About this event

  • Date and time Sat 27 Oct 2018 from 12:30pm to 5:30pm
  • Location Royal Society of Medicine
  • Organised by Medicine and Me, Narcolepsy UK

About the event

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.

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

 

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 

Agenda

View the programme

Session one

Miss Kaji Sritharan

Narcolepsy: Clinical aspects and therapeutic perspectives

Professor Yves Dauvilliers, Montpellier, France

Patient perspective - the patient journey

Ms Heather Korbey

The genetics underlying narcolepsy

Birgitte Kornum, Associate Professor, University of Copenhagen

Patient perspective - access to treatment

Mr Matt O’Neill, Trustee, Narcolepsy UK

Questions and answers

Session two

Ms Helen Strongman, Trustee, Narcolepsy UK

Effects of sleep deprivation

Professor Francesco Cappuccio, Warwick University

Patient perspective - effects of sleep deprivation

Mr Henry Nicholls, Trustee, Narcolepsy UK

Questions and answers
Tea and coffee break

Session three

Dr Jane Blackwell, Research Fellow, School of Psychology, University of Leeds

Patient perspective - automatic behaviours

Ms Teya Staniforth, Undergraduate Student, Durham University

Management of automatic behaviours

Dr David O’Regan, Consultant, Psychiatry and Sleep Medicine, Sleep Disorder Centre, Guy’s and St Thomas’ NHS Foundation Trust

Psychosocial effects of narcolepsy - a personal perspective

Mr Shane Keenan, Senior Emergency Nurse Practitioner, Oxfordshire

Managing psycho-social aspects

Dr Charlie Tyack, Clinical Psychologist, Evelina London Children’s Hospital

Questions and answers

Session four

The future of treatment and care

Professor Yves Dauvilliers

Where to go for help

Mr Matt O’Neill

Panel discussion

All speakers

Where to go for help

Mr Matt O’Neill

Panel discussion

All speakers

Close of meeting

Location

Royal Society of Medicine, 1 Wimpole St, Marylebone, London, W1G 0AE, United Kingdom