PARLIAMENTARY WRITTEN QUESTION
Rare Diseases: Patients (29 June 2020)

To ask the Secretary of State for Health and Social Care, with reference to the UK strategy for rare diseases: implementation plan for England published on 29 January 2018, what progress the Government has made on working with providers to produce alert cards for patients with rare diseases; and whether people with thrombotic thrombocytopenic purpura (TTP) will be included in the list of those eligible to receive an alert card.

Asked by:
Bob Blackman (Conservative)

In 2019, NHS England identified those specialised services in which patients with rare diseases are treated and asked the 150 providers that deliver these services to self-assess against three key criteria: care coordination; alert cards; and transition. In total, 1,000 clinical teams undertook the assessment and the completion rate was 85%. Of those providers that self-assessed: 91% confirmed that there is a person responsible for coordinating the care of any patient with a rare disease; 56% confirmed that they gave each person an alert card; and 91% confirmed that they had active transition in place.

Alert cards are already used in some hospitals that treat patients with thrombotic thrombocytopenic purpura. NHS England is currently in the process of commissioning a service for patients with thrombotic thrombocytopenic purpura. Once a full, national service is established, an alert card will be rolled out across the service.

Answered by:
Jo Churchill (Conservative)
17 July 2020