Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking to improve patient outcomes for people affected by transfusion dependent beta thalassemia.
We published the new United Kingdom Rare Diseases Framework in January 2021, outlining the key priorities for rare diseases including coordination of care and improved access to specialist care, treatments and drugs.
In 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. NHS England has worked closely with the haemoglobinopathy coordinating centres (HCCs) across the country to provide an expert clinical panel to understand, assess and inform on the effect of COVID-19 for patients with beta-thalassemia, sickle cell disease and other inherited red cell anaemias.