New Duchenne muscular dystrophy alert card launched

Published Date
17/12/2014
Author
bobby Ancil
Category
Campaigns

The Muscular Dystrophy Campaign Bridging the Gap project are pleased to announce the launch of a new alert card for people living with Duchenne muscular dystrophy. This new card will mean that families will have the security of knowing they can easily inform emergency health care professionals of the vital and specific issues that affect people with Duchenne muscular dystrophy.

The alert card, which has been developed alongside TREAT-NMD, Action Duchenne and the American organisation Parent Project Muscular Dystrophy, is conveniently shaped to fit inside a wallet and outlines key recommendations and precautions that a non-specialist clinician would need to know during a time of worsening health.

The Duchenne muscular dystrophy alert card was produced by a team of people living with Duchenne muscular dystrophy, leading neuromuscular specialists and partner charities to ensure that it is an effective information tool for families and health care workers. The card also includes important contact information on a person’s specialist neuromuscular, respiratory and cardiac consultants which will ensure expert advice will be much easier to access.

To receive the card you can email info@muscular-dystrophy.org or call the Muscular Dystrophy Campaign freephone helpline on 0800 652 6352.Vivek Gohil is 24 from Leicester and a West Midlands forum neuromuscular champion

Speaking about the launch of the alert card Vivek Gohil, 24, who comes from Leicester who has Duchenne muscular dystrophy said:

“The new Duchenne muscular dystrophy alert card is a great idea as it will increase help reduce the time that patients receive specialist neuromuscular care, and help shortern the amount of time people stay in hospital. This is vital because with a condition such as Duchenne muscular dystrophy there can be severe health risks with problems such as chest infections. This alert card will ensure that hospital staff take the correct care actions for people with Duchenne muscular dystrophy.”

Muscular Dystrophy Campaign Head of Information and Neuromuscular Outreach, Neeru Malhotra said:

“Families often tell us that they need something informative, to the point and easy to use if they find themselves in an emergency situation. This new alert card will mean families are empowered to inform emergency health professionals of essential specialist information about Duchenne muscular dystrophy, as well as making sure specialist neuromuscular clinicians are informed that their patient has been admitted to a hospital.”

The Duchenne alert card is the first in a line of new condition specific alert cards and care plans that are being worked on by the Muscular Dystrophy Campaign and partner charities. We are developing information care plans and alert cards for people living with spinal muscular atrophy (SMA), Charcot-Marie-Tooth disease (CMT), and myotonic dystrophy. We will then develop similar resources for other neuromuscular conditions.

More details about the Muscular Dystrophy Campaign’s alert cards can be found in the personal support section of the hub. You can also view a PDF file of the alert card and the information within it.

To receive your own Duchenne muscular dystrophy alert card please order it by emailing info@muscular-dystrophy.org or by calling the Freephone helpline on 0800 652 6352.

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