Families of children with a very rare skin condition, epidermolysis bullosa (EB), celebrated 10 years of the dedicated specialist service at Birmingham Children's Hospital on Saturday 7 July with a party.
Professor Celia Moss established the EB service in 2002 – one of only two specialist paediatric services in the UK. EB is a rare genetic condition that causes the skin and internal body linings to blister when rubbed or knocked. It affects 1 in 17,000 people and there are thought to be 5,000 people in the UK with the condition.
Professor Moss secured funding from the government for all the different specialties involved in EB care, set up a multidisciplinary clinic and recruited specialist nurses to provide practical help and support with an outreach service to children with EB in the Midlands and North of the country. The service is now headed by dermatologist Dr Fiona Browne after Professor Moss’s retirement last year.
The children enjoyed craft activities, a clown performing magic tricks and a disco, paid for by Debra, the national EB charity. Patients, old and new, along with staff came to celebrate. Debra, the EB patient organisation, provided the funding for the entertainment and party food. There was also a surprise guest appearance from our Chief Executive, Sarah-Jane Marsh and Mr David Nicholson, Chief Executive of the NHS.
Ruth Ward, lead nurse for the service said:
“Families living with EB have huge challenges and our service helps families to achieve the best quality of life they can. People who work in the service tend to want to stay as it is very rewarding to be able to make a difference. We have built a great team that works very well together and we are all proud of our service here at BCH. We have grown with our children, learn from them every day and are often inspired by the way they cope with their difficulties.”
Birmingham Children’s Hospital NHS Foundation Trust provides a comprehensive service to children, young people and their families.
We are one of the leading paediatric teaching centres in the country, with international research and development in areas such as:
- Childhood cancer studies
- Liver disease
- Infection, inflammation and immunity
- Molecular genetics of childhood conditions (how these are passed on, and how they cause disease in the body in terms of chemistry)
- Nutrition, growth and metabolism in childhood
- Drug use in children
- Relapsed and refractory acute lymphoblastic leukaemia
- Infant neuroblastoma
- Infant brain tumours
Our facilities include:
- A 22 bedded Paediatric Intensive Care Unit
- A centre of excellence for children with cancer, cardiac, liver and renal disease
- A national transplant centre
- 280 inpatient and day-case beds including Child and Adolescent Mental Health Services
- 38 specialties and supporting departments
- An Emergency Department dealing with over 45,000 patients a year
- Twelve theatres
- Three MRI scanners
- A CT Scanner
- An endoscopy suite
- A catheter laboratory with digital imaging facility
- Burn, Neonatal Surgery and Education Centre
- Wellcome Clinical Research Facility
- Renal Unit
- Teenage Cancer Trust Unit
- Ronald McDonald House (parent and family accommodation).