Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what progress he has made on the development of medical alert cards for people with rare and genetic conditions following the commitment made in the Implementation Plan for the UK Strategy for Rare Diseases.

In the Second Progress Report from the Rare Disease Policy Board (2018), NHS England proposed to give every patient with a rare disease an ‘alert card’, which would include information about the patient’s rare disease.

This proposal to develop ‘alert cards’ was not progressed at the time due to capacity constraints. This proposal has not featured in the subsequent England Rare Diseases Action Plans (2022 and 2023), and NHS England is now focussing on delivering against the actions identified in these new plans. Under the coordination of care priority this has included developing a toolkit for virtual consultations to help people with complex, multi-system rare diseases access multiple specialists without needing to travel. The England 2023 Rare Diseases Action Plan includes actions to provide the evidence needed to operationalise better coordination of care in the National Health Service and to include the definition of coordination of care in service specifications for patients with rare diseases.