Your health – Rare Diseases Centre, St Thomas’ Hospital

Patients with rare genetic skin diseases have been treated for the first time at a new complex at St Thomas’ Hospital.

The Rare Diseases Centre 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 which affect many organs in the body. The new centre brings together several specialist 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 disorder affecting patients’ ability to repair the damage caused by ultraviolet (UV) light, significantly increasing their risk of skin cancer and eye disease, and Bardet-Biedl syndrome (BBS), a disorder that can cause blindness and kidney disease as well as affect other parts of the body.

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. Having all appointments with different medical teams in one place also means the clinics can run more efficiently and more patients can be seen on one day.

It includes a comfortable communal space for patients to wait between appointments and a forest themed feature wall.

Other features of the new centre include UV-free areas for people with XP, and large consultation rooms to see entire families affected by the same genetic condition at once. There is a state-of-the-art video conference suite which will allow clinicians at the Trust to work more closely with patients’ local health services across the UK and discuss cases on an international level.

Professor Jemima Mellerio, consultant dermatologist at Guy’s and St Thomas’, said: “We wanted to design a centre that, instead of feeling clinical, created a relaxing, healing environment for people that come here.

“It is very important for these patients to have somewhere permanent that they can call home because they have frequent hospital appointments. So far everyone seems delighted with it.”

The Rare Diseases Centre has been funded by Guy’s and St Thomas’ Charity, the charity DEBRA, the Four Acre Trust and the Photodermatology Charitable Trust. The first patients at St Thomas’ Hospital’s Rare Disease Centre have praised the care they are receiving there.

Sophie Brown, a 28-year-old make-up artist from Essex, who also has EB, said: “It feels special that the centre was created with us in mind. It’s lovely to know that I’ll always come back here for appointments from now on, rather than going to other spaces around the Trust. I love the forest wall which looks very enchanted.”

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.”

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