5

www.lupusuk.org.uk/ www.dorsetlupus.com SPRING 2017

Update from the team at Christchurch Rheumatology

WearedelightedtoreportthattheimprovementstotheChristchurchHospitalsitearecon2nuingatpace,withthelovelynewrecep2onareaopeninganyday.Whiletherewills2llbesomeongoingimprovementstocome,theout-pa2entrefurbishmentisnowcomplete,withabrandnewX-rayDepartmentandredevelopedwai2ngarea.

ThesedevelopmentsandchangesreflecttheongoingcommitmentoftheRoyalBournemouthandChristchurchHospitalsNHSFounda2onTrusttoworkinpartnershipwithpa2entsandinvestinthefutureofhealthcareinDorset.

Undoubtedly,localNHSserviceswillcon2nuetogothroughaperiodofchangeasservicesareredesignedtomeettheneedsofthelocalpopula2on.However,ourfocusisourabsolutecommitmenttodeliveringhighqualitycareforourpa2entsandwearealwayskeentohearourpa2ents’viewsandworkcloselywiththemtomakeserviceimprovements.

AlthoughwelookaPeradultpa2entswithLupusofallagesandgenders,IthoughtIwouldtaketheopportunitytodiscussthelatestEuropeanguidelinesforwomen’shealthpublishedbytheEuropeanLeagueAgainstRheuma2sm(EULAR)inMarch2017and,inpar2cular,howtheyrelatetopregnancyplanning.

Thesenewguidelinesarecomprehensiveandhavebeendevelopedusinganevidencebasedapproach.

AtChristchurchweplacegreatemphasisondiscussingfamilyplanningandensuringourpa2entshaveaccesstoinforma2onpriortoconcep2on.Thisemphasisonhighqualitycarecon2nuesthroughoutpregnancyandaPerdelivery.

Encouragingly,theguidelinessaythatmostwomencanhavesuccessfulpregnancies,butencouragesclinicianstopromotethehealthofmumandbaby.Concernscentreonthepoten2alimpactofanypregnancyonmaternaldisease,theeffectofLupusdiseaseac2vityontheunbornbabyandthesafetyofmedicinesduringpregnancyandbreastfeeding.

Duringpregnancy,womenwithLupusshouldhaveextramonitoringintheformofanindividualisedplanmadebytheObstetricTeam.LUPUSUKhasanexcellentguidetopregnancythatpa2entsmayalsofindusefulontheirwebsitewww.lupusuk.org.uk.

Wewouldencourageyoutodiscussyourchoicesregardingcontracep2onandanyfuturepregnancyplanswithyourclinicianwhereverpossible.

Weareplanninganinterac2vemorninglaterintheyearandwilldiscussfurtherissuesofinterestforallourpa2entswiththeusualinformallectureandques2onandanswerformat.

Wehopethatyouwillbeabletojoinusforthiseventandwewillprovidefurtherdetailsassoonaspossible.

CarolBrumpton-LupusNurseSpecialist

Lupus UK Reg Charity No. 1051610 National Office: St James House, Eastern Road, Romford, Essex RM1 3NH

Tel: 01708 731251 Fax: 01708 731252 �6

www.lupusuk.org.uk/ www.dorsetlupus.com SPRING 2017

Medic Alert

MedicalAlertBandstailoredtoyourcondi2onandmedica2onarenowinaffordableformspricesstar2ngfrom£1.95

h:p://www.theidbandco.com/Rubber-Medical-Bracelets

TheIDBandCompanyLimited Unit9OakDrive

LionheartEnterpriseParkAlnwickNE662EU

UnitedKingdom

Tel:08009993669

Foot Care - Shirley Merritt

Followingresearchundertakentolookatproblemslupussuffersexperiencewiththeirfeet,itis

becomingmorerou2netobeofferedreferraltochiropodist/podiatrist.

Thishasbeenveryhelpfulforme,havingbeenreferredbythespecialistnurse.Thewaittobeseenwasnotlongandthetreatmentandadvicereceivedasaresulthasbeenbeneficialbothtomyfootcomfort

andavoidanceoffurtherinfec2on.Myselfandotherslocallytookpartinresearchtodeterminetheeffectsof

lupusonthefeet.Thisisagreatexampleofhowresearchcanhaveaposi2veoutcometoimprovethepa2entcareoffered.

Calling all Ebay Sellers!

£ DoyousellonEBAY?£

LupusUKhaveasitetobuyorsellyouritemswhereapercentageoftheproceedscanbedonatedtotheworkofLupusUK–copythelinks

h:p://www.lupusuk.org.uk/sell-for-lupus-uk-on-ebay/

h:p://www.ebay.co.uk/egw/ebay-for-charity/charity-profile/?np_id=193747

Lupus UK Reg Charity No. 1051610 National Office: St James House, Eastern Road, Romford, Essex RM1 3NH

Tel: 01708 731251 Fax: 01708 731252 �7

www.lupusuk.org.uk/ www.dorsetlupus.com SPRING 2017

May 10th is World Lupus Day

Thereisnoboundarytotheimpactoflupus.Lupusisaglobalhealthproblemthataffectspeopleofallna2onali2es,races,ethnici2es,gendersandages.Lupuscanaffectanypartofthebodyinanywayatany2me,oPenwithunpredictableandlife-changingresults.Whilelupusknowsnoboundaries,knowingallyoucanaboutlupuscanhelpcontrolitsimpact.

About World Lupus DayWorldLupusDayissponsoredbytheWorldLupusFedera2on,acoali2onoflupuspa2entorganisa2onsfromaroundtheworld,unitedtoimprovethequalityoflifeforpeopleaffectedbylupus.Throughcoordinatedeffortsofitsglobalaffiliates,theWorldLupusFedera2onworkstocreategreaterawarenessandunderstandingoflupus,provideeduca2onandservicestopeoplelivingwiththedisease,andadvocateontheirbehalf.Learnmoreatworldlupusfedera2on.org. WorldLupusDayservestocalla:en2ontotheimpactthatlupushasonpeoplearoundtheworld.Theannualobservancefocusesontheneedforimprovedpa2enthealthcareservices,increasedresearchintothecausesofandcureforlupus,earlierdiagnosisandtreatmentoflupus,andbe:erepidemiologicaldataonlupusglobally.WorldLupusDayservestorallylupusorganisa2onsandpeopleaffectedbythediseasearoundtheworldforacommonpurposeofbringinggreatera:en2onandresourcestoeffortstoendthesufferingcausedbythisdisablingandpoten2allyfatalautoimmunedisease.

About World Lupus Day and DorsetEveryyearwetrytohaveaLupusInforma2onStandinacoupleoftheDorsethospitalsonMay10–thisyearweareplanningtobeatDorchesterCountyHospitalandBournemouthGeneralHospital.

Ifyouareabletohelponthatday–pleasecontactHelenBifield01202696299(forBournmeouth)orRosemarySmeeton01305761454(forDorchester)Manythanks.

Dates for your diary - cut off and stick on your fridge

SatApril1st-CoffeeMorningatHaskinsGardenCentre,NrFerndownBH229DG-11-12.30pm

SatMay6th-HampshireLupusInforma2onDayatTheguildhall,Winchester1.30pm

WedMay10th-StandsatBournemouthHospital&DorchesterHospital-10-3pm

SatMay27th-Bou2queinaBusat2KindleCo:age,Puddletown,NrDorchester,DT28SJ-2-4.30pm

SunJune11th-ManorFarmOpenGardens-Hampreston-1-5pm

SatJune24th-CoffeeMorningatHaskinsGardenCentre,NrFerndownBH229DG-11-12.30pm

SunJuly30th-ManorFarmOpenGardens-Hampreston-1-5pm

Wed3rdAug-ManorFarmOpenGardens-Hampreston-1-5pm

SunAug13th-ManorFarmOpenGardens-Hampreston-1-5pmLupus UK Reg Charity No. 1051610 National Office: St James House, Eastern Road, Romford, Essex RM1 3NH

Tel: 01708 731251 Fax: 01708 731252 �8

www.lupusuk.org.uk/ www.dorsetlupus.com SPRING 2017

Lupus UK Reg Charity No. 1051610 National Office: St James House, Eastern Road, Romford, Essex RM1 3NH

Tel: 01708 731251 Fax: 01708 731252 �9