Honour your pledge to introduce rare disease alert cards, NHS England urged

Author: Caroline White

NHS England must make good on its pledge two years ago to introduce portable alert cards for patients with rare diseases, insists the charity Genetic Alliance UK in a new report* published today.

NHS England committed to do so in its Implementation Plan for the UK Strategy for Rare Diseases to introduce the cards in 2019 for individuals to carry or wear information containing life-saving details of their condition and medical treatment and hazards.

The European Union defines a disease or condition as rare if it affects fewer than one in 2000. There are over 6000 known rare diseases, with 3.5 million people in the UK and 30 million people across Europe affected.

Eight out of 10 rare diseases have a genetic cause and 99% of genetic conditions are classed as rare.

The cards will not only save lives, but also money, and the scheme, which already exists in Portugal, could easily be adopted in England, says the report.

Alert cards immediately inform healthcare professionals of who and what they are dealing with, saving essential time and preventing inappropriate treatment. They also ensure that symptoms are not mistaken for various behaviours such as drunkenness or antisocial behaviour, says the report.

With all the work already done on the digital transformation of health and social care, most of the systems needed for an alert card scheme are already in place, says the report.

A formal NHS branded alert card would compel health care professionals to integrate the information into emergency health care.

Genetic Alliance UK estimates that the remaining capital cost of the cards’ introduction and ongoing revenue costs would be more than compensated for by the money saved on inappropriate treatment.

“It’s indisputable that medic alerts, be they cards or wearables, have the potential to improve care and treatment and save lives in emergency situations,” commented Genetic Alliance UK chief executive Jayne Spink.

“This is low hanging fruit. It’s grindingly disappointing to be two years on from the commitment made by NHS England to introduce these alerts for rare disease patients and to still be waiting for action,” she added.

*RARE ALERT: Alert cards for rare disease patients. A report prepared by Genetic Alliance UK, February 2020.