Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, if his Department will take steps to create an accessible portal to access sickle cell patient records and care plans.

There are no current plans to create a portal to access sickle cell patients’ records and care plans.

It is essential that patients and their care teams have appropriate access to information relevant to their care. That is why the Department and NHS England have already published commitments to ensure all patients can access their health information, so they are empowered to make better decisions about their health, and to reduce the dependency on contacting general practices (GPs) for information that they could readily access. Giving patients access to their GP records data has been a long-standing GP contractual commitment, and one in five GPs now offer full prospective access to their patients. We remain committed to increasing the number of patients who can view their GP health record through the NHS App and other online services.

The National Haemoglobinopathy Registry is a confidential database of patients with red cell disorders living in the United Kingdom. It holds clinically important information related to patients’ health, treatment and complications, and is available to specialist haemoglobinopathy teams. The Haemoglobinopathies Clinical Reference Group is in the process of developing a standard care plan template, which can be used in a digital format. Options for making this widely available to patients and clinicians across the patient pathway are currently being explored.