“We see the great potential for Summary Care Records to support staff across the NHS in dealing with rare conditions, such as muscular dystrophy, and are committed to raising awareness of the scheme amongst our supporters.

Our recent report into hospital care for neuromuscular patients, Hospitals in Focus, highlighted a multitude of incidences when patients would have benefitted from being enabled to present information on their conditions in a formal way.

We encourage patients to take ownership over the records and to communicate the ways in which they feel the record could best be used to support individual care.”

Nic Bungay, Director of Campaigns, Care and Support, Muscular Dystrophy Campaign