'Reaching out' to patients with rare skin condition


Posted on Thursday 18 July 2013
EB outreach team

The EB outreach team

A specialist outreach clinic that allows families living with a rare and painful genetic skin-blistering condition to be treated together and closer to home has been run successfully for the first time by doctors and nurses from Guy's and St Thomas'.

Patients living with Epidermolysis Bullosa (EB) across the south of England usually have to travel to St Thomas’ Hospital or Great Ormond Street, which are centres of excellence in EB care and the only centres of their kind covering the south of England.

“People with EB often have sore blistered feet, so making a journey to London can be very tiring and painful,” said Dr Jemima Mellerio, consultant dermatologist at St Thomas'.

“Because the condition is genetic and runs in families, the parents’ appointments at St Thomas’ are often on different days to the children’s at Great Ormond Street. We knew we had to try and find a way of providing more convenient specialist family-friendly care closer to patients’ homes.

“We’re delighted that the joint clinic was so successful.”

The clinics were made possible by Debra, the only national charity that supports people living with EB.

Debra funded travel expenses for the London clinical team to travel to Cromer, where they held a morning clinic for patients and offered local dermatologists an opportunity to learn more about the rare condition.

Both young and adult patients were able to see consultants and clinical nurse specialists in one place, and also had the chance to speak to one of Debra’s EB community support managers about their dedicated support and advice service for individuals and families living with EB.

Patient feedback from the day indicated unanimous support for the initiative. One patient said: ‘We came away and thought 'We really enjoyed that experience'. Everybody was so nice, kind and easy to talk to. It was very handy because it was local and there was lots of great advice.”

Further EB outreach clinics are soon to take place in Bury St Edmunds and Exeter.

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