The epidermolysis bullosa (EB) team

The EB team are a specialist team, based within the dermatology service at GOSH. The team is made up of consultants, specialist nurses, and other EB specialists who all work together to provide a highly specialised service across all aspects of EB.

We know that your child being diagnosed with EB can be scary or worrying. The team are here to support you and your child throughout their care at GOSH. We’re here not just at clinic appointments, but also at any time in between, to answer any questions or queries you may have.

Your child will remain under the care of the GOSH EB team until they are 16 years old. We will start to prepare them for the move to adult services from the age of 12 years, so that they are fully ready to transition by the time they are 16.

Consultants:

• Dr Anna Martinez- Consultant Paediatric Dermatologist and Clinical Lead of the EB service
• Dr Gabriela Petrof- Consultant Paediatric Dermatologist
• Dr Maria Bageta- Locum Consultant Paediatric Dermatologist
• Dr Pablo Lopez Balboa- Clinical Research Fellow
• Dr Sumaiya Alauddin - Clinical Research Fellow
• Mr Joe Curry- Consultant Paediatric Surgeon
• Miss Gill Smith- Consultant Plastic and Hand Surgeon
• Mr William Moore- Consultant Paediatric Ophthalmologist
• Mr Colin Butler- Consultant Paediatric ENT, Head & Neck Surgeon
• Mr Kunal Patel- Consultant in Paediatric Dentistry
• Dr Anya Rybak - Consultant Gastroenterologist

EB Clinical Nurse Specialists (CNS)

• Janet Hanson
• Sophie Randall
• Finola Sheehan
• Sian Mathers
• Emma Pleass
• Katie Plevey

Other EB specialists

• Natalie Yerlett- Specialist Dietitian
• Kieran Petersen- Specialist Dietitian
• Michelle Wood- Specialist Physiotherapist
• Catherine Miller- Specialist Occupational Therapist
• Faiben Yemane- Paediatric Clinical Psychologist
• Aurore Sebastien- Social worker
• Julia Sparrow- Dental Hygienist
• Jenny Wood- Specialist Dental Nurse
• Amrita Singh- Speciality Dentist

Our EB nurses are here to provide care and support for your child, and to support you throughout their care. You may have already met one of our EB nurses at an appointment. Don't worry if you haven't, you will meet all of them at one stage or another throughout your child’s time at GOSH.

The EB nurses attend all EB clinic appointments and will accompany your child to any surgical procedures that they may need. They also will work with the medical teams in your local area, to ensure they understand how to care for your child’s EB.

If your child has complex EB, they will be allocated a named EB nurse. They will visit you and your child at home every three to six months to do a skin inspection and chat through any health and social needs. This visit will usually be a few weeks before your child’s clinic appointment, to allow plenty of time for questions and discussion in the comfort of your own home.

Janet Hanson

• Monday, Tuesday, Thursday & Friday
• 8am-6pm

Sophie Randall

• Monday-Thursday
• 8am-6pm

Finola Sheehan

• Monday-Friday
• 8am-4pm

Sian Mathers

• Monday, Tuesday, Thursday & Friday
• 8am-6pm

Emma Pleass

• Monday, Tuesday, Thursday
• 8am-4pm

Katie Plevey

• Monday, Tuesday, Thursday
• 8.30am-4.30pm
• Currently on maternity leave

Your child’s named EB nurse is your first point of contact for any medical issues related to their EB. If your child’s named nurse isn’t available, another EB nurse will be able to help you.

We aim to answer queries within 24-48 hours, but please note we are not an urgent or emergency service.

The EB nursing team are available Monday to Friday from 8am to 6pm, excluding bank holidays.

If your child needs urgent medical attention, you should contact NHS111 or attend your local A&E. If required, the A&E doctor can contact the GOSH main switchboard on 0207 405 9200 and ask to speak to the dermatologist on call.

• Message us on MYGOSH
• Call us on 0207 405 9200 Ext 7808/5053
• Email us on gos-tr.ebnurses@nhs.net

The EB nursing team are available Monday to Friday from 8am to 6pm, excluding bank holidays.

Your child will be invited to attend the EB clinic every 6-12 months. The duration between appointments will vary depending on their type of EB and their individual needs.

Clinic appointments range in length. For example, at Thursday clinic appointments, all the specialists will see your child, so please prepare to stay for the whole day.

You and your child will meet with the specialist and discuss their EB, care and needs. We might also need to take a sample of blood. Please let your child know we may take bloods so they are prepared, as some children find this scary, especially when it comes as a surprise. If your child is likely to find having a blood test upsetting, please let us know in advance so we can help with this.

EB clinic

This clinic is for people with EB simplex, mild dominant dystrophic EB, junctional EB, ichthyosis or Netherton’s syndrome.

• Location: Zayed Centre for Research, GOSH
• Every Tuesday from 1.30pm
• Dr Martinez, Dr Petrof, Dr Lopez Balboa, Dr Bageta, EB CNS Team

Clinic on Pelican

This clinic is for people with complex EB, icthyosis and Netherton’s syndrome.

• Location: Pelican
• Every Thursday 11am-5pm
• Dr Martinez, Dr Petrof, all members of the MDM team

MDM clinic on Hippo

This clinic is for people with complex EB, Ichthyosis and Netherton’s syndrome.

• Location: Hippo
• Selected Thursday afternoons from 1.30pm
• Dr Martinez, Dr Petrof, all members of the MDM team

Podiatry clinic

This clinic is for people who have issues with their feet as a result of their skin condition. It is run by a podiatrist (a foot specialist).

• 1st Tuesday of every month from 1.30pm
• Jill Thirkettle

If your child will be unable to make their appointment, please contact the outpatient team or the EB service co-ordinator as soon as possible. They can cancel and reschedule the appointment.

Please note, if your child doesn’t attend three appointments in a row, they will be discharged from the service. If you wish for them to be re-referred, you will need to contact your GP.

You can find out the latest information about travelling to the hospital here:

Travelling to GOSH

Non-emergency medical transport can be arranged in special circumstances. Please click the link below to find out more.

Travelling to GOSH

• Our onsite canteen- the Lagoon- is located on level two of the Variety Club building. The Lagoon has a hot food counter, coffee shop, ‘grab and go’ food and the GOSH shop.
• If your child’s appointment is on Pelican, they’ll be offered a selection of sandwiches and snacks.
• If your child is an inpatient (has to stay in the hospital) they’ll be provided with meals on the ward.
  
  

We realise that it can be difficult to get to GOSH early in the morning for an admission, so we can sometimes offer a space in our patient hotel, the night before. If you think you might need to stay in the patient hotel, please call the number on your admission letter to see if this is possible. There is a high demand for the hotel, so priority is given to families travelling furthest.