It was a real pleasure to speak at the Association for Respiratory Technology & Physiology annual conference yesterday, a first for Narcolepsy UK.
I presented a section on our forthcoming Charter, some of the results from our recent survey and had some fantastic feedback and interest from genuinely interested people across different departments. Thanks to Trish Matharu from the Respiratory Physiology and Sleep Department at University Hospital Warwick & Coventry for suggesting that we speak at the conference (after hearing me talk in Warwick back in the summer) & the Board of the ARTP for their hospitality.
Raising awareness is always challenging but here is a reminder that this particular strand of engagement started back in 2013, five years ago.
Back in 2013, Narcolepsy UK were approached by Warwick University to provide our views on living with narcolepsy in the UK and the value and role of pharmaceuticals/other possible treatments in the management of the condition.
The Medicated Sleep and Wakefulness Project was a social scientific investigation of developments and debates regarding the role of sleep medication in Britain. The research examined issues regarding the medical, social and personal management of sleep problems with particular reference to the roles, meanings and uses of pharmaceuticals in everyday/night life. This involved multiple methods, including documentary research, interviews, and focus groups with key stakeholders in the field. Eighteen interviews were held with scientists and clinicians, pharmacologists, General Practitioners and representatives of patient organisations. A total of 99 people across 23 focus groups also took part in the study.
The research project was funded by the Economic and Social Research Council (ESRC) and ran from April 2011 to May 2014. It was based in the Department of Sociology at the University of Warwick, and undertaken in conjunction with Royal Holloway, University of London and Kings College London. The research was led by Professor Jonathan Gabe. Other members of the research team were Professor Simon Williams, Professor John Abraham and Dr. Catherine Coveney.
Matt O’Neill, Chair, Narcolepsy UK subsequently attended the end of project conference and took part in the closing panel discussion and secured an invite for Jane Blackwell, to present posters, who many of you will know from NUK conferences as she was at the time undertaking a doctoral research project on narcolepsy & children for which NUK provided a small amount of funding.
Matt has maintained the relationship with Warwick University, speaking to medical students about narcolepsy at Warwick Medical School as part of their ten week Sleep Medicine Student Selected Component in 2015. This course is scheduled to run again in the 2018/19 academic year and Matt will again be presenting to students as part of the only specialised sleep module available to university medical students in the UK.
Matt and fellow Trustee, Henry Nicholls also contributed the final chapter to Sleep, Health, and Society, Second Edition and Matt will be attending the formal book launch in Warwick on Thursday, 7th June. If anyone is interested in attending, please follow the attached link - https://www.narcolepsy.org.uk/civicrm/event/info?reset=1&id=106