STSTN is in a process of reviewing what we do as a network. We are beginning a needs assessment exercise to gauge what services are currently available in the region and what areas, such as clinical needs, patient services, peer support, and education, need attention and development. Our main aim is to improve the experience …
Two patient representatives needed to help us shape the future of STSTN Read More »
STSTN is approaching it’s 5th birthday. We thought it was an appropriate time to take stock of our work since 2011 and plan a vision for the next 5 years. We are holding an interactive meeting in early November 2016, involving our region members to, amongst other items, present a review of a recent Needs …
The results of a newly developed survey of people living with Sickle Cell Disease (SCD) in England have revealed that information provision and lack of public awareness of the condition are some of the biggest issues affecting their experiences, and in turn, the care they receive. The survey was a Patient Reported Experience Measure (PREM), …
Luhanga Musumadi, Advanced Nurse Practitioner in Haemoglobinopathies & Lead nurse for Adolescent Transition Service at Guy’s & St. Thomas’ NHS Foundation Trust, shares his experiences of managing and running the transition service for young sickle cell and thalassaemia patients. If you would like to know more about the service, please contact Luhanga directly https://www.youtube.com/watch?v=Cjj6X8zOAjU&feature=youtu.be