Trust team raises awareness of devastating condition in Parliament

Last week members of Guy’s and St Thomas’ Headache Centre visited the Houses of Parliament to raise awareness of a severe neurological condition known as cluster headache.

The Cluster Headache Awareness Event was organised by the team and the charity OUCH (the Organisation for the Understanding of Cluster Headache) with the aim of improving understanding of this devastating headache disorder, which is described as the worst imaginable pain experienced by man.

The event was hosted by Mr Jim Fitzpatrick MP, Chair of the All-Party Parliamentary Group on Primary Headache Disorders, with more than 100 patients, supporters and healthcare professionals attending, along with representatives from other charities and pharmaceutical companies. 

During the event Dr Giorgio Lambru, Lead Consultant of the Headache Centre at Guy’s and St Thomas’, and Dr Anna Andreou, Director of Headache Research at the Headache Centre, explained the ways that the Centre helps patients and highlighted how the Trust is promoting research to improve the lives of people with the condition.

Our Headache Centre is the only UK specialist centre to offer a fast-track one-stop clinic for cluster headache patients who struggle to get appropriate, timely treatment. Most patients are seen within two weeks of referral and they are offered a comprehensive diagnostic clinic, as well as appropriate non-invasive or minimally invasive treatments on the day they attend the clinic.

The Centre works closely with the Trust’s Pain Management Centre which means that patients can benefit from further specialised treatments if needed.

Dr Lambru said: “We were honoured to organise this important event. Cluster headache can be devastating to patients, occurring up to eight times a day in some, with attacks lasting as long as three hours. The episodes are characterised by excruciating pain behind one eye, pronounced restlessness and one-sided facial symptoms including watering and redness of the eye.

“Due to lack of effective pain relief treatments, the condition has previously been referred to as suicide headache because it pushed patients to their limit. There are now more treatments available to help patients cope with the disorder but more awareness is needed to help improve rates of diagnosis and the time it takes for patients to be referred to specialist headache centres, like the one at St Thomas’. We hope that the event will lead to more patients throughout the country getting the treatment and support they need.”

The event was endorsed by the European Headache Federation and the European Headache Alliance.