By Liverpool YPAG,
I live in Lancashire, England with my husband and two children. I have recently been appointed Youth and Family Participation for the NIHR Alder Hey CRF at Alder Hey Children’s hospital in Liverpool. This is a role that I am extremely excited about as it involves closely supporting the Liverpool Young Persons’ Advisory Group and ensuring that young people have their voices heard and are an integral part of the research process from the very beginning. My role at the CRF is interesting and varied, working with young people, families, industry stakeholders and clinicians. I am motivated to promote the role of young people in research, as I feel this helps positively in their own health self- management.
I am also a Patient Research Ambassador, a role I began a few years ago when my daughter was diagnosed with Lupus. After her excellent treatment we decided to get become involved with Alder Hey CRF and research. I became a Patient Research Ambassador after seeing the difference research made to the treatment of Lupus and many other rheumatology conditions, and I attend and promote the work of Patient Research Ambassador’s at many events and conferences both in the UK and abroad. I am a member of several steering group committees and parent support groups including Lupus UK and the TRECA Study, and enjoy promoting and advising on a number of research projects. Currently I am involved in the North West Coast Local Clinical Research Network (LCRN) Research Community Steering Committee which is a new and exciting patient led project. I feel my role of Youth and Family Participation Officer works alongside my personal involvement in research and has become something that is very important to me. I am believe that my work as a Patient Research Ambassador further enables me to positively help and promote the vital role that research plays in many young people’s lives including my daughters.