In 2024 we were commissioned by NHS England to address one of the recommendations from the Infected blood Inquiry presented to Parliament in the same year.
The Infected Blood Inquiry, reported that from 1970 onwards failings in treatment using infected blood and blood products resulted in over 30,000 people being infected with HIV and one or more types of hepatitis, with around 3,000 people dying of those infections.
People with thalassaemia, a type of inherited genetic haemoglobin blood disorder, were subject to receiving infected blood during their standard treatment of regular frequent blood transfusions and suffered consequent harm from contracting infections. The Infected Blood Inquiry resulted in 12 overarching recommendations, many of which are relevant to people living thalassaemia. One recommendation specifically focused on people with thalassaemia stating that:
“
particular consideration be given, together with the UK Thalassaemia Society….., to how the needs of patients with thalassaemia ….. can best holistically be addressed.”
NHS England, commissioned AGEM to carry out a qualitative and quantitative needs assessment of thalassaemia in England to address this recommendation.
The aim of this work was to:
- identify the health needs of people with thalassaemia across England
- report health inequalities experienced by people living with thalassaemia
- report variation in access and outcomes across England
- identify gaps in service and opportunities to improve the health of people who live with thalassaemia
- inform future policy and service development
We achieved these aims by synthesizing qualitative information from interviews and surveys with service users, patient representative organisations and professionals who provide thalasseamia care in addition to analysis of national data about treatment in different centres around the country. In addition we carried out a document review of current policies, service specifications and peer review visit reports.
Read more here:
SPH Thalassaemia Health Needs Assessment