22 June 2022
For the past 18 years, Tom, from Crayford, has been on service with Sciensus receiving medicines for Fabry disease. Fabry disease is a genetic condition that causes a fatty substance to build up within cells and can lead to conditions including heart attacks, kidney damage and strokes. Tom has infusions fortnightly, administered at home by a Sciensus nurse, and says that after almost two decades he highly recommends the service.
Tom went straight onto infusions when he was diagnosed 18 years ago, and the majority of his treatment – including temperature, blood pressure, and oxygen level tests alongside his infusions – is done at home.
He still has to go to hospital twice a year for infusions to check there are no adverse reactions, which involves travelling from his home to the Royal Free Hospital in Hampstead. After his infusions are given the OK, he is again signed off to have treatment at home.
“When I go to the hospital,” he says, “they inject dye into one arm, and they have to take it out four hours later, almost to the minute, from the other arm. So, even if I haven’t got to see the consultant, it’s four hours before I can get the other arm seen. It takes all day.
“I get a train to London, then the Tube. It’s a long walk up the hill to the hospital, carrying a sample bottle. It gets very heavy.”
Having treatment at home avoids the need for this journey to be made too often, Tom says, and takes around 40 minutes rather than all day.
A personal service
He explains that his treatment is always administered on a Monday, as this is most convenient for his family. “We prefer it on Mondays,” he says. “It gives us the rest of the week, without having to worry about being anywhere.”
“After 18 years, I would recommend Sciensus to anyone. It is spot on. It runs very smoothly.”
He adds: “Treatment-wise, I find Sciensus efficient and understanding. They’re willing to give you all that you require. After 18 years that’s pretty good, I think.”
