Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 15 May 2023 to Question 183537 on Rare Diseases, for what reason the proposal to provide patients with alert cards was not included in the England Rare Diseases Action Plan 2023; and how his Department plans to ensure adequate co-ordination of care for people with rare conditions in emergency settings.

There are currently no plans to include a proposal to provide alert cards to patients with rare diseases in the England Rare Diseases Action Plan in the next five years.

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. Progress is being made on existing actions to improve coordination of care and awareness of rare diseases amongst all health care professionals, including those who work in emergency settings.