Expert by Experience

Expert by Experience is the term used to describe an individual who has a personal lived experience, or experience caring for someone, who uses Health/Social Care Services.

Professional experts have essential skills and knowledge, but most people will recognise that when it comes to understanding how it feels to live in care, the expert is the individual who has lived in care.  It is the same when we seek to understand how it feels to be held in a restrictive physical intervention, the subject-matter expert is the individual who has been restrained and their involvement in training enriches training programmes.

The Restraint Reduction Network (RRN) training Standards, state:

"Training providers must ensure that people with lived experience are involved in the development and delivery of training which involves the use of restrictive interventions." (RRN, 1.5)

The guidance is explicit that this involvement must be seen in the context of a professional relationship and when involved in training there must be adequate recompense.  NAPPI uk employs two Experts by Experience, very different individuals with very different experiences, but they have something in common. Although several years apart, they both approached NAPPI uk and asked to be involved. They took this huge step, because it was important to them to have the opportunity to ‘have a voice’, to be listened to and to feel valued.

Tony joined the NAPPI team in 2013 and works as a trainer within the Co-Production department. Tony likes being the first to achieve things, such as being the first service user to present to a panel meeting at BILD (British Institute of Learning Disabilities). However, whilst enjoying being ‘the first’ Tony has never wanted to be ‘the only’, so he was thrilled when Victoria joined the team.

Victoria joined the NAPPI team in 2019 and works as an assessor within the Co-Production department. One of the other roles she really enjoys is to oversee development and reviews of EasyRead guides. When asked to assist to write a guide to explain what is meant by an Expert By Experience, Victoria asked if she could tell her story in her own way. Not only did she write the story of her journey to become an Expert by Experience, but she took photographs of Lego figures to make it easy for others to follow.

Expert by Experience EasyRead Guide. By Victoria Hatton