We fight to improve the lives
of everyone affected by epilepsy

List of resources to support epilepsy service improvement

Optimum clinical pathway: epilepsy

A new optimum clinical pathway has been developed for epilepsy. The clinical pathways were developed following a series of workshops in 2018 and 2019 with experts in these condition areas, including clinicians, patient groups and people with neurological conditions.

The pathways should set out what good treatment, care and support involves. This includes treatment and support for people who may be experiencing the first symptoms of a neurological condition, right through to people who have lived with such conditions for a long time. The intention is for these pathways to support the improvement of services, set out aspirations for good care, and enable good commissioning of neurological services locally and nationally.


RightCare epilepsy toolkit

In England, people living with epilepsy and the systems supporting them are experiencing challenges including high misdiagnosis rates; inaccurate epilepsy population estimates; increasing mortality attributed to epilepsy and a lack of optimal management strategies that could reduce unnecessary emergency care for people living with epilepsy.

Developed in partnership with Epilepsy Action, SUDEP Action and Young Epilepsy, this Epilepsy Toolkit will support systems to understand the priorities in epilepsy care and key actions to take. It provides opportunity to assess and benchmark current systems to find opportunities for improvement. It is produced with reference to an expert group of stakeholders and is supported by NICE.

Wider consultation has taken place with patient representatives, clinicians, social care organisations, professional bodies and other key stakeholders

Commissioners responsible for supporting people with epilepsy for their population should

Use the Epilepsy toolkit to work across systems ensuring that where possible the following improvement priorities are applied:

  • Identification and segmentation of epilepsy population
  • Misdiagnosis
  • Taking a risk management approach to mortality
  • Access to epilepsy specific services
  • Support for specific patient groups including children and young people, children transitioning to adult services, people with learning disabilities, pregnant women and older people.
  • Mental health and emotional wellbeing support
  • System-wide education and training on epilepsy
  • Medicines optimisation
  • Coordination of care
  • Personalised care
  • Experience of care

Use the self-assessment questionnaire to baseline your services and assess the extent of your improvement activity.


RightCare Neurology Focus Packs

Our focus packs provide more detailed information on those highest spending programmes previously covered by the NHS RightCare Intelligence, formerly Commissioning for Value, packs.

The packs include a wider range of outcome measures and information on the most common procedures and diagnoses for the condition in question. They help CCGs begin work on phase two of the NHS RightCare approach ‘What to Change’ by using indicative data to identify improvement opportunities.


Epilepsy data and what it can tell us

What are epilepsy services like in my area? Where can people with epilepsy access an epilepsy specialist nurse? How does the quality of services affect seizure freedom rates, or the level of risk posed by SUDEP?

What is this data for?

Epilepsy Action has collated a series of maps and data tables to help us understand more about epilepsy healthcare services across the UK. The maps allow you to look at services by health board and trust, and at regional and national level. They enable health professionals to see how services in different areas compare to others nationally – and how their service compares to others.

Who might find this data useful?

We hope this data will be useful to health professionals, commissioners and others interested in providing high quality health services for people with epilepsy. Epilepsy Action will use the data to pinpoint where epilepsy health services need to improve – and push for these improvements to be made. The data also allows us to identify any correlations between levels of service provision and levels of seizure control.


Epilepsy Commissioning Toolkit

Epilepsy Action together with Epilepsy Society created the Epilepsy Commissioning Toolkit. A hub of tools and resources to help commissioners improve or redesign epilepsy services.


Epilepsy 12

Established in 2009, Epilepsy12 has the continued aim of helping epilepsy services, and those who commission health services, to measure and improve the quality of care for children and young people with seizures and epilepsies. Round 3 is underway.


Epilepsy Specialist Nurse Competencies

These are helpful in understanding the expectations of different bandings. The competencies also contain sample job descriptions of band 6 and band 7 ESN posts. We recommend a weekly plan to aid capacity planning to show what the ESN will be focussing on in addition to patient contact, eg admin, education, service development and professional development. This is available on the second tab of the ‘prevalence and planning tool’ called planning which is available in the first section of the Epilepsy commission Toolkit www.epilepsytoolkit.org.uk

Value of epilepsy specialist nurses

We know that there are nowhere near enough ESNs to provide a service for everyone with epilepsy.

In the UK, there are over 600,000 people with epilepsy, and Epilepsy Action is only aware of 448 ESNs. This is for adults, children and people with learning disabilities. In comparison, there are currently 245 multiple sclerosis (MS) nurses in the UK for a population of 100,000 people with MS.

One of the reasons for the lack of nurses may be because the people who decide where money should be spent in the NHS do not seem to think that epilepsy care or ESNS are a high priority. They have not seen enough evidence that proves how effective and important ESNs are.

A solution

Epilepsy Action commissioned researchers at the University of Sheffield to research the role of ESNs. To do this, they looked at all the evidence that has been published so far and carried out a mapping review. The researchers looked at two things: all of the roles ESNs fulfil and the quality of the evidence. They then produced a diagram (or map) of this information.

We hope that the information will now help those planning local NHS epilepsy services. We also hope the work will encourage further research and more evidence to demonstrate how important ESNs are.


Event Date: 
Wednesday 14 September 2016

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