Experiencing Fatigue – Dr Anna Kuppuswamy

In partnership with Cassandra Hugill from Wellcome Centre for Human Neuroimaging, Dr Anna Kuppuswamy who runs the fatigue research group in UCL Queen Square, has been awarded £87,693 to fund a significant piece of engagement work.

The enrichment fund project is aimed at capturing the experience of fatigue in stroke survivors using tools other than the written word which would meaningfully engage patients in science and research.

The multisensory nature of fatigue is widely misunderstood by those surrounding the patient – including health practitioners, carers and family members. Our vision is to have these groups recognise fatigue as a debilitating condition in its own right and to treat it accordingly. Our aim is to enable stroke survivors with fatigue to communicate their experiences through multi-sensory, immersive installation providing an insight into their lives.

Like many conditions that are visibly apparent, the debilitating realities of fatigue need to be recognised within both work and home life. Driven by patients and supported by our research, this immersive installation will help acknowledge and validate fatigue as a significant inhibitor to daily life, while gaining greater visibility for this significant problem.

Research participants, artists and researchers will co-produce the installation, curated by a Project Manager. This process will empower stroke survivors involved by helping their voices to be heard by those influencing their daily life. Talking about their condition in a group will also give rise to a shared sense of empathy. The week-long London-based installation will have focused events to engage target audiences.

This project will achieve:

• An immersive installation that recognises and conveys the limitations this condition imposes.
• Empowered our participants to speak openly about their condition with colleagues and loved ones.
• Engaging and informative resources around the realities of living with fatigue to help people diagnosed in the future.
• An extended library of experience of fatigue from diverse patients to infer future research.

To learn more about this project please go to Experiencing Fatigue.

Awarded Jan 2019