November 2023: Engage Britain has now merged with Demos. You can still find all our work from 2019-2023 here, but to get in touch or find out about our new ventures, go to

"It's such a rare condition. It's so misunderstood. There's not enough awareness, even amongst the medical profession that I genuinely... the only time I feel heard as a patient is when I go to London and I pay the doctor to listen."