Epidermolysis Bullosa: Surrey Heath

The Government is committed to improving the lives of those living with rare diseases, such as epidermolysis bullosa (EB) under the UK Rare Diseases Framework. We published the fifth annual England action plan in February 2026, where we report on the steps we have taken to advance the priorities of the framework. Parents and children are usually referred to a specialist centre that employs staff with expertise and experience in treating the condition.

There are four specialist centres in England providing care for patients with EB: Birmingham Women’s and Children’s Hospital, Solihull Hospital, Great Ormond Street Hospital for Children, and Guy’s and St Thomas’ NHS Foundation Trust. Once symptoms improve or stabilise, it may be possible to arrange for treatment to be provided locally. The Department has not made a specific assessment of access to EB services in Surrey Heath.

Prescribers are responsible for ensuring treatments are clinically appropriate for their patients, taking specialist advice into account where relevant. Individual prescribing decisions, including for dressings and medicines, are a matter of clinical judgement based on patient need, national guidance on clinical effectiveness, and local integrated care board prescribing policies. NHS England continues to work with stakeholders to understand any emerging issues relating to access to appropriate treatments and to ensure that care remains safe and effective.

Wound care products are available to be prescribed in primary and community care through Part IX of the Drug Tariff. The ability for a prescribing clinician to use these in the treatment and management of conditions such as Epidermolysis Bullosa is in place. These products are listed on Part IX of the Drug Tariff, and its categorisation is being gradually updated to enable better comparisons to be made which will help prescribers to find the right products.