For patients with sickle cell and thalassaemia the transition from paediatric to adult services can be a daunting change. Patients will not only have to meet and get to know different teams, but some will also have to navigate different hospital sites. In addition, there is a greater autonomy in adult services and patients will have the opportunity to be more active in their care, which takes confidence and independence. Moving through this transition without support can be difficult, which is why the role of the Transition Clinical Nurse Specialist is so important.
Specialist Transition nursing in this Network goes as far back as 2008 when the country’s first transition haemoglobinopathy nurse was appointed at Guy’s and St Thomas’s Hospital NHS Trust. Only a few years prior to that, in 2004, The Royal College of Nursing recognised the importance of transitional care, stating that it is “an essential component of high quality care for young people and good transition can improve health-related quality of life”*. However, it was not until Mid-2008 that a Transition Nurse first arrived in London at Guy’s and St Thomas’ NHS Foundation Trust. Another position followed in July 2014 at King’s College Hospital NHS Foundation Trust funded by Roald Dahl’s Marvellous Children’s Charity briefly held by a colleague who was replaced in October 2016 by a new Transition Clinical Nurse Specialist, Giselle Padmore-Payne.
Giselle supports patients throughout their transition, beginning at age 13/14 when the subject is first introduced during a clinic consultation, through to age 17/18 when she works with patients to create detailed plans for the move, and beyond into the adult service. “The best feeling was when one of my Young Adults told me I was her role model and she looks up to me and is now in university aspiring to become a qualified Nurse so that she can be kind, caring, and compassionate and show empathy for patients and their families like I do. I will never forget this conversation; I know I make a difference in my patients’ lives”.
In order to truly support patients through the transition process Giselle works across both adult and paediatric services, meeting patients in clinics and providing support before, during and after the change. Transition is a gradual process and is never made prematurely before each individual patient is ready. Giselle spends time talking with each patient and their family about the care and support they think they will need after the move and how ready they are to make the move. “For me working across both the Adult and Paediatric Services has proven challenging, it takes excellent work load management, excellent interpersonal skills, knowledge and experience as well as support of an excellent team, all of which I am very lucky to have.”
Transition Nurses work with patients to create an individual transition plan that is used throughout the change. The plan includes information about the patient’s health care needs, their own knowledge of their condition, how confident they feel managing the different aspects of their condition, suggestions for building the confidence required to manage the condition independently, and their plans for the future. Having a comprehensive plan can relieve the stress of transitioning and help make it an exciting and enjoyable time.
There are two Transition Clinical Nurse Specialists within the South Thames Network, Giselle at King’s and Luhanga Musumadi at Guy’s and St Thomas’, and we are exceptionally lucky to have their expertise. The role provides invaluable support to patients as they move from paediatric care to the adult service and demonstrates a commitment to improving the patient experience. “I feel privileged to be in a position to provide guidance and educational support for the young adults and their families. If I can make a difference to even one young adult in relation to their transition process, I know there is high possibility that the risk of mortality and morbidity for them may be reduced. It’s extremely rewarding when a young adult thanks you for all your support and efforts, it makes my somewhat challenging role rewarding and worth it. To conquer better care delivery and patient experience through transition is my overall aim.”
*https://www2.rcn.org.uk/__data/assets/pdf_file/0011/78617/004510.pdf, Adolescent Transition Care, RCN, 2004 (updated 2013)
NICE have also updated their transition guidelines: https://www.nice.org.uk/guidance/qs140