Supporting patients and families
New Rare Disease Centre offers hope to patients from across the UK
New Rare Disease Centre will transform care for rare conditions
Patients from across the UK with rare conditions can now be treated in a brand new facility at St Thomas’, thanks to donations
Thanks to funding of £1.8 million from Guy’s and St Thomas’ Charity, plus support from the charity DEBRA, the Four Acre Trust and the Photodermatology Charitable Trust, this designated space for both adults and children is now open at St Thomas.
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.
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.’
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.
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.’
Lead photo: James Dunn with parents Lesley and Kenny Dunn, Prof Jemima Mellerio and clinical nurse specialist Chris Bloor