Twenty-nine years ago DEBRA made history by funding the worlds first epidermolysis bullosa (EB) specialist nurse. This service grew into the EB nursing service, which was for many years solely funded by DEBRA. This changed in December 2011, when the charity successfully lobbied to receive full funding for all care that the NHS has a duty to provide, along with a clear charter of what patients can expect from the NHS and DEBRA. DEBRA, the NHS commissioners, clinical teams and managers worked together to review and further develop the specialist EB medical and non medical support services, and from this, a new era of partnership working commenced with the NHS funding core activities and DEBRA funding enhanced, non-core activities, e.g. additional bereavement visits, assistance with research nursing and outreach services. All EB nurses were subsequently given primary NHS contracts under the NHS regulatory umbrella, which brought a host of benefits including access to all health records/blood results, and enhanced training and development opportunities. The NHS also offered honorary contracts to the DEBRA community support managers, enabling them to work closely with the clinical teams and attend clinics.
