- We have over 120 12yrs – 24yrs olds with Sickle cell disease (SCD) being managed in the transition service at Evelina (Paediatric) and St Thomas (adult) Hospital.
- An adolescent clinical nurse specialist and adolescent psychologist begin to work with the young patients at age 12-14 years, through to 17-18 years (point of transfer) and continue to support them during the first few years in the adult service until the age of 24.
- We recognise that during this time, young people make a range of transitions in addition to moving across to the adult service. These include starting college, University and work. They also face a number of challenges/opportunities, including managing increasing independence and responsibility, developing a positive identity, achieving educational and vocational goals, increased reliance on peer group for support and developing meaningful relationships. As such, we aim to support young people in managing these transitions successfully and developing the skills to make the best of their opportunities. We are currently developing information booklets and peer support groups to help manage the transition to college and University.
- Transition Open Days: These educational events are run twice a year to give specific information empowering young people to develop good health habits and encouraging a positive outlook on their future. These events are also used to collect information to try and understand the concerns, and expectations for young people with SCD.
- Multidisciplinary Transition clinics. To reassure the young person and to alleviate the perception that the paediatric service is abandoning them, we run joint transition clinics. Here, the young person and their parents/family meet the adult and paediatric Sickle teams together, along with the psychologist to discuss the transition plan. These clinics are held in the paediatric out patient area (a familiar, non -threatening environment) and in this way the adult providers are perceived as positive additions to an already successful paediatric team.
- The Health Transition Plan (passport document) is an assessment tool developed to aid in systematically identifying the young person’s transitional needs. This includes assessing their understanding of their condition, medications, self management & advocacy skills, as well as emotional readiness for transfer..
- The psychology service can offer support in a variety of ways including building up confidence and a positive identity, learning to live with and accept the condition, stress management and study skills, communication and assertiveness skills, strengthening support networks and relationships and CBT for pain management.
Useful websites
www.youthhealthtalk.org
www.transitioninfonetwork.org.uk
www.connexions-direct.com
www.teenagehealthfreak.org.uk
