Simon Fletcher

Simon Fletcher is a nurse and a mixed methods researcher specialising in the patient experience of gene therapy. Much of his research in the past 5 years has focused on gene therapy for haemophilia, and he is currently completing a PhD looking at the lived experiences of people with haemophilia and their families of gene therapy. He hopes that the experiences, skills, and understanding he has developed in bleeding disorders will help shed light on the patient’s understanding and hopes for gene therapy for cardiomyopathy.

Publications

1. (Mis)Gendering Bleeding Disorders Care: A Qualitative Case Study of a Trans Person with a Bleeding Disorder. Fletcher S et al. (2024). Journal of Haemophilia Practice 
2. Barriers to gene therapy, understanding the concerns people with haemophilia have: an exigency sub-study. Fletcher S et al. (2024). Orphanet Journal of Rare Diseases
3. Shared decision-making for gene therapy in haemophilia care. Fletcher S et al. (2023). Journal of Haemophilia Practice 
4. Educational needs of patients, families, and healthcare professionals to support the patient journey in haemophilia gene therapy in the UK. Boyce S et al. (2023).Orphanet Journal of Rare Diseases
5. Plain Language Summary of the GENEr8-1 Clinical Trial of Valoctocogene Roxaparvovec Gene Therapy for Haemophilia. Lowe G et al. (2023). Future Rare Diseases
6. Expectation and loss when gene therapy for haemophilia is not an option: An exigency sub-study.  Fletcher S et al. (2023). Haemophilia
7. “I didn’t know women could have haemophilia”: A qualitative case study. Fletcher S et al. (2022). Journal of Haemophilia Practice  
8. The experiences of people with haemophilia, and their families, of gene therapy in a clinical trial setting: Regaining Control, the Exigency Study. Fletcher S et al. (2022). Orphanet Journal of Rare Diseases
9. The lived experience of a novel disruptive therapy in a group of men and boys with haemophilia A with inhibitors: Emi & Me. Fletcher S. et al. (2021). Health Expectations
10. Fitness enhances psychosocial well-being and self-confidence in young men with haemophilia: Results from Project GYM. Khair K. et al. (2021). Research and Practice in Thrombosis and Haemostasis (RPTH)
11. An exploration of why men with severe haemophilia might not want gene therapy: The exigency study. Fletcher S. et al. (2021). Haemophilia
12. Parental perspectives on gene therapy for children with haemophilia: The Exigency study. Khair K. et al. (2021) Haemophilia