Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department takes to measure patient experience for people with beta-thalassaemia.

NHS England has looked to address health inequalities within the Haemoglobinopathy patient population, which includes beta-thalassaemia patients. In the latter part of 2019 NHS England concluded a review of Haemoglobinopathy services; resulting in the development of services which will provide the opportunity to capture patient experience at a local level. This includes the National Haemoglobinopathy Register which can capture some elements of patient experience as part of the patient’s annual review. Furthermore, in October 2019 the national conversation on rare diseases survey was launched to identify the major challenges faced by those living and working with rare diseases. We received almost 6,300 responses which, alongside lessons learned from the COVID-19 pandemic, will be used to shape the post-2020 UK Rare Diseases Framework.