Simon Stones

Patient Advocate and Consultant

Simon has lived with arthritis from the age of three and was diagnosed in his teens with Crohn’s disease and fibromyalgia, among other conditions. In 2012, Simon’s former paediatric rheumatologist introduced him to healthcare research, and Simon become one of the first young patients to be involved alongside healthcare professionals. He’s advocated locally, nationally and internationally ever since for people living with chronic conditions and their carers to be involved in research about their conditions. The result is better quality research, as well as more favourable health outcomes.

Simon studied biomedical sciences at university, graduating with a first. Inspired by his own experiences, he’s determined to make improvements for other young people with chronic conditions. He’s been involved in over 20 research studies and has contributed to the development of six international research recommendations about rheumatology to date.

Through his website and social media Simon shares his academic work and personal experience, communicating with the wider patient community. At just 26 years old, Simon has already won numerous awards. He’s been recognised internationally and honoured with the inaugural WEGO Health Award in the ‘Healthcare Collaborator: Patient’ category. Simon was also appointed as an Associate Fellow of the Royal Commonwealth Society, in recognition of his commitment to improving the lives of young people through research.

Determined to make sure patient voices are heard at all levels, Simon is a trustee of Fibromyalgia Action UK and RAiISE, a European Network for Children with Arthritis (ENCA) board member, and president of the European Network of Fibromyalgia Associations (ENFA).

Simon is currently finishing a PhD at the University of Leeds as an expert-by-experience researcher.

“Use your experience to create change. It took me some time to realise that my voice mattered – but once I did, there was no holding me back!”