In January 2018, NHS England committed to require providers of specialised services to give every patient with a rare disease an alert card. This alert card would include information about the patient’s rare disease, any particular aspects of the treatment of their rare disease that needs to be taken into account in providing care to that patient, and details of how to contact an individual expert in that patient’s care.
Medical alerts have the potential to improve care and treatment and save lives in emergency situations. However, two years on from this commitment from NHS England little has happened.
This report, prepared with the help of Genetic Alliance UK member organisations, Rare Disease UK supporters and clinicians, aims to remind NHS England of its commitment to implement alert cards for rare disease patients, represent the patient experience of using alert cards, and to examine what might work well with the form of an alert card.
The development and implementation of alert cards for rare disease patients must be designed and planned in collaboration with rare disease patients and patient organisations as well as clinicians, and should learn from existing examples both in the UK and internationally.
NHS England should also collaborate with NHSs in the devolved nations to ensure compatibility with their related work around patient-held individual care plans and care coordination.