Patient advocate; Netherlands

As a result of suddenly losing my hearing some time ago, I discovered there was more to be known and done about this mostly unexplainable condition than what I’d been told by GPs and consultants. Somehow, it was this revelation that made me decide to advocate for patients, using my own experience as an impetus. I started by volunteering for and then writing a column for the RNID (formerly Action on Hearing Loss) magazine, whilst soon becoming involved with other hearing-related initiatives. I joined the steering group of a James Lind Alliance Priority Setting Partnership, looking to discover which questions members of the hearing loss community would most like researched. I had a one-year fellowship with the NIHR-funded, CLAHRC (Collaborative for Leadership in Applied Health Research), specifically aiming to improve how hearing loss is and is not dealt with in care homes, while learning about research..

Today my new ‘career’ has expanded, in which I support research on young people’s mental health and on multi-morbidities; I’m on a patient steering group as part of the Kings College Digital Health Hub . I regularly review abstracts for this Forum and have attended several of them, serving as a judge and presenting the Patients’ Choice Award in Copenhagen in 2023.

I have ongoing involvements with research projects in six universities. I cycle here and there, read a French novel a month as part of a U3A group and play a lot with my baby grandson. My life is a wonderful balance of work and play.

Finally, with all the work I do as a patient partner, I continually wonder what its impact can and should be, hence, the session I will lead at the Forum.