Introduction and objectives Bedaquiline and delamanid were centrally commissioned by NHS England for management of MDR and XDR-TB, within specified criteria (including age 16–65, pulmonary disease, discussion in BTS MDR-TB forum and six months usage) in Aug 2015. We sought to determine ease of availability, obstacles faced and off licence use by prescribing centres.

Methods An electronic survey was sent to the leads or nominated deputy of MDR-TB centres in England, and the responses analysed using the Surveymonkey web tool.

Results Response rate was 64% (18/28). Of the respondents, 8 centres (44%) had not used the drugs since Aug 2015. Of the remainder, indications in all cases were either drug resistance (90% of centres) or intolerance (70% of centres). Intolerance was usually hearing loss from second line injectable agents and tendonitis from fluoroquinolones; a minority of patients also could not tolerate prolonged linezolid. 90% of cases had been discussed in the BTS MDR-TB forum; the exception was a case of non tuberculous mycobacterial(NTM) disease(M.abscessus) which was discussed with other NTM experts. There was minimal delay (<2 weeks) between the MDR-TB forum decision to use the drugs and NHS England approval when used for licenced indications; one delay occurred when requesting an extension beyond 6 months (7 weeks delay). There was minimal delay (<2 weeks) between NHS England approval and the patient actually receiving the drug. Both drugs were used in the same patient by two centres (20%). The drugs had been used ‘off licence’ by 6/10 centres. Details in Table 1. Free text responses highlighted difficulty in obtaining the outcome of individualised funding request decisions, difficulty obtaining funding for children (being paid for by the children’s hospital in one case), and two rejections of the use in NTM disease.

Conclusions Access to bedaquiline and delamanid within licenced indications seems to have minimal delay. Difficulties may arise when the drug needs to be used for ≥6 months. Problems are also reported with funding in children. There is emerging evidence of benefit in difficult NTM disease; this is an unlicensed indication that may expand in the future. Consideration may need to be given to a forum for difficult NTM disease.