here - Little Hearts Matter

2122 LHEARTS 20PP:NewsletterNo2 2009.qxd 05/11/2009 10:06 Page 14FeatureThe article below looks at medical transition for our youngmembers as they transfer from children’s hospitals to adultunits.Written bySuzie HutchinsonChief Executive, Little Hearts MatterMore and more of our young members are growingto the age where they will need to transfer fromchildren’s hospitals to adult units.This is all part of growing up and becomingindependent but leaving the doctors and nursesthat you have grown up with and learnt to trust, tomeet a new team, usually based in anotherhospital; can leave young LHM members and theirfamilies feeling nervous and unsure.Here we have tried to answer some of the mostcommonly asked questions.When will I be transferred to the adult hospital?Most young adults begin the transfer process oncethey reach 16, that does not mean that they need tomove over to the adult unit straight away. Someyoung people are happy to move straight awayothers would rather wait until they are nearer to 18when they have to move.Many of the cardiac units have a transferprocess - Transition Clinics. Consultants from boththe children’s and adult services meet the youngtransferring patient together, this can help withbuilding confidence that everyone knows abouteach child’s heart problem.Other units introduce their young patients to theirGUCH Nurse. This is a nurse who is very similar tothe liaison nurse. Their job will partly be to answerany questions about medical or lifestyle care and tooffer support to the patient and their family.The team have parallels with the same expertsin both children’s and adult services.Child Congenital TeamConsultant Congenital CardiologistConsultant Congenital Cardiac SurgeonCardiac Liaison SisterIntensive Cardiac Care TeamChildren’s Cardiac NursesChildren’s Cardiac Junior DoctorsEcho and ECG TechniciansWhich hospital will I be sent to?Each children’s hospital has a direct route to refereach patient to the adult congenital team linked tothe local children’s services. Many children’shospitals and adult teams work together meetingeach week to discuss patients. They are seen as aregion’s Congenital Heart Team. Most congenitalAdult Congenital TeamConsultant Congenital CardiologistConsultant Congenital Cardiac SurgeonGrown Up Congenital Heart NurseIntensive Cardiac Care TeamAdult Cardiac NursesAdult Cardiac Junior DoctorsEcho and ECG Techniciansheart surgery is done by the same surgeons thatoperate on children.Will my new doctor understand my heartoperation?Most of the adult congenital cardiac cardiologistshave been trained specifically in the care of youngpeople and adults with congenital heart problems.14Hello everyone,Matt Luck here, thought I would sharemy experience of medical transition toadult care with you.Now that I am 18 my care has beentransferred from Birmingham Children'sHospital to the Queen Elizabeth Hospital,with a Grown Up Congenital Heart Unit(GUCH). My new Cardiologist, Mr Clift,specialises in congenital heart conditionsand made me feel welcome as we chattedabout Hypoplastic Left Heart Syndrome.He knew all about my past medical historyand asked me how I was coping with dayto day living and if I had any concerns Iwanted to discuss. He explained to methat he would like me to have a number oftests, just so that he knew what was'normal' for me, these included cardiacMRI, 24hr tape and cardiac echo. I havereceived a copy of my ECG with advice tokeep it with me when I am out and about,just in case I am admitted to anotherhospital with chest pain. I also keep thenumber of the heart unit and nursespecialist in my phone.I will be seen in clinic once a year,which is the same as BCH unless mycondition changes. My medication -Warfarin and Lisinopril remains thesame. My transition to adult care hasbeen okay and I am positive about thefuture, I like my new Cardiologist andfeel confident with him.I hope you all have a good transition toadult services, I know that it will bedifferent for all of you, some of you willbe told when the transition will takeplace with little personal preparation(my experience) and others will have aphased transition with good preparationand forward planning.Good Luck!