OUCH(UK) Organisation for the Understanding of Cluster Headache

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News

The National Migraine Centre invited OUCH(UK)  to take part in a Podcast on cluster headache.  This is one of a series of podcasts done by NMC covering several different types of headache condition.  The podcast starts with discussion on the particular condition - CH in our case - between health professionals and Charlotte Burr of NMC. 

Then member Val Hobbs is asked about what it is like to experience CH and how the condition can affect everyday life.  You can listen below or go to the NMC website to also hear more podcasts. For the CH one,  scroll through the list of podcasts and CH is in No. 3 of Series 2 .  It might be useful to...

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Saturday 11th July, 2020 at the Liverpool Medical Institution

The Trustees of OUCH (UK) are delighted to announce that we are returning to Liverpool for our 2020 summer conference. This will take place on Saturday 11th July at the Liverpool Medical Institution, 114 Mount Pleasant, Liverpool, L3 5SR.

CONFIRMED SPEAKERS FOR THE EVENT:

  • Professor Peter Goadsby, Professor of Neurology, King's College Hospital, London, patron and chair of OUCH (UK)
  • Dr Anish Bahra, Consultant Neurologist, St Bartholomew’s Hospital, London
  • OUCH (UK) Trustees and Officers

The full list of speakers will be announced soon.

If you are a member of OUCH you qualify for a 40% discount...

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As part of OUCH UK continuing support, we are pleased to announce the Official OUCH UK YouTube channel.

This channel will be available 24/7 with videos on various subjects across the board of Cluster Headaches.

We all appreciate the support you give to this community, and moving forward, we hope this is another avenue that you will support.

Can you please all click on the link below, subscribe to the channel and turn on notifications, and you will be informed every time a new video is uploaded.

...

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We're very happy to announce that the winner of this year's Mike Pollock award is Toryn Ahmet Tucker. A most deserving winner, well done everyone!

This young man has really got behind the cause. He's not only a fantastic support to his mum, Clare, who is a CH sufferer but he has also produced a brilliant YouTube video which has been shared throughout the Facebook community and beyond, raising a massive amount of awareness for the condition. If you haven't yet seen it, here's the link:

https://www.youtube.com/watch?v=U7JfqML1pS4

Many congratulations to you, Toryn and thank you. Mike would be delighted for you to receive this award in his name.

The latest edition of our magazine CHit CHat has been published! Click the buttons below for the current and back issues.

Latest CHit CHat

Read Back Issues

Please note:  No further volunteers are required for this study, owing to the high number of responses received.  Thanks to all who got in touch.  5/6/19

This is a new study looking at first-hand experiences of people living with either chronic or episodic cluster headache in the UK.  Its aim is to get a better understanding of the views of those living with the condition to find out how care and support might be improved in the future.

It will involve a short telephone interview of approximately one hour. To take part, you must be aged between 18 and 65 years old, resident in the UK and be living with either chronic or episodic cluster headache. The study is being conducted by a researcher at the University of...

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Sunday 30th June, 2019 - Shepherds Hall, St Thomas' Hospital Campus, London, SE1 7EH

OUCH(UK) are pleased to be able to return to London to present a packed event specifically for cluster headache sufferers and supporters.

As usual, the event will be a mixture of talks by Europe's best Neurologists, information sessions and an opportunity to meet and talk with other cluster headache sufferers to share experiences and make and meet new friends.

Our medical speakers will take you on a journey through cluster headache and other primary headache disorders and tell you about the current treatments available, as well as what studies and trials are on-going and what the...

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Look out for the OUCH(UK) online shop selling products to promote awareness of cluster headache. All sales help the charity to support sufferers.

Just click Shop at the top of the OUCH(UK) website to find these eye-catching items and more:

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Mike PollockIn 2017 we created a new award to honour our late chairman, Mike Pollock. We wanted to do something special in Mike's name and so now, each year, the award will go to a CH hero in the UK - someone who has shown outstanding and compassionate support to cluster headache sufferers.

There was never any limit to the help Mike offered to sufferers; he always went the extra mile, never ceasing to have the well-being of sufferers in mind - so we thought he would approve of the nature of this award.

The first recipient of the new award was Darren Hamilton,...

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We have recently been informed that there is a production problem with the Imigran injections [subcutaneous sumatriiptan] made by GSK and that they will not be back in full production until January 2019. 

PLEASE NOTE: SUN PHARMA make the generic form of the injections under the name Sun Pharma - subcutaneous sumatriptan injections.  We are informed by the relevant section of Department of Health that Sun Pharma have plentiful supplies to take up the shortfall on the GSK injections.

As long as your prescription has the words 'subcutaneous sumatriptan' on it, your pharmacist can supply either GSK or Sun injections.

August 2018

Yet another first for OUCH (UK), we were invited to attend the first ever Global Patient Advocacy Summit at the 18th Congress of the International Headache Society in Vancouver and Trustee Scott Bruce is representing OUCH along with representatives of 48 other patient organisations from all over the world.  The IHS is an organisation of headache neurologists and health professionals and they produce the internationally recognised headache guide for health professionals.  This is the first time that patient advocate groups have been invited to attend the IHS congress, and represents recognition of the valuable part that the various groups play in supporting patients in finding diagnosis and treatment.

You can read the press...

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Dear Member
 
We need your help and support to ensure that demand valve oxygen therapy, a cause close to the heart of our late chairman, Mike Pollock,  becomes a standard oxygen therapy for cluster headache.  This is a very fast-acting, safe and cost efficient method of oxygen therapy, using a mouthpiece similar to that used in entinox therapy.  The demand valve opens as you inhale and shuts off the oxygen as you exhale; it is not blasting out at 15 litres a minute all the time.  A cylinder can last several times longer using DVO as opposed to the standard high flow oxygen.  
 
At the present time the DVO is approved for NHS prescription, but as it is termed an optional to the oxygen supply contract, the oxygen...

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