Conference 2017 – The best ever?

7-8 October 2017 saw around 150 delegates gather in the splendidly light and airy surroundings of the grandstand at Newbury Racecourse for our 2017 Annual Conference.

“Thank you everyone, it was our first and won’t be the last!!”

The full one-and-a-half day programme was opened by Narcolepsy UK Chair Matt O’Neill, who summarised the main achievements of the charity over the past year as well as, more importantly, announcing our major initiative for the coming year: the development and implementation of a “Narcolepsy Charter”. Matt explained that we will be consulting with all our stakeholders as we take this project forward, with the launch event already planned to take place at the Royal School of Medicine in October 2018. As Matt emphasised, if you have any involvement with narcolepsy, whether as a person with narcolepsy, a parent, a carer or a healthcare professional, we want to know your views. If we are to to make the Charter truly beneficial to our community, we need you to get involved and help us drive the project forward: “It’s up to you!”

In our conference programme, we always try to include at least one keynote presentation by a leading clinician, and this year we were pleased to welcome Dr Guy Leschziner, Consultant Neurologist and Head of the Sleep Disorders Centre at Guy’s and St Thomas’ Hospital in London. Dr Leschziner gave an insight into the difficulties involved in the diagnosis of narcolepsy and encouraged us to redouble our efforts to get our message across to GPs and to increase their awareness of this rare condition. A wide-ranging Q&A session followed in which Dr Leschziner kindly addressed numerous questions, both within the scope of his presentation and on other aspects of narcolepsy.

After lunch, Dr David O’Regan, Consultant in Psychiatry and Sleep Medicine at the Insomnia Clinic (University College London) and the Sleep Disorders Centre of Guy’s and St Thomas’, outlined how Cognitive Behavioural Therapy can help as an adjunct to medical treatments in patients with narcolepsy. In a very practical talk, Dr O’Regan demonstrated a number of CBT techniques that people with narcolepsy can try alongside their medical treatments. Again, a lively Q&A session followed.

All of Saturday’s presentations were video-recorded, and we intend to upload them to our YouTube channel in the near future.  The presentations were also streamed live on Facebook so that they could be followed by anyone unable to be present in person.

Alongside the main presentations, delegates had the opportunity to attend 1-to-1 sessions with our Benefits Advisor Rebecca Malone, to discuss fundraising ideas with Christine Allen and to talk to Volunteer Coordinator Liam Sloan.

Another important break-out session gave young people an opportunity to talk informally – and privately, with no parents present – with Deputy Chair Ed Coates and Operations Manager Nicola Rule about any concerns they have about their own wellbeing.

A group photograph brought Saturday’s formal proceedings to a close, but many conversations continued into the evening.

A new aspect of conference this year was the presence of representatives of three pharmaceutical companies with interests in the treatment of narcolepsy. Lincoln Medical/Bioprojet Pharma is the supplier of pitolisant, the recently approved H3 receptor antagonist that may be a better alternative to modafinil. UCBCares is a dedicated service providing support to patients and healthcare professionals in relation to products supplied by UCB, including Xyrem®. Flamel/Avadel is currently recruiting patients for a clinical trial of its once-a-night extended release formulation of sodium oxybate, named FT218. We believe all three were pleased to have attended the conference, and we were certainly pleased to welcome them.

“An amazing day, very informative and professionally run throughout.  The speakers were so knowledgeable and were happy to answer questions, a huge success all round!  Well done everyone who organised, spoke and attended.”

Sunday morning saw two presentations by Narcolepsy UK Trustees Henry Nicholls and Ed Coates, who both drew on their professional experience to deliver contrasting but equally informative sessions. Henry, originally a bioscientist and for many years a science writer and journalist, summarised current thinking on the causes of narcolepsy and the neurological basis for its symptoms, as well as describing the (sometimes literally) mind-boggling research that is being carried out to try to understand the condition fully. We are delighted that Henry’s book on these subjects will be published in 2018. Ed, whose career has been spent in Social Services, particularly working with children, gave his always well-received presentation on the emotional impact of narcolepsy.

Meanwhile, Rebecca fielded more enquiries relating to benefits, and Nicola facilitated another session on mental wellbeing, this time for parents/carers with no young people present.

Conference concluded with another opportunity for delegates and organisers to chat informally.

All in all, we believe our 2017 conference was a great success, with more than one attendee commenting that it was the best yet.

“Definitely the best one I’ve ever been to! Well done to all. Lovely to see so many friends.”

“Thank you to everyone at Narcolepsy UK for organising another great conference. Really enjoyed it and it was nice to see some familiar faces and meet some new people.”