OUCH(UK) - A bridge between cluster headache sufferers, medical and research communities

Could you briefly introduce OUCH (UK) for our readers who might not be familiar with your work?

OUCH(UK), the Organisation for the Understanding of Cluster Headache, is a charity dedicated to supporting people who live with Cluster Headache and their families. We are based in the UK and our work is entirely funded by membership fees and fundraising. Everything we do is focused on improving lives and giving sufferers the help and understanding they deserve.

What is the core mission of your charity?

Our mission is to provide support for sufferers and their families, raise awareness of Cluster Headache, and work with medical professionals and researchers to improve diagnosis, treatment and understanding of this devastating condition.

A key part of your work is raising awareness. Why is this so crucial for a condition like Cluster Headache?

Cluster Headache is often misunderstood or misdiagnosed, despite being one of the most painful conditions known. Awareness is key because it helps doctors and the public recognise symptoms more quickly, reducing delays in diagnosis. It also ends the isolation that many sufferers feel and encourages more research funding and better treatment options.

How do you work with medical professionals and researchers to improve the lives of patients?

We act as a bridge between sufferers and the medical and research communities. We work closely with healthcare professionals to promote accurate diagnosis and effective treatment.

We connect patients with researchers who are studying the condition, and we host conferences where sufferers can meet specialists, ask questions, and learn about new developments.

For a person who has just been diagnosed or is suspecting CH, what is the most important first step OUCH(UK) can help them with?

The first step is to contact us. We can offer immediate support through our Advice Line, email service and online forum. We listen, guide, and provide clear information about the condition and treatment options, helping people take control of their situation from day one.

Could you tell us about your advice line and what someone can expect when they reach out?

Our advice line is free to call on 0800 6696 824 or you can email adviceline@ouchuk.org.

You can leave a message at any time, and one of our trained advisers will get back to you. We offer guidance on medical support, treatments, employment rights, and benefits. Every conversation is confidential and tailored to the caller’s needs. Beyond medical advice, Cluster Headache has a huge impact on daily life.

What kind of support do you offer for challenges with employment, benefits, and family life?

We advise on who can help with employment rights and how to request reasonable adjustments from employers. We also provide resources to help families understand the condition so they can offer better support to their loved ones.

How can your online community help sufferers?

Our online forum and social media channels are a lifeline for many. They are safe, supportive spaces where people can connect with others who truly understand what they are going through. Members share experiences, tips, and encouragement, which can make a huge difference in coping with the condition.

What practical resources, like help with accessing oxygen therapy, can sufferers find through OUCH(UK)?

We offer detailed guides and downloads on how to access treatments such as oxygen therapy, along with links to helpful organisations and official publications. These resources give people the tools they need to navigate the healthcare system and get the right support.

How can our readers help OUCH(UK)?

The most direct way is by making a donation or becoming a member. Your support allows us to keep our Advice Line running, produce information materials, host events and work with the medical community.

Note: Any donations made will go directly to OUCH UK. MyClusters does not benefit financially from any donations made.

What is the most direct way for our readers to contribute financially?

Making a donation through our website is the quickest way. Every penny goes directly into funding our services for sufferers and their families.

What does becoming a member of OUCH(UK) entail, and how do those fees support your work?

Membership starts from £13 a year. Members receive regular updates, access to certain resources, and the knowledge that their contribution is directly funding support services, awareness campaigns and research connections. Membership fees give us the stability to plan ahead and maintain our work.

Who can become a member?

Anyone can join, sufferers, family members, healthcare professionals or simply people who want to help. The more members we have, the stronger our voice becomes.

For those who cannot contribute financially, what are some other meaningful ways they can get involved and support your mission?

You can help by taking part in fundraising events, sharing our posts on social media to raise awareness, volunteering at our conferences, or simply talking about Cluster Headache to help others understand them better.

Looking ahead, what are the biggest challenges for OUCH(UK), and what are your main goals for the coming year?

Our biggest challenges are securing sustainable funding, increasing awareness among healthcare professionals, and making sure everyone who needs treatment can access it. In the coming year, we aim to expand our outreach, improve resources for sufferers, and strengthen our role in supporting research.

Any other message?

Cluster headache is often called suicide headache for a reason, the pain is intense and life-altering. But you are not alone. We are here to listen, to support, and to fight alongside you for better recognition, treatment and understanding. Together we can make a real