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Working in partnership with the NHS

Working in partnership with the NHS

DEBRA works in partnership with the NHS to deliver an enhanced EB healthcare service, relied upon by the 5,000 people living with EB in the UK.

DEBRA provides funding that enables the specialist healthcare teams to take on additional work that benefits people living with EB. Our main ongoing partnership with the NHS is helping to deliver a holistic specialist nursing service.

There are various principles which outline what nursing care and services the NHS must provide to all people living with EB, and the care and support DEBRA can fund to work in partnership with the NHS and enhance the service.

DEBRA enhances the healthcare service available to people living with EB in many different ways:

  • Funding one extra working day per week for specialist EB dietitians at Birmingham Children’s Hospital and Guy’s and St. Thomas’ Hospital, enabling more people with EB to access specialist nutritional advice and improve their health and wellbeing, promote vital wound-healing and boost immunity.
  • Funding specialist foot clinics, equipping people with EB to care for and minimise often agonising blistering on the feet.
  • Supporting outreach clinics, enabling people with EB to receive specialist care closer to home, supporting training in the local healthcare service and increasing EB service coverage throughout the UK.
  • Funding additional bereavement support after the death of a person with EB.
  • Raising awareness of EB in the wider community – Thanks to support from DEBRA, EB nurses are able to spend time raising much needed awareness of EB and speaking about the condition at schools and places of work as well as sharing their valuable specialist expertise at medical conferences and other events.
  • Research – Without funding from DEBRA the specialist EB nurses would not be available to conduct or assist with research. The contribution of the Nursing Service in this area is absolutely vital to the development of effective treatments, and ultimately, a cure for EB.
  • Product development and evaluation – Funding from DEBRA and partnership working with the NHS ensures specialist EB nurses are able to conduct vital product evaluation trials and develop products specific to the needs of EB which might not otherwise be available. 
  • Publications – DEBRA works closely with the specialist EB nurses to produce a range of publications and materials, including national and international Best Practice Guidelines, which provide high-quality, detailed, authoritative and reliable information about EB. 
  • Teaching – DEBRA's support ensures that, by giving training, the specialist EB nurses are able to pass their knowledge and expertise on to others living and working with EB, including carers and other healthcare professionals. This means the best possible care will always be available to people with EB.



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