North Middlesex University Hospital NHS Trust Transition for Sickle Cell Disease and Thalassaemia Who are we? Dr Olu Wilkey Dr Marilyn Roberts-Harewood Dr Anne Yardumian Linda Keir Dr Bethanne Willingham Consultant Paediatrician Consultant Paediatric Haematologist Consultant Haematologist Childrens Specialist Nurse in Haemaglobinopathy Transition co-ordinator Clinical Psychologist What do we do? As well as looking after all your medical needs our job is also to help you get ready to be more independent in managing your sickle cell, making it easier when the time comes for you to be seen in the adult clinics and wards. This process is called Transition. Please see our accompanying leaflet Transition: Getting ready to move on to adult health services for more information about transition in general. How will Transition work for SCD/thalassaemia? Phase One Transition Workshop is a beginner’s induction for our service users aged 1214. This is a forum allowing you to meet other children and teens who suffer from sickle cell and thalassaemia. We cover lots of topics related to understanding your condition, general health topics, and give time for everyone to get to know each other and share experiences, as it can be really useful to learn more about how others cope with their condition. Whether you attend the workshop or not, the next step is to start reviewing your Transition Health Plan, which sets our all the things it would be useful for you to understand and be confident doing on the path to transitioning to adult services. We will look at this several times before you make the transition and come up with a plan together to help you with bits you are struggling with. We will invite you to attend the adolescent haematology clinic which is held on the first Wednesday afternoon of the month every two months, with later appointment times that means you can come after school and be seen with other people your age (away from the babies!). Phase Two of transition happens from around 15yrs of age. We understand that school pressures at this time are paramount, and you may not need to attend clinic so often. During this time you will get to know Dr Roberts-Harewood and Dr Yardumian, who will continue to be your doctors when you are seen in the Young Adult Clinic. From age 15 young people are invited into their clinic appointment without their parents for the first part of the appointment to allow you to ask any questions you want to in privacy, and to encourage confidence in talking to doctors alone. Don’t worry, your parents will be able to join you after the first five minutes! You will be invited to join a tour of the adult services, A&E Dept, admission ward, day unit, clinic area, pharmacy and blood test department, and meet a young person who has already made the transition to adult services to answer any questions you might have. We will review your Transition Health Plan and help with any areas that you may be struggling with. Phase Three of transition occurs from age 16-18. Once aged over 16, young people will attend their clinic appointments at Dr Roberts-Harewood’s Young Adult Clinic which is held in the Main Outpatient department of the hospital on the first Tuesday afternoon of the month. You will have already met Dr Roberts-Harewood in Phase Two, and all of your medical notes from childhood will be available. We will provide you with a summary of all your past medical history and medications which you should keep safe and bring with you whenever you see a doctor. We will continue to work on your Transition Health Plan if there are any areas that you still need help with. If you are unwell and need to be admitted to hospital you will be seen by the adult teams in A+E and admitted to the medical wards. This can often seem quite daunting as it is a new place and your parents aren’t allowed to stay. Linda will aim to visit you during your first admission so you can let her know if anything is not going to plan. If you have a lot of admissions it might be a good idea to try out staying on Rainbow Ward on your own when you are 16 just to practice. Useful Numbers Linda Keir: Children’s Outpatients: Appointments: Psychology services: