Countess of Wessex unveils rare disease centre at St Thomas’ hospital

Josh Salisbury (28 September, 2018) Health

The centre will treat patients with serious rare conditions under one roof

25485The Countess unveiled the centre on Tuesday alongside a patient

The Countess of Wessex unveiled a plaque to officially open the new Rare Diseases Centre at St Thomas’ Hospital this week.

Her Royal Highness Sophie – wife of Prince Edward – met the doctors and nurses at the centre as well as patients who’d benefited from the specialist care it provides.

The Countess was given a tour of the centre and was told about its specific design for patients with a number of complex rare genetic conditions.

Speaking as she unveiled the plaque, the Countess said: “It is a huge pleasure for me to open the Rare Diseases Centre.

“The testimonies we’ve heard from the patients with different rare conditions make it clear why this was so necessary.”

The royal family member met staff as she officially unveiled the centre on Tuesday

The rare conditions treated at the Centre include epidermolysis bullosa (EB) – a potentially fatal skin blistering condition which causes constant pain – and the genetic disorder xeroderma pigmentosum which affects the ability to repair skin damage caused by UV light.

The Countess is the patron of the national epidermolysis bullosa charity DEBRA, which contributed £250,000 for the new facility.

The centre is UV lighting free for patients, has furniture with curved edges so that it does not catch on fragile skin and colours chosen by visually impaired patients.

It also contains a comfortable communal space for patients to wait between appointments, while work is underway on a new sensory garden to be located outside the Centre.

Guy’s and St Thomas’ is a national centre for patients with XP, and is one of only two centres in the UK for adults with EB – meaning patients often travel from all over the country for their regular appointments.

By bringing several specialist services into one place, patients are saved from travelling to multiple people because complex conditions affect many parts of their body.

Before the facility opened, patients were seen in separate clinics around both the Guy’s and St Thomas’ sites.

The Countess is a patron of the DEBRA skin charity

Sir Hugh Taylor, Chairman of Guy’s and St Thomas’ NHS Foundation Trust, said: “We are incredibly proud to have this wonderful facility which is making a real difference to patients, many of whom are cared for by our clinical teams throughout their lives and have frequent hospital appointments.

“It was a real privilege to introduce The Countess to the hard-working staff based in the Rare Diseases Centre and the patients whose lives we are helping by listening to their needs and ensuring we are treating them in the best possible way.

“We are very grateful to the patients who were heavily involved in designing the Centre, the generous funders who made this possible and the dedicated staff who have worked hard for years to make the facility a reality and who now ensure provide excellent care to this special group of patients every day.

He added: “The Centre means that they now have somewhere permanent that they can call home.”

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.

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