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ELCResearch - a new mailing list for research and coproduction

 I founded Chronic Illness Inclusion (CII), an advocacy organisation for people living with energy limiting conditions, chronic illness and pain. CII began life as a funed research project in 2017. From the start, the CII Project mailing list was about building a community of people living with chronic illness and chronic pain who didn't feel represented by existing disability or social justice advocacy organisations. Over the years I, and others, ran various surveys and consultations that gave subscribers the opportunity to have their voice heard on issues such as social policy, disability rights and healthcare services. The level of engagement and participation in research from subscribers to the CII Project list was amazing. Sadly, CII was not viable as a vehicle to continue the research and advocacy work that was at the heart of the initial research project. It was too hard to get funding. Most of all, it was not sustainable for me, as someone living with chronic illness, to le
Recent posts

What are energy-limiting conditions? An introduction to chronic illness at work

What are energy limiting conditions? A guide for employees and their managers is a new resource, produced for Astriid charity. I hope it will be a gamechanger for unlocking conversations about health, disability and work, and lead to more people with chronic illness getting the support they need at work. I've lived with an energy limiting condition (ELC) for decades, but for a long time, I didn’t have the language to describe my needs and ask for adjustments that could have helped me take part in life.  I didn't even know if I was allowed to do so, because I didn't see people like me in representations of disability or in the landscape of disability rights.  The work I did with Chronic Illness Inclusion (CII) taught me that many of us feel the same. The gap between our day-to-day reality and society's understanding of chronic illness as a form of disability is vast. Many people report that this conceptual gap, and the lack of understanding from everyone - from friends

Work and Health Expert Research Collaborative

I am delighted to part of a 10 month network of research experts in the area of work and health. My role is ensuring that disabled people and those with health conditions are involved in the planning and prioritising of future research, alongside SpeakUp Rotherham and Breakthrough UK.  The project is led by Prof Adam Whitworth of the University of Strathclyde and funded by the National Institute of Health Research. The Work and Health Development Award allows us to focus on identifying future research & policy priorities and innovative possibilities in the UK work-health landscape. Employers, policy stakeholders, disabled people & the general public are at its heart. And a stellar team of diverse expertise from   University of Strathclyde, King's College London, The University of Sheffield and  University of East Anglia are coming together to address a key challenge: the 2.5 million people excluded from the UK labour market due to ill health.