Supporting patients and families
New Rare Disease Centre offers hope to patients from across the UK
Patients with rare conditions will soon be treated in a brand new facility at St Thomas’, thanks to donations.
Guy’s and St Thomas’ NHS Foundation Trust is a national Centre for genetic and skin conditions that also affect other organs in the body. This means patients often travel from all over of the country to be seen by our specialists. Currently adults and children are seen in separate clinics around both the Guy’s and St Thomas’ sites.
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, a designated space for both adults and children is expected to open at St Thomas’ later this year.
Consultant Dermatologist, Dr Robert Sarkany at Guy’s and St Thomas’, said: ‘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.’
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.
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.’