A Royston man who has been fighting the debilitating effects of Lyme disease for 30 years, is joining protesters in London this week to get the condition in the national spotlight.
Richard Brooke-Powell will join other Lyme disease patients for a rally outside the Department of Health in Whitehall on Wednesday which will coincide with similar protests taking place around the world.
Campaigners say the Department of Health is neglecting patients because they ignore the science of Lyme borreliosis, an infection which can be caught from the bite of a tick. They say the tests relied upon by the NHS miss many cases and as a result, patients are forced to pay for private tests and treatment or risk developing severe and chronic illness.
If caught early on, the disease can often be treated effectively but if it is not, there is a risk people can develop severe and long-lasting symptoms such as pain and swelling in the joints and problems affecting the nervous system and heart.
Richard, who contracted the disease after being bitten on a golf course in America in 1984, has been struggling with the effects of it ever since. The 67-year-old, who worked as a gardener at Hanbury Manor, first came down with flu before getting prolonged “crushing” headaches which he has endured up until a year ago.
After researching online in 2004 and realising what he had, he finally got a formal private diagnosis in 2011. He now takes herbal supplements as he cannot afford to be treated privately and cannot get treatment on the NHS as the tests came back negative.
“It’s just a terrible disease, it really is,” he said. “My feet are like walking on pebbles. I have cognitive problems and can’t remember names. It affects my back and my legs. It’s very hard because I’m not getting any treatment.”
Richard hopes the government will take now take note. “It affects many people and they are being misdiagnosed,” he added.