MPSIV/MPSVI Resilience Workshop held Friday 8th – Saturday 9th March

MPSIV/MPSVI Resilience Workshop held Friday 8th – Saturday 9th March


This workshop was organised and run by the metabolic teams from Birmingham Children Hospital, Royal Manchester Children’s Hospital and Addenbrookes they asked for two advocacy team members from the society to help support the event – Sophie Thomas and Sally Briody attended the weekend.

The weekend gave the families who attended the opportunity to spend time with each other and some new connections were made in the process. There were several talks given by both nurse specialists and clinical psychologists who work within the metabolic departments at both hospitals.

There was also workshops where everyone split off into groups, MPS patients, parents/carer’s and siblings and specific work/discussions were undertaken dependent on what group each person was in.  The event  was informative and supportive but also fun – after all it was the weekend!

nursesRead below some feedback on how great the workshop was:

Tia – MPSIV  “It was great, I got to meet up with people I don’t normally see and had fun”

Xena: MPSIV  “I had fun today, I met new people and learnt new things about MPS IV”

Shauna (Clinical Psychologist at BCH)  “Today was about helping children to cope better with their conditions through explaining feelings and ideas with other children with similar conditions with a focus on connecting with each other and having fun”

Catherine (Metabolic Nurse Specialist)  “ Today was for children to understand and meet each other children with the same condition and to have some coping strategies when facing difficult times. I think it went really well and I am pleased the families came and took part”