New centre to transform care of rare life-threatening illnesses

Friday 27 January 2017

Rare Diseases Centre

A new facility at St Thomas’ Hospital will act as a ‘one-stop shop’ for adults and children living with harmful rare conditions across the UK.

The opening of the Rare Disease Centre will mean that patients with genetic and skin conditions that also affect other organs in the body can be seen in one place by several specialists, saving time and improving patient experience. It will be the only facility of its kind in the UK to care for people of all ages.

The rare conditions include epidermolysis bullosa (EB), which causes fragile skin prone to recurrent painful blisters and sores, xeroderma pigmentosum (XP), a genetic skin disorder which means patients are not able to repair the damage ultraviolet light does to their skin therefore making them likely to develop skin cancer, and Bardet-Biedl syndrome (BBS), a disorder that can cause blindness and kidney disease.

Guy’s and St Thomas’ NHS Foundation Trust is a national Centre for these conditions, which means patients often travel from all over of the country for their appointments. Currently adults and children are seen in separate clinics and patients usually spend the day attending appointments with specialists around both the Guy’s and St Thomas’ sites, which can waste time.

Thanks to £1.8 million from Guy’s and St Thomas’ Charity, £250,000 from the charity DEBRA, £100,000 from the Four Acre Trust and £20,000 from the Photodermatology Charitable Trust, a designated space for this service is expected to open at St Thomas’ later this year.

Dr Robert Sarkany, Consultant Dermatologist at Guy’s and St Thomas’, said: “Patients with these conditions typically need to see up to six different specialists and a clinical psychologist due to the profound impact they have on their lives.

“These diseases pose similar needs and challenges for patients and clinicians so it made sense to create a space which accommodates them all, and this will lead to better co-working between medical teams. Housing all appointments in one place will make the clinics more efficient and mean we can see more patients on one day.”

Kieron Boyle, Chief Executive of Guy’s and St Thomas’ Charity, said: “The new Centre will feature UV-free areas for people with severe light sensitivity and large consultation rooms to see entire families affected by the same genetic condition at once. Changes like these, designed with patients and professionals at heart, can truly transform people’s experiences in hospital.

“The generous support from our donors and partner charities, plus additional backing from our grants scheme, means that facilities will finally measure up to the high quality of care that the Trust gives to people living with these complex and life-altering conditions.”

Sandra Webb is the Trust’s patient representative in the XP team and her 22-year-old son Alex has the condition. She said: “I think the new Centre will be the most wonderful thing to happen to patients. The new space will have a more relaxed, sociable atmosphere and housing all specialists in one area for the clinics will have a major benefit.

“Patients can feel stigmatised due to their conditions so it will make a big difference to them knowing that the Trust is introducing something special to improve their care.”

Part of the facility will be 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. It will also enable experts to share experiences of best practice with health teams around the world.

Dame Eileen Sills, Chief Nurse at Guy’s and St Thomas’, said: “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.”

Last updated: March 2022

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