The Yorkshire and Humber Academic Health Science Network (AHSN) would like to invite a small number of cluster headache patients who have personally used a gammaCore device to take part in an NHS England project.  The aim of the project is to help improve patient experience when introducing new innovations into the NHS, what can we learn, and what can we improve upon?  

The main aim of the project is to increase patient benefit by finding out through an interview how/where patient experience and insight can help improve the way future products or services are delivered in the NHS.  Asking for patient insight is very important to this project as we want to collect your real-life experiences and ideas… Read More

We have been advised by the NHS National Patient Safety Group to remind you of safe usage of oxygen during any power cuts, which are likely to happen this winter.  

DO NOT USE CANDLES OR ANY NAKED FLAME DURING POWER CUTS.  

Oxygen is absorbed into the skin and clothing and even if you have stopped using the oxygen, you are still at risk after switching it off, even if you go into another room.  We suggest that you keep a torch and spare batteries near your oxygen cylinder and equipment, or a battery powered lantern, in case of a power cut.   

Your oxygen supplier will be contacting you with a similar message and may have already done so. 

We are fortunate that the… Read More

Unfortunately we no longer have a Benefits and Employment advisor but if you need assistance there are some very good organisations that can help:

The Brain Charity - https://www.thebraincharity.org.uk/

Disability Rights UK - https://www.disabilityrightsuk.org/

Benefits and Work - https://www.benefitsandwork.co.uk/

Age Concern - https://www.ageuk.org.uk/

Please note that recruitment for this study is now complete.

Researchers at Staffordshire University are undertaking a study to explore people's experiences of 'Living with Chronic Pain in Early Adulthood'. They are looking for adults based in the UK, aged between 18-30 who experience chronic pain to take part in an interview via Microsoft Teams, which will last approximately 1 hour.

If you would like to find out more, please see the information leaflet linked here: https://staffordshire.qualtrics.com/jfe/form/SV_9YpmKKgNgc3ZU46

If you would like to take part, please complete the content form and short demographics survey here: https://staffordshire.qualtrics.com/jfe/form/SV_3rDwJ5daU9Nn3Vk

If you… Read More

About the Study

We are a team of physicians and researchers at King’s College London studying the management of headaches within our healthcare system. We hope to evaluate patient experiences with headaches in the NHS at every level, from GP appointments to pharmacy and hospital visits. Our objective is to put together an accurate representation of the clinical headache pathway and identify pain-points and inefficiencies, to propose a system-wide redesign of the pathway more capable of adopting digital tools and technologies that can improve patient care.

Who can take part?

We are looking for individuals who have attended the healthcare system in any capacity for their headaches, such as through general… Read More

NOW CANCELLED:   There have not been enough registrations for this event to go ahead and we are very sorry that we've had to cancel it for the time being.  We are all disappointed but there have been a number of factors counting against a face-to-face conference at the moment, including Covid, public transport and cost of living crises.  We will be getting in touch with all those who have booked and will be processing refunds soon.

But please watch out - we will be arranging an on-line conference again soon.

For the first time since the pandemic began, we are pleased to have been able to put together the first physical face to face conference for cluster headaches! 

Our team have been… Read More

Evaluating the Treatment of Cluster Headache with Oxygen: A population-based study (ETCHO-1)

OUCH (UK) is pleased to be collaborating with the headache research team at King’s College London. The study above will expand to Scotland which will explore and develop our understanding of cluster headache.

This will be a questionnaire study with a telephone interview follow up. We endeavour that this study will help us begin to explore who are the cluster headache sufferers who find oxygen a useful treatment.

Oxygen users in the Scotland home oxygen region should look out for a letter asking if they would like to find out more about this study and if they want to be involved.

This research is… Read More

The National Institute for Health Research (NIHR) Maudsley Biomedical Research Centre has just released a report about its work on non invasive nerve stimulation for cluster headaches. This involved use of the gammaCore hand held device produced by the US company electroCore.  The research was conducted with OUCH's patron and chairman Professor Peter Goadsby and in collaboration with OUCH (UK).  For more information, please click the button below:

FIND OUT MORE

Last year, the Board of Trustees chose Corin Ridout to receive this award. Corin regularly raised awareness and funds on behalf of his brother Glen, a cluster headache sufferer. Sadly, Glen passed away not long before Corin's virtual London Marathon but he was determined to carry on in Glen's memory. We felt that this was a wonderful example of going the extra mile that we've always associated with the Mike Pollock award and that he was a very deserving recipient.

The award was created in honour of our late, much missed chairman, Mike, who helped so very many cluster headache sufferers. It is meant to go to a CH hero in the UK - someone who has shown outstanding and compassionate support to cluster headache sufferers.

The… Read More