By Liverpool YPAG,
Blog by Jenny Preston
Lupus and You – first patient and family workshop
On the 19th March 2016 a workshop was held with young Lupus patients and their families attending the UK’s only paediatric Lupus Centre of Excellence. This workshop was the first of many workshops planned for 2016-2017 and was organised by the Lupus team, colleagues from the hospital research facilities and the Patient and Public Involvement Manager at Alder Hey Clinical Research Facility.
Purpose of the workshop
The purpose of the first workshop was twofold:
Overall the workshop received very positive feedback and for some families it was the first opportunity to talk openly about some of the issues they face on a daily basis with others with similar experiences.
The day concluded with a summary of the days discussions and consideration of next steps. The families agreed that other similar workshops would be helpful. The next Lupus and You workshop is scheduled to take place on the 24th September and will focus on medication and treatments for Lupus as well as the issue of transition.
For further information about future workshop contact: Lupus@alderhey.nhs.uk