01 SHREWSBURY MEETING - 6th April 2014

Exciting News About Shrewsbury Meeting!

Have you booked for the Shrewsbury meeting yet?  If you haven't you'll miss out on a golden opportunity to hear about the latest non-invasive treatment for cluster headache.  Electrocore – an American company – have brought out a device called Gammacore, a hand held device which the patient uses at the start of an attack and which aborts the attack very, very quickly.  It is safe to use, no side effects and is having great success in the trial being conducted by Professor Goadsby (our patron),  Dr Juana Marin (OUCH Honorary medical adviser) and Dr Nesbitt, at the Royal Free Hospital.

OUCH (UK) is delighted to announce that Electrocore will be present at the Shrewsbury meeting and will have information on the device.  Dr Marin is looking for volunteers for the trial and you can volunteer to take part at the meeting.  Gammacore is set to become a standard and very effective treatment in cluster headache, but OUCH needs members to take part in the trial because the trial results are vital to ensuring that this treatment is funded by the NHS.

To paraphrase the late John F Kennedy, 'Ask not what OUCH can do for you, ask what you can do for OUCH! (and cluster headache sufferers).

Our keynote speaker, Professor Goadsby, will give an update on what is new and in the pipe-line for cluster headache management together with other exciting news and Dr Juana Marin will talk about further developments in respect to the GammaCore in addition to the ongoing trial.

See you there!

OUCH(UK) Trustees

SHREWSBURY PROGRAMME OF EVENTS

09:00   Registration

09:30   Welcome and Opening Remarks

09:45   Pain SO Severe

Andi Barnet, Sandra McDowell & Scott Bruce OUCH (UK)

10:30   Ultra High Flow Oxygen Therapy Study

            Peter May OUCH (UK)

11:00   Comfort Break

11:15   Group Session 1

12:00   Cluster headaches

            Dr Brendan Davies

            University Hospital of North Staffordshire

13:00   Break for Lunch

14:00   Ouch (UK) and the Helpline

Andi Barnet & Sandra McDowell OUCH (UK)

14:15   Group Session 2

15:00   Refreshment Break

15:15   Cluster headaches

            Prof Peter Goadsby Kings College London

16:15   Question & Answer Session for panel

16:45   Closing Remarks

The manufacturers of gammaCore an innovative non-invasive treatment of acute cluster headaches will be available all day to discuss the treatment and trial.

The Trustees and officers will also be discussing the ongoing ultra high flow (demand valve) oxygen therapy trial.

GROUP SESSIONS

Group sessions or workshops are smaller forums that allow you to interact with fellow sufferers, supporters, OUCH Officers and Trustees and other specialists. At Shrewsbury we will be running 4 such Sessions which you are able to attend 2 (one in the morning and one in the afternoon). These sessions are entirely led by the participants. All you do is register for the ones you want to attend and gather round.

Helpline ‘Live’

Have a question about cluster headaches? Or a question for our helpline team, then this is the place to be. Supporters and sufferers alike can ask anything of our helpline time from how OUCH works to how do people work with Clusters.  This session will cover any and all questions that you might have, maybe you want to know how to go about getting a referral to a Headache Specialist Centre?

Neurosupport

Neurosupport are a charity that helps and supports anyone with a Neurological condition, here you can ask about what reasonable adjustments can and should be made to you in the workplace. Your rights as an employee with a neurological condition and Support with PIP and your rights to benefits if you cant work.

Treatments

Do you have specific questions about treatments? From Sumatripan to Frovatripan, Verapamil to Lithium. Do you feel that your Oxygen Therapy isn’t as effective as it could be. we will happily advise you in the right direction. Maybe you considering DBS or ONSI. Or maybe you want to consider Gamma-Core or Ultra High Flow Oxygen.

Remember there are no rights or wrongs with our condition. Bring your ideas along we are always happy to learn.

Supporters

This session will be led by OUCH’s small team of supporters. This group is an opportunity for the all important supporters to get together discuss coping strategies, chat to each other. An opportunity to meet others that go through the same.

All are welcome but the focus will be on what the supporter goes through.

Sue, its not a problem, you missed an excellent meeting. I'm sure we will be back in the area at some point.

Scott