Description
This is a fantastic opportunity to hear from experts in the field of narcolepsy. Join us as we cover everything from what narcolepsy is and isn’t, the causes and genetics behind this chronic, neurological condition and why it is not “just about sleep”.
Joint sessions with both patients and clinicians providing balance on the impacts of the condition will provide the perfect learning environment for anyone involved in caring for a person with narcolepsy, whether as a family member, funded carer, sleep specialist, G.P. or medical trainee.
We aim to increase awareness and understanding by talking about the patient journey, the variances in access to medication across the UK and the massive impact this debilitating disorder can have on the individual and people around them.
Prior to this event, Narcolepsy UK will have held their annual conference in Manchester where they will be presenting the findings from the largest survey of people with narcolepsy & their family & carers since 1986.
what will i learn?
Jointly organised with Narcolepsy UK, this afternoon meeting will give you an understanding of living with narcolepsy. We’ll learn more about it’s treatment and gain insight into the psychological and emotional wellbeing of people living with the disease, as well as current research and future developments.
key speakers
Yves Dauvilliers – Director of the Sleep Disorders Centre, Dept. of Neurology, Gui de Chauliac, Montpellier, France
Francesco Cappuccio – Professor of Cardiovascular Medicine, Warwick Medical School, University of Warwick. Joint Editor & Contributor to “Sleep, Health and Society, from aetiology to public health” 2nd Edition, 2018
Henry Nicholls – Trustee, Narcolepsy UK & author of Sleepyhead: Narcolepsy, Neuroscience and the Search for a Good Night, Profile Books, 2018
what are medicine and me meetings?
The Medicine and me meetings aim to provide an outline of current best practice and future updates of important conditions and to give direct voice to patients and their carers and enable them to discuss their concerns and reflections on the impact of diagnosis, investigation and management. Physicians and surgeons and indeed all Healthcare professionals continue to learn from and be inspired to greater efforts to improve care by hearing directly from patients
early bird price
Patients, their carers and family members attend for free. Medical students and trainee doctors/trainee Healthcare professionals can also attend Medicine and me meetings for free.
RSM member rates: £15 – £42
Non member rates: £35 – £70
* Following registration you will be contacted appropriately by email with your booking confirmation, feedback survey and attendance certificate. For full details of the RSM privacy policy, click here
*Programme is subject to change
agenda
12.30 pm
Registration, tea and coffee
12.55 pm
Welcome and introduction
Miss Kaji Sritharan, Associate Dean, Royal Society of Medicine
SESSION ONE
Mr Matt O’Neill, Trustee, Narcolepsy UK
1.00 pm
What is narcolepsy?
Professor Yves Dauvilliers, Montpellier, France
1.15 pm
Patient perspective – the patient journey
Ms Heather Korbey
1.25 pm
The genetics underlying narcolepsy
Birgitte Kornum, Associate Professor, Neuropharm and Genetics, University of Copenhagen
1.40 pm
Patient perspective – access to treatment
Ms Sam Harthen
1.50 pm
Panel discussion
SESSION TWO
Ms Helen Strongman, Trustee, Narcolepsy UK
2.05 pm
Effects of sleep deprivation
Professor Francesco Cappuccio, Warwick University
2.20 pm
Patient perspective – effects of sleep deprivation
Mr Henry Nicholls, Trustee, Narcolepsy UK
2.30 pm
Questions and answers
2.45 pm
Tea and coffee break
SESSION THREE
Dr Jane Blackwell, Research Fellow, School of Psychology, University of Leeds
3.05 pm
Patient perspective – automatic behaviours
Ms Teya Staniforth
3.15 pm
Managing automatic behaviours
Dr David O’Regan, Consultant, Psychiatry and Sleep Medicine, Guy’s and St Thomas’ NHS Foundation Trust
3.35 pm
Patient perspective – the psycho-social impact
Mr Shane Keenan
3.45 pm
Managing psycho-social aspects
Dr Charlie Tyack, Clinical Psychologist, Evelina London Children’s Hospital, Guy’s and St Thomas’ NHS Foundation Trust
4.05 pm
Questions and answers
SESSION FOUR
4.20 pm
The future of treatment and care
Professor Yves Dauvilliers
4.45 pm
Where to go for help
Mr Matt O’Neill
4.55 pm
Panel discussion
All speakers
5.30 pm
Close of meeting