National Assembly of Wales – Campaigning for equality in migraine treatments
On the 16th of September I attended an event at the Sennedd (National Assembly of Wales) in Cardiff.
I spoke to Assembly Members about the lack of funding for migraine treatments in Wales. I am in a unique position having received care in London and now having returned to Wales. I believe there isn’t much fuss being kicked up from Welsh patients because they are unaware of the fantastic care they could be receiving and the access they could be having to groundbreaking treatments. Many Welsh migraineurs I have spoken to, unaware of the facilities in London are resigned into believing that nothing more can be done for them. Their lives on hold forever.
To put it simply, instead of a straight forward GP referral to the National Hospital for Neurology and Neurosurgery as is the case in England, Welsh patients must make an application for funding which on speaking to fellow sufferers is often denied. I am currently embarking on this process myself. This seems absurd to me as migraine services in Wales are largely unspecialised and being smaller do not have access to the range of treatments the Neurology hospital in London can provide.
I had some great conversations at the Senedd and all the Assembly Members and Researchers I spoke to were eager to facilitate change. The very next day Cardiff and the Vale health board approved funding for BOTOX treatment for migraine despite seeing no use for the treatment two weeks earlier. It’s a huge step forward but a lot more still needs to be done.
The main problem we are faced with when discussing migraine is that it isn’t perceived to be a serious neurological condition. To gain empathy we must first gain people’s understanding. In view of this I created the image below, an artistic representation of a migraineur attempting to read whilst suffering visual aura. The visual representation was far more successful at communicating the condition than every conversation I had that day.
“No amount of empathy can dissolve the barrier between observation and experience” SERPENTINE GALLERY (2006) Hearing Voices Seeing Things London: Serpentine Gallery
Whilst I am still recovering from the event with one very angry brain, I feel incredibly privileged to have been given the opportunity to raise awareness of migraine in this way. As ever I am grateful to Migraine Action for all their hard work and campaigning.
Click here to read more about the event and to find out more about Migraine Action.
If you’d like to share your experience of migraine or you’d like to hear more please get in touch via the contact page.