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11/20/2017

St Thomas’ Hospital’s unique Centre for treating rare diseases opens

St Thomas’ Hospital’s new Rare Disease Centre opened its doors – on time - in November 2017, following the completion of an eight-month project by ME Construction.

In that time, ME Construction stripped out the entire first floor of St Thomas’ Hospital’s South Wing, Block 6A – leaving just the external walls – and then built the new Centre. The £1.1m project involved building four examination and consulting rooms, four treatment rooms, along with several utility rooms.

Barry Page, who was in charge of the project for ME Construction, explained that the company was also responsible for all the mechanical and electrical work related to the Centre. This involved installing a new air handling unit and connecting this to a number of fan cooling units.

“Much of the most complex work took place in the ceiling void – and, now that the ceiling has been constructed, it’s all nicely concealed!” he smiled.

The ‘Rare Disease and EB 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 that affect many organs in the body. According to the hospital, the centre brings together several specialist services in one place, saving time and improving patient experience.

The Centre caters for rare conditions including 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 affecting other parts of the body.

The hospital believes that having all appointments with different medical teams in one place means that clinics can run more efficiently and more patients can be seen on one day. The Centre includes a comfortable communal space for patients to wait between appointments - and a forest-themed feature wall.

One of the first patients at the Centre is James Dunn, from Liverpool, who has EB. 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 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. These rooms allow hospital staff to see entire families affected by the same genetic condition at once. There is also a state-of-the-art video conference suite which allows hospital clinicians to work more closely with patients’ local health services across the UK and discuss cases on an international level.

Dame Eileen Sills, Chief Nurse at Guy’s and St Thomas’ commented, “The new Centre will allow our talented team to take the way they deliver services to the next level and will be a game-changer for some patients. Providing the service in the right space and environment with all the facilities they need from an integrated team will make a real difference.”

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 doesn’t catch on fragile skin. We wanted to include the forest feature wall to show that we’re bringing the outside world in - seeing as some of these patients may not be able to go outside much, due to their conditions.

“There are a lot of common features between the conditions we’re treating at the Centre, so this will give medical teams an opportunity to learn from each other and we’re 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.”

For further details about this Centre, visit: http://www.guysandstthomas.nhs.uk/news-and-events/2017-news/november/20171102-rare-diseases-centre-opens.aspx

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