SJS Passport aims to support patient care

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Drug Safety PPI group and SJS Awareness UK

SJS Passport offers simpler way to coordinate healthcare

Many SJS (Stevens-Johnson Syndrome) and TENS (Toxic Epidermal Necrolysis Syndrome) survivors have to manage multiple treatments, medications, appointments and consultations, which can be across a variety of specialties and hospitals. Keeping track of all of this has been described by one patient as a "nightmare".

The Wolfson Centre for Personalised Medicine Drug Safety PPI (Patient and Public Involvement) Group has worked with patients and representatives from SJS Awareness UK and the MRC Centre for Drug Safety Science to design and produce the "SJS Passport". This passport can be used to record information about diagnosis, medications, allergies, treatment plan and other important information that the patient may wish to share with the health professionals looking after them. It can be completed by the patient themselves, or by a family member, friend, or carer.

Stuart Doyle, author of "High Dependency" and a survivor of TENS, described the SJS passport as "a potential game changer for all SJS patients here in the UK." 

He said, "this truly is a massive step forward for us all... No more explanations, from now on all you need do is hand them your SJS Passport! It could be that simple from now on - forever!"

Patients can now request their free SJS Passport by contacting SJS Awareness UK at info@sjsawareness.org.uk

In order to make sure that the passport is as helpful as possible, a study is underway to evaluate the booklet and see where it could be improved. Anyone who wishes is invited to take part in this SJS Passport Evaluation Study. If you are interested in taking part or would like to know more, please contact Anita Hanson on 0151 7955403 or Anita.Hanson@liverpool.ac.uk

Click here to visit the SJS Awareness UK website.