Rare Diseases Centre opens at St Thomas’ Hospital

A new centre dedicated to patients with a number of complex rare genetic conditions has opened at St Thomas’ hospital.

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 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, xeroderma pigmentosum and Bardet-Biedl syndrome.

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 sites, meaning they have wasted time travelling between appointments.

The new centre provides a 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.

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.

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.

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.”

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.”