Medical alert keyrings for patients with PNH

The National PNH Service have commissioned medical alert keyrings for patients with PNH (Paroxysmal Nocturnal Haemoglobinuria). The purpose of these keyrings is to help identify patients who have a diagnosis of PNH to other clinical teams involved in their care to ensure they receive safe and appropriate
treatment.

There are two keyrings. One will be given to patients with a diagnosis of PNH (PNH clone over 50% and on anticoagulation). The second will be given to patients being treated with complement inhibitor therapy for PNH management. This is supported by charitable funds raised by the patients with PNH and their families and friends alongside Leeds Hospital Charities. The decision to create the keyrings has come from patient feedback and the patient groups – PNH Support and PNH Scotland and the keyrings will be given to our patients when they attend clinic.

Louise Arnold, Advanced Clinical Practitioner for the PNH service says, ‘We have introduced key rings for patients with a diagnosis of PNH to enhance patient safety and awareness. The key rings contain safety information and a QR code that provides further details and contact information for the PNH team. This initiative was driven by patient and family feedback to facilitate easier sharing of safety information among caregivers. Our national service adopts a shared care approach with local clinical teams across the UK, ensuring 24/7 clinical cover to address potential complications, including the risk of meningococcal infection associated with complement inhibition therapy. We believe that this initiative will contribute to increased awareness of this rare disease and its management’.