Help
GenerationR Logo

Lupus and You – Patient and family workshops

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 IMG_0589paediatric 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:

  • To be responsive to the on-going needs of young Lupus patients and support them in developing resilience and coping strategies to minimize the impact of their condition on their lives
  • To highlight how research in informing their care package in how they are treated, and developing new medicines/technologies to combat the condition.

The workshop involved a series of interactive session focusing on fatigue and research views and participation. Click here for a summary of the day. For the full report click here.

Attendees

  • Seven families attended the workshop to include six young people with Lupus, two siblings and ten parents.
  • The Chair of Lupus UK (Mr Kevin Weston) also attended and as a parent of someone with Lupus actively participated with the parents activities.
  • Nine members of staff from the Lupus Multidisciplinary team and colleagues from the hospital’s research facilities supported the meeting.

Feedback

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.

Next Steps

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