Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what assessment he has made of the financial and logistical burdens on families of children with severe forms of epidermolysis bullosa who are required to travel long distances to EB Healthcare Centres of Excellence.

NHS England recognises that some children with severe forms of epidermolysis bullosa (EB) and their families may need to travel significant distances to access highly specialised care provided through nationally commissioned EB centres. The rarity and complexity of this condition means that care is concentrated in a small number of centres to ensure access to multidisciplinary clinical expertise and specialist treatment.

The potential impact of travel requirements for highly specialised services is a focus for NHS England who work closely with providers to support equitable access to care for patients with rare diseases, including those with severe forms of epidermolysis bullosa. The national EB service specification includes a shared care and outreach model intended to minimise unnecessary travel wherever clinically appropriate. This includes outreach clinical nurse specialist support, liaison with local providers, home visits in some circumstances, and shared care arrangements with local hospitals and community teams.

There are two established NHS-funded travel schemes for patients. Patients may be eligible for support through the Healthcare Travel Cost Scheme, where they meet the relevant criteria, and non-emergency patient transport services may also be available where clinically appropriate. More information about the scheme and services is available at the following links respectively:

https://www.nhs.uk/nhs-services/help-with-health-costs/healthcare-travel-costs-scheme-htcs/

https://www.england.nhs.uk/wp-content/uploads/2022/05/B1244-nepts-eligibility-criteria.pdf