Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the implications for his policies of the findings of the No One's Listening report published by the all-party Parliamentary group on sickle cell and thalassaemia on 15 November 2021.

While no formal assessment of the report has been made, it raised important issues around awareness amongst healthcare professionals, quality of care, inequalities, and variabilities in treatment for people living with sickle cell disease. The NHS Race and Health Observatory recently appointed a sickle cell expert to drive forwards work to tackle ethnic health inequalities.

To improve treatment for sickle cell disease, we have established ten specialist haemoglobinopathy coordinating centres and NHS England is deploying crizanlizumab, the first treatment for sickle cell disease in over 20 years. NHS England has also prioritised the development of a national haemoglobinopathy register to support clinicians in providing equitable, consistent treatment of patients. Additionally, a multi-stakeholder subgroup reporting to NHS England’s Haemoglobinopathy Clinical Reference Group has been formed with the remit to develop guidance and processes that will support patients and clinicians to manage pain relief in a hospital setting.

The United Kingdom Rare Diseases Framework outlined a national vision for improving the lives of those with rare diseases, including sickle cell disease. All four nations are now developing clear action plans to implement the Framework.