Identification and Successful Targeting of a Larger than Expected Health Literacy Gap in Young People with Sickle Cell Disease Transitioning from Paediatric To Adult Care

Dr Helen Oram

Consultant Haematologist, Lewisham and Greenwhich NHS Trust and King’s College London

Helen graduated from Edinburgh University in molecular pathology and medicine before leaving Scotland to further her training in haematology in UCHL.    She undertook her PhD studies in Cambridge during the rise of genome-wide sequencing, becoming a fellow at Clare College.

During her research, Helen developed tecniques for epigenomic studies of primary leukaemia cells using patient samples and was among the pioneers publishing findings based on chromatin IP sequencing of primary patient tissues.  This sparked her interst in coding and bioinformatics, which she later incorporated into clinical work as geneomics became a standard in haematology diagnostics.

Her clinical focus lies in adolescent and young adult haematology and she is actively involved in the British Society of Haematology Teenage Young Adult Special Interest Group Committee,  She has received national and international recognition for her contributions to the care of teenagers with haemaglobinopathies transitioning to adult care and is currently writing the national guidelineon transition for children and young people with haematological problems.

Bethan Williams

Roald Dahl Transition Co-ordinator

Bethan is a registered paediatric nurse and has been working in both the NHS and Private Healthcare since graduation from the University of Glamorgan (BN CHild) in 2009.  Bethan began her nursing career in South Wales where she consolidated her learning before moving to South East London where she has remained and gained further experience working in all areas of teh acute paediatric pathway.

in 202, Bethan became a Roald Dahl Specialist Nurse focussing on the area of Transition where she has been able to utilise her passion for adolescent healthcare.  Bethan was part of the NHSE Transition Collaborative (Cohort3) and contributed to teh NCEPOD Inbetweeners study.  With the support of the Roald Dahl Marvellos Children’s Charityh Bethan became a Florence Nightingale Scholar in 2023.