Nov 03, 2017
A new centre dedicated to patients with rare health conditions has welcomed its first patients this week.
The Rare Diseases Centre at St Thomas’ Hospital, which we supported with £1.8 million of funding from public donations, is the first of its kind in the UK to provide a space designed for adults and children with life-long genetic and skin conditions that affect many organs in the body. The new centre brings together several specialists services in one place, saving time and improving patient experience. The rare conditions include epidermolysis bullosa (EB), which causes fragile skin prone to recurrent painful blisters and sores, xeroderma pigmentosum (XP), a genetic skin disorder which means patients are not able to repair the damage ultraviolet light does to their skin therefore making them likely to develop skin cancer, and Bardet-Biedl syndrome (BBS), a disorder that can cause blindness and kidney disease.
While Guy’s and St Thomas’ is an existing national centre for patients with these conditions, previously patients have been seen in separate clinics around both the Guy’s and St Thomas’ sites, which has meant that they have wasted time travelling between appointments. The new centre provides a welcoming space to accommodate this group of patients in a suitable environment for their needs. Housing all appointments with different medical team in one place also means the clinics can run more efficiently and more patients can be seen on one day.
James Dunn, 24 from Liverpool, has EB and was one of the first patients to be seen at the Rare Diseases Centre. He said: “The centre is very bright, modern and spacious. I love the communal area – it’s more open and sociable now. It’s brilliant that, for the first time, we have our own space and everything we need is done here without moving around – it makes life much easier.”
Kieron Boyle, our Chief Executive, said: “This unique new centre will transform the way people with complex conditions receive hospital care. It’s been made possible by the incredible generosity of the public, and will make a lasting difference to the quality of care delivered to adults and children with rare conditions across the UK.”