dorset lupus group newsletter · well,following my dad’s diagnosis with lupus at the end of 2017...

www.lupusuk.org.uk/ www.dorsetlupus.com AUTUMN 2018

A word from your (new)Coordinator…

Helloeveryone

MynameisSeanMcFetrichandIhavejusttakenoverfromHelenBifieldastheDorsetRegionalCo-ordinator.

I think first of all we should all pay Helen a huge vote ofthanksforher�relessworkinthisroleoverthepastcoupleofyears.I’msureshewon’tmindmesayingthatshehasnotalwaysbeeninthebestofhealthherselfbuthasundertakenher rolewith commitment, enthusiasmandposi�vity. Shehasbeenastalwartmemberandini�atorofthelocalcoffeemorningsandsupported lotsofother fundraisingeventsaswell as a�ending the na�onal commi�ee mee�ngs inLondon a couple of �mes a year. I can see from the feweventsIhavea�endedthatsheisregardedbyallofyouwitha great deal of warmth and affec�on, and will be sorelymissedalthoughshewills�llhopetobea�endingasmanyevents,coffeemorningsandfundraisersaspossible.

I was diagnosed with the SLE version of Lupus just beforeChristmas last year. I hadbeen feeling�red for thewholeyear but had just put this down to generally ge�ng olderandbeingbusyrunningmyownbusiness! Istartedfeelingunwell inOctoberand fora coupleofweeks just thought IhadareallybadboutoffluwithD&V,nightsweatsandlossofappe�te.Itwasn’tun�lIgotthebu�erflyrashthat,a�era fewweeks,wewereable toget somespecificblood testdoneandfinallydiagnosetheillness. However,havingnowmet lotsofpeoplewithLupus,heardyourstoriesandreadmuch more about it, I feel as though I have been pre�ylucky. Myillnesswasdiagnosedrela�velyquickly-withinafewmonths -whilst I knowsomeof youhad towait yearsand,furthermore,manyofyoucontractedthediseasefroma rela�velyyoungagewhereashavingonly recentlypassed50IfeelagainIhavehaditlucky! Anyway,havingfeltreallylow,debilitatedandfairlyuselessIwonderedif icouldhelpotherswhoweresuffering. IranafewideaspastHelenbutthenwhen she felt shewanted to stand down as RegionalCo-ordinatorsheputmynameforwardandhereIam!

Lupus UK Reg Charity No. 1051610

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Regional Co-ordinators

Sean McFetrich

07815 581481

[email protected]

Rose Smeeton

01305 761454

[email protected]

Shirley Merrett

[email protected]

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


I am originally from Bournemouth so know the areareasonablywellbutonlymovedbackhere4 yearsagohavingmoved12�mesin16yearswhenintheRAF,andthenspent6yearsinNorthYorkshire. IammarriedtoLilibet,whowasastalwartlookinga�ermewhenIwasill,andhave4children -Dominicouryoungestat18 isabout to start Newcastle University where hewill joinJontywhoisabouttostarthislastyearatNorthumbriaUniversity. MydaughterAnnabel isamusicteacheratStamfordSchoolandmyeldestson,Alex,havingworkedintheMarke�ngDepartmentatTheOval(SurreyCricketClub) for a few years has just startedworking as SalesandMarke�ngManagerforme! Irunaspecialistcra�cider wholesale and distribu�on business, so in duecourseIthoughtacidertas�ngeveningtoraisemoneyforLupuswouldbeanobviousplacetostart!

Inthemean�meIamkeentocon�nuetheLupuscoffeemorningsbutunfortunatelyHaskinsareno longerableto offer us the private room free of charge as before.ThereforeIhavefoundanalterna�vevenueintheGlassRoomattheBrewhouseandKitchenPoole (3DearHay

Ln,PooleBH151NZ)withparking in theNCPopposite (andhopefully andabit easier toget to forsomeofourfriendsintheWesternsideofDorset),for11amonSat13thOctober.Youmayevenwantto stay on a�erwards for a drink and a bite to eat, so look forward tomee�ng asmany of you aspossiblethen.

Justareminder-OctoberisalsoLupusawarenessmonthandweareplanningtohavestandsattheBournemouthandChristchurchHospitalsasbefore-datesand�mesinthenewsle�er.

If you have any fundraising events taking place please let me know so we can publicise themaccordingly and likewise a�er an event please send any photos or ar�cles so we can get thosepublishedaswell.

[email protected]

Sean:)

Awordfromyour(previous)Coordinator…

HiAll,ihavebeenyourcoordinatorfor3yearsnowandduetohealthreasonsfeelits�meformetostepdown. Ihavethoroughlyenjoyedtheroleandmee�ng lotsofnewpeopleandhavemadenewfriends. A special thank you to Carol Brumpton, Rosemary Smeeton, Shirley Merre� and TamsinWilliamswhohaveallsupportedandencouragedme.IamveryhappytobehandingthereignsovertoSeanMcFetrichwhowillbeenthusias�candhaveafreshoutlookonhowtotakethegroupforward.Ilookforwardtoseeingyouatthenexteventon13thOctoberinPoole-seeencloseddetails.

WarmwishesHelenBifieldx


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Sun cream on prescription…

Suncreamhasbeenavailableonprescrip�onforlupussuffers,butthismaysoonchange.ThereisadrivebytheGovernmenttocutprescrip�oncostbywithdrawingmanyproductsthatcanbepurchasedoverthecounter.Prescrip�onsuncreamisthereforeonthehitlist. It isalreadyunderrestric�onwithveryli�leavailableonprescrip�onwithSunsensebeingtheonemostlyprescribed.Thisisavailableasa�ntedfaceand neck creamor as a general Factor 50 cream. It is not usually found on displaywith other brands,insteado�enbehindthecounterifstocked. Thismakeisexpensivebutitdoesgoalongwayandisnottoothick.Alsounlikemanybrands itdoeshaveausebydateusually inexcessof2years,manyotherbrandshaveashortselflife.SunsensecanbepurchasedonlineatSunsense.co.uk.Onprescrip�onitisavailablein100mlbo�le/tubeor500mlpumpcontainerwhichisbe�ervalueonNHSprescrip�on.

If youareobtaining sun creamonprescrip�onandwant this to con�nueperhaps youwant toexpressyourviewon this toLupusUKor lobbyyour localMP tohelp raise lupus awarenessand theneed forlupussufferstousesuncreamallyearround.

ShirleyMerre�

Keep in Touch…

If you know of anyone who is going through a bad �me, in hospital,strugglingathome,pleaseletmeknowsoIcansendthemacard,onbehalfof DLG, to let them know we are thinking of them. My email address [email protected]�velyphonemeon07815581481.

It'salwaysnicetoreceiveacard.

Medic Alert

MedicalAlertBandstailoredtoyourcondi�onandmedica�onarenowinaffordableformspricesstar�ngfrom£1.95

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

TheIDBandCompanyLimitedUnit9OakDrive

LionheartEnterpriseParkAlnwickNE662EU

UnitedKingdom

Tel:08009993669



My cycling challenge to raise money for Lupus UK…

MondayJanuary8th2018:Justanidea

Sevenfriends,303miles,DurhamtoLondon,24hours,onecricketgroundtoanother!

Thechallengewasset,backinJanuary,withexactlysevenmonthsun�lwetookflightfromthetopofthecountrytothecapital.Thetaskwassimple,therewaspointA,wherewewouldmeetearlyona sunny summer Sunday, and cycle 303 miles south, hopefullyarrivingatPointB,TheOvalcricketground,some24hourslater!

Whywouldweagreetosuchathing?Thegroupini�allystartedwithjustmyselfandtwoworkcolleaguesat Surrey County Cricket Club, both of whom were very keencyclists but who had had recent sufferings to comprehend - likemine with my father, when he was diagnosed with Lupus - andwanted tochallenge themselvesphysicallyandmentally.Acyclingenduranceeventseemedagoodfit,butwithourcareersincricket,it would always be difficult to take much �me off during thesummer,soa24hour�meframewasset.Finishingatouroffice,TheOval,seemedlogicalandafull24hourscyclingawaytookustoDurham’scricketground.Werecruitedfourmorefriendsandtheteamwascomplete.

My reasons for taking on the ride?Well,followingmyDad’s diagnosiswith Lupus at the end of 2017 Iwantedtoincreaseawarenessforthedisease,raisesomevaluablemoneyforthegreatworkthatLupusUKdoandtrytoputmyselfinhisposi�on,evenifforjustoneday.

Thetrainingwasbrutal!AssomeonewhohadnevercycledonaroadbikebeforethestartoftheyearIsoonrealiseditwasnotforme.ThiswascompoundedwhenIbrokeametatarsalinFebruary,rulingmeoutofcyclingforamonth.Theprospectofcomple�ngthechallengewasavery longwayoff.However,

withgenerousdona�onscon�nuingtobereceivedonmyJustGivingpage (h�ps://www.justgiving.com/fundraising/alex-mcfetrich ifanyonewoulds�llliketodonate!)therewasnowayIcoulddropout.

Noma�erhowlongatrainingridewouldbe-Istartedwith30miles,with the final prac�ce a 145miler - itwas always so insignificant incomparisontothe303wewouldbeundertaking.Iwaso�en(always!)the slowest in the group, forever losing them in the distance andsheepishlycatchingupastheywouldwaitbytheroadside.Buttherewasonlyoneop�onIcouldtakeandthatwastogiveitmybest,eventhough the night before the 8th I s�ll didn’t believe I would getanywherenearTheOval,letalonein24hours!

SundayJuly8th2018:ThejourneyThedayfinallyarrivedthoughandthesevenofusarrivedatDurham’scricketgroundfora9amleave.Everyonewassmilingandtherewasalotofnervousenergyflyingaroundwith familymembersandfriendstheretoseeusoff,butinsidewewereallpetrified.Interes�ngly,oneofthecyclistswearingaheartratemonitornotedtheirheartratewasatitshighestduringthesemomentscomparedtoanypointoftheride.


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Forthefirst50milesmyUncleJamesjoinedus,itwasgreattohavemyDad’sbrothersetoffwithusandhavemygrandmotherandauntyinoneofthesupportvehicles.Thatfirst50mileswasasgoodasitgotthough,anabsolutebreezedowntoThirskandIhadneverfeltbe�eronmytwowheels,just250togo.

Followingaboutofcramp,which I thought, (maybeevenhoped)couldbetheendofmyridebetweenmiles110to120,amuchwelcomedhalf-waystopatoneoftheriders’parentshouse increasedmoraleandwesoonrodeintothesecondhalf.

Asduskfell,arealsenseofpanicsetinamongstthegroup.Theroadsbecameincreasinglydangerouswithcarsand,more importantly,potholesbeginning toappearoutofnowhere,butwecon�nuedata fairlyferociouspace.AbeaconinthenightwasthearrivalofmyDadandbrotherJonty(whoalsoworkedatTheOval)bringingasmiletomyfacewiththeirjovialspirit.MyDadgotonhisbikeandleadusthroughthenight,a60smiles�ntwhichtookustodawn,withoutit,IamnotsureIwouldevenbewri�ngthispiece.

Thefinal100mileswean�cipatedtobeadoddle...ofcourse,itwasn’t.Breaksbecamemorefrequentanda lot longer than planned. Butwith each peddlewe got closer and therewas nowaywewouldn’t becyclingthroughthefinishlinewiththe‘magnificentseven’intact.

RidingthelasttenmilesthroughLondonwasexcrucia�nglypainful,myrightkneewasincompleteagonyandIwascyclingwithjustoneleg!Weknewagoodrecep�onwaswai�ngforusandthemagnitudeoftheeventstartedkickingin,oursunglassesnotjustmaskingthesunlightbutafewtearstoo.

EventuallywearrivedatTheOval,ali�leover25hoursa�erwestartedintheshadowsofLumleyCastle.RidingthroughtheHobbsGates’withsixfriends,whohadalsogonethroughsomuchinthatlastday,butintheirrecentlivestoo,wasarealhonourandalifelongmemoryhasbeenmade.

We couldn’t have done it without thesupport vehicles who were with us thewholewaybutequallyasimportantwerethe donators. Everyone has beenincredibly generous and I smashed myini�al fundraising target of £1500 raising£2700 to date! I hope I have made myfamily proud and anyone else flying theflagforLupus.

My bike hasn’t been touched since… butshe did me well! Thank you for all thesupport.

Wri�enbyAlexMcFetrich

October is Lupus Awareness Month…

Asyouareaware,OctoberisLupusAwarenessmonth.WewillbeholdingInforma�onStandsatBournemouthHospitalintheatriumareaonWednesday10thOctoberfrom10amto1pmChristchurchHospitalintheRheumatologywai�ngareaonWednesday17thOctoberfrom9.30amto1pm.PleasedropbyandhaveachatorifyouwouldliketogiveusahandateitherofthempleasecontactSean.


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Prescription Charges Coalition…

Thepe��onhandin…InJunecampaignersfromAsthmaUK,Crohn’sandColi�sUK,MotorNeuroneDiseaseAssocia�on,Na�onalRheumatoidArthri�sSocietyandParkinson’sUK,tookourpe��ontotheheartofGovernment.Signedbyalmost23,000supporters,ourpe��oncalledontheGovernmenttoscrapprescrip�onchargesforpeoplewithlong-termcondi�ons.BackinJulyweheardbackfromtheGovernmentaboutthepe��onwedeliveredtoDowningStreet.TheHealthMinister,LordO’Shaughnessy,saidinhisle�er‘TheGovernmenthasnoplansforareviewoftheprescrip�onchargingsysteminEngland.Asyouknow,almost90percentofprescrip�onitemsarefreeontheNHSinEngland,andabroadrangeofprescrip�onexemp�onsareinplace’.

Whatistheissue…?Thisyearmarksthe50thanniversaryoftheMedicalExemp�onListwhichisthelistthatdetermineswhoiseligibleforfreeprescrip�ons.Exceptforthewelcomedaddi�onofcancerin2009,itremainsunchanged.Thismeansthatseveralcondi�onsarenotincludedeitherbecausetheyhadnotyetbeendiscovered(suchasHIV)orthoseaffectedbyitweresadlynotexpectedtoliveintoadulthood.Itremainsgrosslyoutofdate.Weknowthatmanypeoplearestrugglingtokeepupwiththecostsofmedicinetheyneedtokeepthemwell.Toomanypeopleareforcedtomakeimpossiblechoicesbetweenhea�ngtheirhome,buyingfood,orpayingfortheirprescrip�ons.Weknowthatthishasanimpactonmedicaladherence,33%ofsurveyrespondentstoldusthattheyhavenotcollectedtheirprescrip�onduetocost.

Theeconomiccase…InMay2018,theYorkHealthEconomicsConsor�umpublishednewfindingsthatshowedthatscrappingprescrip�onchargesforjusttwolong-termcondi�ons(IBDandParkinson’s)wouldsavetheNHSover£20millionayear.Savingscamefrom:*9%fewerA&EvisitsforpeoplewithParkinson’s*11.4%lesshospitaladmissionsforpeoplewithParkinson’s*7,149lessflaresforIBD*3,887fewerGPvisitsforpeoplewithCrohn’sDiseaseThesefindingsshowuswhatwealreadysuspected,scrappingprescrip�onchargeswouldinfactsaveNHSEnglandmoney.Ata�mewhenbudgetsare�ght,theGovernmentshouldlistentoevidencethatshowstheeconomicbenefitsofendingprescrip�onchargesforlong-termcondi�ons.

Whatsnext…?TheGovernment’sresponseisdisappoin�ng,butwearebolsteredbothbynewevidenceandyoursupport-thousandsofuswillkeeppressureondecisionmakerstorevisitprescrip�onchargeexemp�ons.Asacoali�onweareworkinghardtokeepprescrip�onchargesonthepublicagenda.

Supportourcampaign…Ourcampaigndoesn’tendwiththepe��onhandin.Youcanhelpusbymee�ngwithyourlocalMPtodiscusshowprescrip�onchargesaffectpeoplewithlong-termcondi�ons.Downloadourlobbypack-acompleteguidewithusefulinforma�onand�psonmee�ngwithyourMP.h�p://www.prescrip�onchargescoali�on.org.uk/uploads/1/2/7/5/12754304/prescrip�on_charges_lobby_pack_2018.pdfYoucanalsokeepuptodatewithallofourlatestcampaignworkbysigninguptoourmailinglist-detailsonthewebsite.


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Venue:

Interactive Lupus Education

Morning

to confirm you place on 01202 705302

Speakers


Fundraising…

A huge thank you to the following people for all their hard work raising money for Lupus.

Sally and Brian Adams from Southbourne, raised £75.12 with a coffee morning in July.

Coffee & Chat…

TherewillbeacoffeeandchatintheGlassRoomattheBrewhouseandKitchen,PoolewithparkingintheNCPopposite(andhopefullyandabiteasiertogettoforsomeofourfriendsintheWesternsideofDorset),for11amononSaturday13thOctoberat11am.Therewillbea‘DORSETLUPUSGROUP’signonthetableandwewillhavesomeLupusinforma�onavailable.Lookingforwardtoseeingyou.

Brewhouse&Kitchenaddress:3DearHayLn,PooleBH151NZ

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

October-LUPUSAWARENESSMONTH

FriSept28th-Interac�veLupusEduca�onMorning-TheParkinSuite,ChristchurchHospital-10-12pm

WedOct10th-BournemouthHospitalInforma�onStand-Bournemouth-10-1pm

SatOct13th-CoffeeandChat-Glass,RoomatBrewhouse&Kitchen,Poole-11am

WedOct17th-ChristchurchHospitalInforma�onStand-ChristchurchHospital-9.30-1pm


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dorset lupus group newsletter · well,following my dad’s diagnosis with lupus at the end of 2017...

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