Rett syndrome Emergency Alert Card

 

As we are seeing an increasing number of emergency hospital visits for UK patients, we’ve made a Rett syndrome alert card to help families and carers immediately highlight Rett syndrome specific issues on arrival at A&E.

Many Rett families and carers will have experienced the difficulties that can result from a lack of knowledge about Rett syndrome in their day to day lives and through routine hospital visits.

But when Rett syndrome is unknown to emergency medical staff this poses a particularly serious problem.

We’ve developed the Rett syndrome Emergency Alert Card to convey the top line, most critical information about Rett syndrome to A&E staff in a crisis situation.

The card is credit card sized so it can be carried at all times so that it can be on hand in an emergency to help identify issues, improve care and potentially save lives.

Emergency health plans and/or hospital passports work well when alert cards cannot convey enough information or when there are specific issues affecting a patient which need to be highlighted.

This alert card provides:

• Top line information about baseline presentation in Rett syndrome
• Common acute illnesses and infections in Rett Syndrome
• Other key considerations such as which medications to use with caution
• Emphasis that research shows that survival into the 5th decade is typical in Rett

Resources that have helped us to develop the Rett syndrome Alert Card:

• Genetic Alliance UK Alert Cards Report 2024  
• UK Rett Disorders Health Checklist 
• Rett Syndrome BMJ Consensus Guidelines 

We will be sending these out in the next two weeks to all registered UK patients. If your loved one with Rett is not registered, please register today and we will get your alert card sent out to you.