Disability Power List 100 2019

I am thrilled to announce that I have been included in the Disability Power List 100 2019 – an annual publication of the 100 most influential people with disabilities in the United Kingdom. I’ve kept this quiet for a few weeks since I found out, but it really couldn’t have come at a better time after a really tough few months.

I was announced as one of the most influential people with a disability in the UK at a reception at the House of Lords on Tuesday 8th October 2019. Nearly 200 nominations were received for the 100 places. The Disability Power List 100 is compiled by an independent judging panel, chaired by Kate Nash OBE. Kate is the world’s leading authority in ‘Networkology’ – the science behind the growth of workplace networks and resource groups. In 2007 she was awarded an OBE for services to disabled people. In 2013 she was appointed Ambassador to Disability Rights UK.

Here’s what you’ll find in the press release about me:

Simon has lived with arthritis from the age of three and was diagnosed in his teens with Crohn’s disease and fibromyalgia. In 2012, Simon became one of the first young patients to be involved alongside healthcare professionals in shaping research. He has advocated locally, nationally and internationally ever since for people living with chronic conditions and their carers to be involved in research about their conditions. Inspired by his own experiences, Simon is determined to make improvements for other young people with chronic conditions. He has been involved in over 20 research studies and has contributed to the development of six international research recommendations to date. Simon shares his work and thoughts on his website and social media platforms, where he communicates with the wider patient community. At just 26 years old, Simon has already won numerous awards. In 2017, he was recognised internationally with the inaugural WEGO Health Award in the ‘Healthcare Collaborator: Patient’ category. In 2018, Simon was also appointed as an Associate Fellow of the Royal Commonwealth Society. Determined to make sure patient voices are heard at all levels, Simon is a Trustee of Fibromyalgia Action UK and RAiISE, and the President of the European Network of Fibromyalgia Associations (ENFA). He is currently finishing a PhD at the University of Leeds as an expert-by-experience researcher.

My life really has been transformed over the last seven years, since I first got involved in advocacy and research. I am indebted to so many people who have believed in me, and supported me on my journey. I hope that what I do inspires and empowers others to remember that their voice matters – and that they should shout their experiences from the rooftops!

“I am honoured to have be recognised in the Disability Power List 100 2019. It is a privilege to be able to utilise my personal experiences with ill health to inspire others, catalyse change, and work with communities around the world with the goal of making life easier for those living with chronic conditions like arthritis.”

Simon R. Stones – Patient Advocate and Consultant

This announcement has really lifted my spirits, after a particularly tough few months at home, which have taken their toll on me, physically and mentally. Receiving the email to say that I had been nominated and selected for the Disability Power List 100 2019 brought a smile and (another) tear to my eye, as a reminder of why I do what I do.

The full Shaw Trust Disability Power List 100 can be found on www.disabilitypower100.com.

To discuss my inclusion in the Disability Power List 100 2019 further, please email simon@simonstones.com.

About the Shaw Trust Disability Power 100 List

The Shaw Trust Power List is an annual publication of the 100 most influential disabled people in the UK. Since its inception four years ago, the publication has gone from strength to strength. Over the years it has allowed Shaw Trust to encourage businesses, employers and other organisations to reflect on opportunities available for disabled people. The list plays a vital role in providing much needed encouragement to the young and talented leaders of tomorrow, allowing them to see that aspiration and ambition can be fulfilled regardless of disability or impairment.

About the Shaw Trust

Shaw Trust is a charity helping to transform the lives of young people and adults across the UK and internationally. Their specialist services help people gain an education, enter work, develop their career, improve their wellbeing or rebuild their lives. As a charity, they add value to every service they deliver by investing back into the people and communities they support. Shaw Trust is one of the largest 25 charities in the UK. Comprising Shaw Trust, Prospects, Ixion and Shaw Education Trust, they use their 75 years’ combined experience to support people to develop their potential. By joining together, they are working to reach one goal: to help transform the lives of one million young people and adults each year. Their 3,500 staff and 1,000 volunteers provide joined-up services for government, local authorities, combined authorities, employers, stakeholders – including the Department for Work and Pensions, Education and Skills Funding Agency, clinical commissioning groups and NHS Trusts – and individuals. The Shaw Trust’s work focuses on seven business areas:

  • Employability
  • Learning and skills
  • Justice
  • Children’s services
  • Education
  • Charitable services and enterprise
  • Community health and wellbeing

For more information, please visit: http://www.shaw-trust.org.uk/.


  1. Very many congratulations Simon, so well deserved. I know you’ve been through a lot recently so I hope this has raised your spirits and things are getting better for you.

    Kindest regards,


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