Transforming Transition: enhancing practice in haemophilia

Open access


Transition is the term used to describe the process of approaching and crossing the chronological boundary between paediatric and adult care services. Transfer of care describes the administrative arrangements associated with moving from a paediatric to an adult service across this boundary. Transforming Transition was a nurse-led initiative designed to facilitate the sharing of knowledge and experience to enhance transition practice in the UK. The aims of the programme were to secure changes in working practices that enabled nurses to drive improved transition outcomes, enhance self-management by people with haemophilia and develop clinical leadership. From the outset of the programme it was clear that there were differences in practice and that sharing practice would be one route to addressing some of these variations. As a result of the knowledge and experience shared through the programme, resources described in this paper are available to all haemophilia centres. Sharing between people with haemophilia, their families and carers, and the haemophilia clinical team have resulted in the development of practical resources that enhance practice within the haemophilia centre. Sharing of practice between nurses and young people with haemophilia at the programme workshops provided a focus for development of local and regional action plans, a framework for reviewing progress, the introduction of transition clinics and improved transition documentation.

1. Department of Health and Social Care. National service framework: children, young people and maternity services. 2004. Available at publications/national-service-framework-children-young-people-and-maternity-services (accessed 19 October 2018).

2. National Institute for Health and Care Excellence. Transition from children’s to adults’ services for young people using health or social care services. NICE guideline [NG43], February 2016. Available at (accessed 19 October 2018).

3. NHS England. 2013/14 NHS standard contract for haemophilia (all ages). B05/S/a. NHS Commissioning Board, 2013. Available at b05-haemophilia.pdf (accessed 19 October 2018).

4. Chaplin S. Transition from paediatric to adult services in haemophilia. J Haem Pract 2015; 2(2) : 1-2. doi:

5. Waldboth V, Patch C, Mahrer-Imhof R, Metcalfe A. Living a normal life in an extraordinary way: A systematic review investigating experiences of families of young people's transition into adulthood when affected by a genetic and chronic childhood condition. Int J Nurs Stud 2016; 62: 44-59.

6. Gray WN, Schaefer MR, Resmini-Rawlinson A, Wagoner ST. Barriers to transition from pediatric to adult care: a systematic review. J Pediatr Psychol 2018; 43: 488-502.

7. National Institute for Health and Care Excellence. Transition from children’s to adults’ services. Quality standard [QS140]. 2016. Available at chapter/Quality-statements (accessed 19 October 2018).

8. Revans RW. ABC of action learning. London: Routledge, 2011.

9. NHS Improvement. Quality, service improvement and redesign (QSIR) tools. 2018. Available at (accessed 19 October 2018).

10. Lave J, Wegner E. Situated learning: legitimate peripheral participation (Learning in doing: social, cognitive and computational perspectives). Cambridge University Press, 1991.

11. Lewin K. Action research and minority problems. Journal of Social Issues 1946; 2(4): 34-46. doi:

12. Pembroke L, Dodgson S. Young people’s experience of transition from paediatric to adult haemophilia care in the UK. J Haem Pract 2018; 5(1). doi:

13. Holland M, Dodgson S, Chaplin S. Steps to transition. J Haem Pract [forthcoming, 2019].

14. NHS England. NHS Five Year Forward View. Available at (accessed 19 October 2018).

15. Southampton Children’s Hospital. Transition to adult care: Ready Steady Go. Available at http:// TransitiontoadultcareReadySteadyGo/Transitiontoadultcare. aspx (accessed19 October 2018).

16. Nagra A, McGinnity PM, Davis N, Salmon AP. Implementing transition: Ready Steady Go. Arch Dis Child Educ Pract Ed 2015; 100: 313-20. doi:

17. Dodgson S, Bryan J, Fletcher S, et al. Aspire. Empowering professionals to lead haemophilia care. J Haem Pract 2018; 4(1): 22-8. doi:

18. Cardiff and Vale Local University Health Board. Haemic’s Challenge. Available at (accessed 19 October2018).

19. Haemnet YouTube channel. Available at (accessed 19 October 2018).

Journal Information


All Time Past Year Past 30 Days
Abstract Views 0 0 0
Full Text Views 44 44 31
PDF Downloads 26 26 19