CaHRU attends opening of new Guillain-Barre charity national headquarters

Prof Niro Siriwardena was invited to attend the Guillain-Barré & Associated Inflammatory Neuropathies (GAIN) charity grand opening of their new premises, Glennys Sanders House, in Sleaford, Lincolnshire on 26 January 2019. The new centre was opened by Glennys Sanders herself who founded the charity from her house, supported by her husband, following being affected by the condition. Guillain-Barré Syndrome is a rare condition in which it is thought that the body’s immune system affects the nerves of the body, which in its most common acute form causes weakness, numbness and paralysis over 2-4 weeks resulting in those affected needing hospitalisation and intensive care, followed by a slow recovery back to health.

The new purpose built premises will enable the chief executive of the charity, Caroline Morrice, and the board of trustees to achieve their aim of helping and supporting people affected by Guillain-Barré and related syndromes resident in the UK and Ireland through a helpline and information provision. Prof Siriwardena presented progress on a study funded by the GAIN charity to the board of trustees, which aims to understand the experiences of recovery of those people affected by the condition. The study is in three phases and includes: a systematic review and synthesis of previous qualitative studies (none of which have taken place in the UK), an interview study of experiences and perceptions of recovery, and a questionnaire study exploring perceptions of what helps recovery following GBS and related conditions among people living in the UK or Ireland.

The researchers working on the project, led by Professor Siriwardena, include Drs Joseph Akanuwe, Jennifer Jackson and Ffion Curtis, with Ms Despina Laparidou, Ms Victoria Ellis-Vowles and Prof Tim Hodgson. The study, due to be completed by late summer 2019, will help the researchers and charity understand how people can be best supported to recover from the condition.

By Prof A N Siriwardena

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