JULIE BENSON

Julie has qualifications in project management, advocacy, quality assurance and customer services. She works as family support manager for Rett UK, providing professional information and support to families and carers of people with Rett syndrome.

Julie has worked in special education for over seven years, helping children with multiple and complex needs across a range of ages, and has been a qualified advocate in the field of health and social care for over 15 years.

She has personal experience of learning disabilities as the primary carer for her sister who has cerebral palsy. This has given her valuable insights into ensuring the best outcome and experience from the carer’s perspective.

Julie co-produced the Rett Syndrome National Best Practice Management and Care Guidelines for health and social care professionals, as well as a recent Family Companion guide.

Rett UK healthcare guidelines

Julie talks about how Rett UK approached the creation of their National Best Practice Management and Care Guidelines developed in partnership with NHS professionals with special interest and expertise in Rett Syndrome.