Epilepsy and the NHS Long Term Plan

Published: January 07 2019
Last updated: September 28 2022

NHS England has published its Long Term Plan. The plan sets out the aims and priorities of the NHS for the next 10 years. The plan does mention epilepsy but disappointingly, epilepsy and other neurological conditions do not seem to be a priority for the NHS.

The plan includes proposals to create ‘clinical networks’ in order to improve the quality of care for children with epilepsy. There is, however, little mention of how the proposed clinical networks will work. The plan mentions “sharing best clinical practice, supporting the integration of paediatric skills across services and bespoke quality improvement projects”. We need more information about these proposals. We would welcome the opportunity to work with the government and NHS to ensure the clinical networks work in the best interests of children with epilepsy.

The proposals to improve the care for children with epilepsy are encouraging. It is however disappointing that the Long Term Plan does not mention services for adults with epilepsy. It also makes no mention of the move from children to adult services (transition). These services are in need of drastic improvement. In addition, there is very little detail in the plan about wider neurology services.

The proposals on tackling inequality are encouraging. In a recent report, Public Health England (PHE) found that epilepsy-related deaths increased by 70% between 2001-14, and a link between deaths and poorer areas. It was found that people with epilepsy living in poorer areas may be at a three times higher risk of death than people in wealthier areas.  It is therefore vitally important that action is taken to investigate this link so that no-one with epilepsy dies prematurely, simply because of where they live.

A 2017 report found that epilepsy was a leading cause of death in people with a learning disability. The NHS Long Term Plan commits to speeding up recommendations from this report, to identify common themes and learning points and provide targeted support to local areas. Epilepsy Action is pleased that there is recognition from the government and NHS that more work is needed. However, it is disappointing that epilepsy was not specifically mentioned in the plan. We hope to see more focus on the links between learning disabilities and epilepsy in the future and hope this plan is the start of that process.

Overall, it is disappointing that epilepsy is not given more priority in the Long Term Plan. Epilepsy and neurology services in the NHS are already under pressure. It is very concerning that these services are not given the focus they need. We have seen that when services for specific conditions are included in NHS strategic plans, huge improvements can be made to the care that people receive.

We will monitor how the proposals are introduced both nationally and locally. We will also continue to work to ensure that all people with epilepsy have access to the high quality epilepsy healthcare services they deserve.