Patients Know Best works with ABMU to help 12 year old Sam to manage his complex condition

Lee Everett-Pride, from Swansea, was involved in one of the ABMU Patients Know Best pilots as her 12-year-old son Sam has juvenile dermatomyositis.

This is a rare auto-immune disease that causes inflammation of the skin and the muscle.

As a result, Sam has seen doctors not only in Swansea and Cardiff but also in London’s Great Ormond Street Hospital.

The PKB system was not fully up and running during the pilot, so Lee was only able to access some of its features – but said it had the potential to be very useful.

Lee said:

“Instead of having to take the paperwork to each of the hospitals for them to photocopy for their records, it’s all there electronically through PKB.

“It allows for easier communication because you can invite doctors or anyone else to access your page.

“There is an option to send non urgent messages to consultants via the tool which will help the patient to manage their own health and could reduce the number of hospital appointments.

“There’s a journal you can use to record symptoms and useful information, and an area to document medication. Both of these are very useful when you are seeing different consultants as all the information is in one place.

“It is in the early stages but once it’s fully up and running I think it is going to be very beneficial to both patient and doctor.”

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