ME Tl OURWEEKLYZOOM MEINGs ON A TUESDAY AThRACT APPROX 12 PEOPLE PER WEEK. AND WE HAD 3 GUESTS DURING THE YEAR. THEYWERETHE PCC (PATIENT AND CLIENTCOUNCIL) DR INGRID HOERWITZERAND PROFESSOR STONE. THESE SESSIONSWERE AThENDED BY APPROX 30 PEOPLEWHO LISTENED TO EXCELLENT DISCUSSIONS AND THE FEEDBACKWAS MORETHAN POSITIVE. OUR DROP-INS CONTINUED AT LEAST 1 PER MONTH AT DIFFERENT LOCATIONS SUCH AS BALLYMENA. BELFAST. LISBURN, MAGHERAFELT. NEwfowNARDS AND PORTADOWN. AT LEAST 15 PEOPLE WERE IN AENDANCE PER SESSION. OUR YOUNG PEOPLES &YOUNG ADULTS ZOOM CALLS MONcE A FORTNIGHT AND ATCHRISTMAS WENT BOWLING TOGHER. THEf ALSO DURING THE YEARWITH AN ARTISTWHO ALSO HAS FND AND PRODUCED A VIDEO EXPLAINING ABOUTTHEIR CONDITION AND HOWTHEYCOPEDWITH IT. THEYWERE ALSO PARTOFA GROUP AT STORMONTWHEN A DELEGATION OFYOUNG PEOPLE SPOKE TO MLA'SABOUTTHEIR CONDITION AND THEIR EXPERIENCEWITH THE HEALTH SERVICE. THEY EXPLAINEDTHAT NO PATHWAY FOR FND PATIENTSWAS AVAILABLE AND THATTHEY HAVE BEEN TREATED POORLY BY HEALTH PROFESSIONALS AS AWHOLE. THEY EMPHASISED THE NEED FOR BEER PAEDIATRIC SERVICES FOR YOUNG FND PATIENTS. FEEDBACK FROM ALL THE ABOVEWAS MORETHAN POSITIVE AND WE ARE ESPECIALLY DELIGHTED ABOUTTHE YOUNG PEOPLEASTHEY SEEM TO HAVE BONDED OVER THEIR SHARED CONDITION. THEY HAVEALSO PROVED TO BE GREAT FUNDRAISERS AND HAVE RAISED SEVERAL THOUSAND POUNDS FOR FND MArrERS
OUR COUNSELLING SERVICE IS GOINGWELL. THE 4 COUNSELLORS SPEAKTO APPROX 10 CLIENTS PERWEEK. SINCE WE BEGAN OFFERING FREE COUNSELLING FROM FNDTRAINED COUNSELLORS. TO DATE WE HAVE RECEIVED OVER 170 APPLICATIONS. SOME OFTHESE CLIENTS HAVE BEEN REFERRED TO US BY HEALTH PROFESSIONALS BUT UNFORTUNATELYWE HAVE BEEN UNABLETO SECURE FUNDING FROM THE DEFTOF HEALTH. FORTUNATELYWE HAVE SECURED £20,000 FROM THE NATIONAL LOThERY. ASTHEYEARLY COUNSELLING COST IS WORKING OUT ABOUT£23.000. WE WERE INFORMED BY PROFESSOR STONETHAT FND mAERs NI ISTHEONLY FND CHARITYTO PROVIDETHISVALUABLEAND MUCH NEEDED SERVICE. TRUSIEE.MEETING PRO.QRAMME TWOTRUSTEES HAVE BEEN INVOLVED IN QUITE A FEW NWORK MEINGs AND ARE PART OFTHE ALL PARfi GROUP ON NEUROLOGY AT STORMONT. WEWERE ABLE TO EXPLAIN THAT NO PATHWAY ISAVAILABLE FOR FND PATIENTS AND THATTHEY FELT THEY HAD BEEN DISMISSED BY MOST HEALTH PROFESSIONALS. THISWASTAKEN ON BOARD BYTHE MLA'S. WE ARE MEMBERS OF NINCA (NORTHERN IRELAND NEUROLOGICALCHARITIES ALLIANCE)ANDAThEND mEINGsONcEA MONTH. MEMBERS INCLUDE MS SOCIEtY. STROKE SOCIEfY, BRAIN INJURY AND PARKINSONS, ALONG SIDE OTHER NEUROLOGICAL CHARITIES. THE ALLIANCE FOCUSES ON THE HEALTHCARE SYSTEM AND HOW BROKEN IT IS. OUR INPUT HAS BEEN VITAL WITH THE NEUROLOGY REVIEW AS ALONG WITH DR NIGEL LyLE WE HAVE BEEN INSTRUMENTAL IN PLANNING A PATHWAY FOR FND PATIENTS. A PUBLIC CONSULTATION HAS BEEN PLANNED AND FOR THE FIRSTTIME EVER FND HAS BEEN MENTIONED AND A PATHWAYWILL BE PUT IN PLACE WHEN MONEY FROM THE DEPTOF HEALTH BECOMESAVAILABLE. JEANErrE ISA MEMBER OFTHE FND SOCIETYWHICH INCLUDES PROFESSIONALS FROM A NUMBER OF COUNTRIES IN THE WORLD. THEY HAVE REGULAR MEETINGS AND PRESENTATIONS FROM WORLD FND SPECIALISTS. WE ARE MEMBERS OFTHE NEUROALLIANCE CO-PRODUCTION WORKING GROUP AND INSTRUMENTAL INTHE'BACKTHE 1 IN 6CAMPAIGN.
DISCUSSIONS HAVE BEEN TAKING PLACE BYTHETRUSTEESABOUT PLANS FOR GOING FORWARD. WE HAVE DECIDED TO HOLD ANOTHER CONFERENCE WITH THE EMPHASIS ON ENCOURAGING HEALTHCARE PROFESSIONALS TOAThEND. AS FND IS 0EN MISUNDERSTOOD. SUGGESTIONS FOR SPEAKERSWERE PUT FORWARD AND WETENTATIVELY SUGGESTED IFWE COULD A PAEDIATRICIAN AS THE MAIN SPEAKER AND POSSIBLYSOMEONE FROM SPEECH AND LANGUAGE AND A PHYSIOTHERAPISTWOULD BE IDEAL. A PROPOSAL FOR PUThING TOGHERA PLAN TO FORWARD TOTHE DEPTOF HEALTH FOR FUNDING IS IN THE EARLYSTAGES. THISWOULD INVOLVEASKING FOR PARTICIPANTS WHO HAVE AThENDED OUR COUNSELLING SERVICEAND LIVING IN THE BELFASTTRUST AREA TO GIVE CONSENTTOACCESSTHEIR MEDICAL RECORDS BY A HOSPITALCONSULTANT AND TO PRESENTTO THE DEPTOF HEALTH AS EVIDENCE THAT FND MAThERS NI OFFER A SERVICETHAT MAKES A DIFFERENCETOTHE LIVES OF THOSE LIVING WITH FND. WE RECEIVED SEVERAL GRANTS DURING THEYEAR INCLUDING ONE FROM THE NATIONAL LOERy FOR £20,OOOTO BE USED SPECIFICALLY FOR COUNSELLING. WE HAVE PARTNEREDWITH ENTHUSEWHICH IS A FUNDRAISING PLATFORM AND THIS HAS CREATED SOME FUNDING AND THE NEWYEARWILLSEE USTRYING TO OBTAIN MORE FUNDINGAND GRANTS.