Agenda item

The Committee will discuss a report from the NHS on the current state of Epilepsy Services within Oxfordshire.

The Committee is invited to consider the report, raise any questions and AGREE any recommendations arising it may wish to make.

NB Please note that there is a statement from NHS England on this topic, which follows the main report.

Professor Arjune Sen (Consultant Neurologist, OUH), Jackie Roberts (Lead Learning Disability Epilepsy Specialist Nurse, OUH), Rohini Rattihalli (Consultant Paediatric Medicine, OUH), Marcus Neale (Epilepsy Specialist Nurse, OUH), Rustam Rea (Consultant, OUH), Jane Adcock (Consultant Neurologist, OUH), and Janice Craig (Medicines Optimisation Lead Pharmacist, NICE Medicines and Prescribing Associate, BOB ICB), Rachael Corser (Chief Nurse, BOB ICB) and Sarah Fishburn (Senior Clinical Quality Improvement Manager, NHS England) attended to speak on the topic of epilepsy services.

The Chair invited registered speaker Kristi McDonald to address the Committee.

Kristi McDonald shared her personal experience with epilepsy and the impact of the new regulations on her life. She highlighted the severe neglect and ignorance faced by epilepsy patients. She described the complexities of living with epilepsy, the mental health impacts, and the recent tightening of policies on sodium valproate and topiramate. She criticised the policy for stripping away patient involvement and breaching reproductive rights, sharing examples of how the policy had negatively affected other patients.

The Committee then asked the Consultant Neurologist to introduce the epilepsy team and provide an overview of the service. The Consultant Neurologist explained the unpredictability of epilepsy, the associated comorbidities, and the socioeconomic impact. He highlighted the significant demand on the service, the shortage of specialist nurses and neurologists, and the long waiting times for patients. He also discussed the impact of the Medicines and Healthcare products Regulatory Agency (MHRA) regulations on the service, including the need for additional patient appointments and the challenges of implementing the new guidelines.

The Committee asked why the Oxfordshire epilepsy team was significantly under-resourced compared to other areas with similar populations, and what the historical context and funding situation behind this disparity were. The Epilepsy Specialist Nurse reflected on the increasing complexities in neurology since the late 1990s. Despite prioritising patient care, the nurse highlighted the difficulties in sustaining services due to insufficient resources, staffing, and funding, especially when national programmes lacked additional support.

The Committee inquired about the rise in demand for services for patients with learning disabilities and epilepsy. The Lead Learning Disability Epilepsy Specialist Nurse had been working closely with Oxford Health and Oxford University Hospitals to streamline services for patients in Oxfordshire. There were two learning disability teams, each with experienced Band 6 and Band 7 nurses. These teams primarily supported individuals with epilepsy and other health conditions, ensuring medication compliance and addressing potential risks like SUDEP. A significant focus was on the transition from children's to adult services, with efforts to facilitate smooth transitions through transition clinics.

The Committee asked the Consultant Paediatrician about the complexities of managing epilepsy in children, particularly those with learning disabilities. The Consultant Paediatrician discussed the need for personalised risk-benefit assessments and the lack of a national framework to guide these decisions.

The Committee asked the Medicines Optimisation Lead Pharmacist about the regional approach to the MHRA regulations and the evidence of harm caused by the policy. The Senior Clinical Quality Improvement Manager at NHS England discussed the longstanding awareness of risks associated with sodium valproate and the subsequent conversations with the MHRA following the first alert last year. Concerns were raised by clinicians and service users about the impact on medication choices and family planning. The MHRA focused on drug safety, stating that while they regulate medication, it is the NHS’s responsibility to implement these regulations.

The Committee then asked about the potential for improving services and NHS performance on epilepsy. The Epilepsy Specialist Nurse discussed the setup of a satellite clinic in Brackley, which reduced travel times for patients significantly.

The Committee AGREED to delegate to the Health Scrutiny Officer and the Chair to finalise the wording of the recommendations.