UK general practice: Continuing to fail in the care of people with epilepsy?

•Review rates fell significantly in 2014 when epilepsy was removed from QOF.•All measurable levels of quality care for epilepsy are substandard.•The concept of shared care is brought into question.•More GPs with special interest should be employed by CCGs.•QOF for epilepsy should be re-introduced with clinical targets adequately remunerated. To review the standard of clinical care of people with epilepsy (PWE) attending UK general practice after epilepsy was removed from the Quality and Outcomes Framework (QOF) in 2014. The case notes of 324 people were reviewed against standards based on National Institute for Health and Care Excellence (NICE), Drug Safety Unit (DSU), and Medicines and Healthcare products Regulatory Agency (MHRA) guidelines. Annual face-to-face review fell significantly (p = 0.021) after the removal of epilepsy from QOF in 2014. Clinical Commissioning Group (CCG) downloaded review rates fell significantly from 95% in 2010 to only 14% in 2016. One hundred and twenty seven (39%) people had seen their GP, and108 (33%) had not seen any doctor, in the past year. One hundred and seventy three (53%) were under specialist care. Forty nine percent not under specialist care had poor control. Two hundred and fifty four (78%) people were on ASM (Anti-Seizure Medication) associated with poor bone health, of these 41 (16%) were prescribed vitamin D. Fourteen women of childbearing age were taking sodium valproate, of whom only 5 (36%) had written confirmation of being counseled of the associated risks. Fifty six (17%) people were non-complaint with prescription collection, of which 66% had documented poor control. There was a discrepancy between actual face-to-face review rates and the review rates the CCG collected. This study reveals poor annual review rates for PWE in UK primary care, which have fallen further since the removal of epilepsy from QOF. Unmet needs persist for people with poorly controlled epilepsy not under specialist care, bone health, and the care of women of child bearing age. This study, along with previous work, brings into question the concept of shared care for PWE. Clinical Commissioning Groups should consider investing in the training and employment of GPwSIe (GP with Special Interest in epilepsy) and ENS (Epilepsy Nurse Specialists) to work in the community. The Government should examine re-introducing epilepsy back into QOF with measurable clinical targets and adequate remuneration.