Posted on Thursday 2 November 2017
Sophie Brown at the new Rare Diseases Centre
Sophie Brown, who has epidermolysis bullosa, was one of the first patients to be seen at the new Rare Diseases Centre.
A new centre dedicated to patients with a number of complex rare genetic conditions has welcomed its first patients this week.
The Rare Diseases Centre at St Thomas’ Hospital 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 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.
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.”
Sophie Brown, a 28-year-old make-up artist from Essex who also has EB, added: “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.”
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.
“Patients have been involved in every aspect of the design from the lighting and colours used in the centre to the layout and choice of furniture, as we have furniture with curved edges so that it does not catch on fragile skin. We wanted to include the forest feature wall to show that we are bringing the outside world in, seeing as some of these patients may not be able to go outside very much due to their conditions.
“There are a lot of common features between the conditions we are treating at the centre so this will give medical teams an opportunity to learn from each other and we are excited to be able to work more closely together to deliver the best possible care.”
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.
Kieron Boyle, Chief Executive of Guy’s and St Thomas’ Charity, 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.”