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Using NICE guidance to standardise epilepsy management

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Whitten, E. (2008) Using NICE guidance to standardise epilepsy management. This is an extended version of the article published in Nursing Times; 104: 13, 56-57.

This article examines how NICE guidance can be used to standardise care approaches in epilepsy management. It explores the definitions of epilepsy and how the condition is related to learning disabilities. It then outlines how a project was set up to implement NICE guidance, and provides some audit outcomes following implementation in a learning disability service.

Esther Whitten, RNLD, Dip epilepsy care
, is epilepsy specialist nurse, Sandwell Mental Health NHS and Social Care Trust, West Midlands.


This article discusses the relationship between epilepsy and learning disability and shows how to implement NICE guidance through a set proforma that can be used in both health and social care settings. The purpose of this project is to transfer guidance from a reference source to a useable implementation document.

The project intended to use national guidance to deliver an epilepsy service that promoted multidisciplinary working and standardised approaches to assessment and management. The main aim was to formalise and assess patient care in line with NICE recommendations, establishing minimum levels of care and a universal understanding for implementation of both national guidance and care approaches.

Definition of learning disabilities

The Valuing People white paper identified that a diagnosis of learning disability requires a combination of skill deficiencies that were present before adulthood (Department of Health, 2001). This document categorised learning disability as ‘impaired intelligence and social functioning, which means the inability to learn or retain complex or new skills’. Although a reduced level of intellectual functioning is the main characteristic feature of the disorder, the diagnosis is made only if it is associated with a diminished ability to adapt to the daily demands of the normal social environment (World Health Organization, 2005).

The definition does not stand alone and, once a diagnosis is secured, implementation of support or care is usually geared towards the severity of the learning disability, rather than just the diagnosis. Learning disability is further divided into severity, which is mainly determined on perceived level of IQ.

Definition of epilepsy

Epilepsy is the most serious long-term neurological condition, affecting one in every 131 people of the general population. Due to the uncertainty of symptoms, diagnosis relies on effective assessment and good history-taking. Brown at al (1998) stated that epilepsy is primarily a clinical diagnosis – the electroencephalogram (EEG) is not a diagnostic tool but helps determine seizure syndrome and appropriate treatment. This highlights the need for precise and in-depth information during the investigation period, both from the person experiencing the seizures and witness statements.

Epilepsy is characterised as recurrent, stereotyped, unprovoked seizures. A seizure is defined as: ‘A stereotypical, paroxysmal event that is secondary to abnormal electrical discharge from cerebral neurones, resulting in various clinical manifestations, which include motor, sensory, cognitive and autonomic signs and symptoms’ (Brown et al, 1998).

Epilepsy and learning disabilities

It is important to recognise the two conditions as separate entities, while acknowledging that the relationship between them has several factors. Some specific epilepsy syndromes, for example Lennox-Gastaut syndrome, give rise to learning disabilities and the prevalence of epilepsy has a direct link to the severity of learning disability.

Although epilepsy is the most common serious neurological condition, with a prevalence of 0.5% in the general population, Tiffin and Perini (2001) say the risk of epilepsy rises from 7% in people with mild learning disabilities to as high as 67% in those with severe learning disabilities and physical impairments. Williamson and Johnson (2004) found that epilepsy is over 20 times more common in people with learning disabilities than in the general population.

In certain learning disability syndromes the seizure types and prognosis have been identified, so identifying the cause of the learning disability could have important implications for the management of the epilepsy (Wilcox and Kerr, 2006). This underpins the principle that the diagnosis of learning disabilities should not overshadow the diagnosis of epilepsy. Both should be managed as separate conditions instead of epilepsy being seen as a co-morbid condition to the learning disability.

Seizure type

Epilepsy is not a single disorder – it has many classifications that, without concise assessment, could lead to misdiagnosis and mismanagement. Classifying seizure type in association with the International League Against Epilepsy (2008) system will aid treatment and management decisions.

Diagnosis of seizure type can be extremely difficult in people with learning disabilities. Seizures do not always conform to classic descriptions and people with learning disabilities are likely to have more complex seizure patterns than those without, and may be unique to the individual. Seizure activity needs to be differentiated from stereotyped behaviours.

It is important to remember that the seizure is the symptom of the diagnosis. The better the symptoms are described, the more likely it is that a correct diagnosis will be made.

Epilepsy management

Having both epilepsy and a learning disability can have many unique challenges for their ongoing management. Hannah and Brodie (1998) stated that people with learning disabilities are more likely to have:

  • More than one seizure type;
  • Increased seizure frequency and severity;
  • Treatment-resistant epilepsy.

They are also more likely to be:

  • Prescribed more than one medication;
  • Susceptible to unidentified side-effects.

Understanding seizures is key to holistic epilepsy management. Acknowledging the difficulties associated with its management in people with learning disabilities will lead to a more effective plan for managing the condition.

Communication skills

Obtaining an individual’s subjective view of their seizures is an important element in understanding and managing epilepsy. Communication difficulties can therefore be one of the main stumbling blocks to effective epilepsy management in people with learning disabilities as they may not be able to give their own account. According to Oguni (2004), the confirmation of seizure types usually relies heavily on the history taken from caregivers. How well carers know the person whose seizures they are describing will affect the quality of information received. However, eliciting an accurate history of events through a third person is often problematic. Drawing attention to this issue often identifies paid carers’ lack of education in epilepsy management, especially the documentation of precise, detailed and relevant information.


There is a tendency to stereotype the behaviour of people with learning disabilities. The challenge for nurses is in understanding the cause or purpose of the behaviour. Deb (2006) argued that it is imperative to find out the cause and consequences of behaviour problems before deciding on an appropriate management strategy, and understanding the relationship between epilepsy and behaviour is paramount when trying to assess the reason or purpose of the behaviour. Nurses need to question whether the behaviour problem is:

  • The seizure itself;
  • A result of prescribed medication;
  • A result of effects of the seizure (pre-seizure or post-seizure behaviour changes);
  • Not associated with epilepsy (Trimble and Schmitz, 2002).

Functional analysis can be helpful to explore the reason for the behaviour.

Clinical guidance

NICE (2004a) published guidance on the diagnosis and management of epilepsies in adults and children in primary and secondary care. This makes specific reference to people with a learning disability, highlighting the importance of risk assessment and specialist multidisciplinary working.

Leach et al (2005) found that 55% of adults with epilepsy had never received specialist advice; reassessment identified diagnostic uncertainty, failure to classify epilepsy type and a lack of information and advice about all aspects of epilepsy care. McGrother et al (2006) said that epilepsy care in people with learning disabilities is complex, and advocated multidisciplinary working.

NICE guidance was predated by various documents specific to people with learning disabilities –Valuing People (DH, 2001) and International Association for the Scientific Study of Intellectual Disability clinical guidelines both make reference to epilepsy management (Working Group of the International Association of the Scientific Study of Intellectual Disability, 2001). However, guidelines are of little use if they are not recognised, implemented and supported.

Review of epilepsy management

There is ample evidence of inconsistencies in approaches to epilepsy management. Hanna et al (2002) highlighted a lack of access to appropriate specialist care and an absence of clinical details in documentation relating to seizure type, frequency and triggers. A report by the All-Party Parliamentary Group on Epilepsy (2007) revealed serious shortfalls in service provision.

The publication of NICE guidance allowed our trust to establish a baseline of epilepsy management against national standards. Rajpura and Sethi (2004) stated that in order for people with epilepsy to receive the highest-quality services possible service provision should be reviewed and benchmarked against ideal care standards that cover a comprehensive range of services to meet all patient needs.

Before the start of the project, people with epilepsy were seen in the learning disability mental health outpatient clinic. This was a generic clinic that focused on all aspects of medical care in relation to learning disability and mental health.

Implementing NICE guidance

Taking a practical approach to clinical guidance is a way for nurses to use evidence-based documents to change practice. NICE (2004a) guidance identified a number of priority areas:

  • Diagnosis:
    • Seizure type;
    • Aetiology and co-morbidity;
  • Management:
    • Care plan;
    • Individualised treatment plan;
  • Review and referral:
    • Structured review.

It also highlighted several factors specifically for people with learning disabilities:

Acknowledge the confusion between stereotyped behaviours and seizures;

  • Use of video to aid diagnosis;
  • Use of risk assessment in key areas:
    • Bathing and showering;
    • Preparing foods;
    • Using electrical equipment;
    • Managing prolonged seizures;
    • Impact of epilepsy in social settings;
    • Independent living.

Patients should also be assessed for their risk of sudden unexpected death in epilepsy (SUDEP).

Transferring guidance into practice

It was agreed that the guidelines would be implemented through the introduction of a multidisciplinary specialist epilepsy clinic. This would run for the period of the project’s audit, then epilepsy management would revert to the previous model.

The use of specialist nurses and multidisciplinary working is not a new concept and patients value the role of the specialist nurse (Ridsdale et al, 2003). A national survey in 2004 showed that, although there were common elements of the specialist role, diversities occurred in specific role-defined areas (Goodwin et al, 2004).

A total of 23 patients were invited to a 45-minute appointment to review their epilepsy. The service allowed clinicians to focus solely on each patient’s epilepsy.

Using the assessment document

Key priorities from the guidance were implemented through the development of an assessment document. This enabled practitioners to assess the medical, nursing and social needs of people with epilepsy and their carers. The document was broken down into several key sections:

  • History of diagnosis;
  • Relevant investigations;
  • History of seizure type, presentation, frequency;
  • Current seizure type;
  • Description and type, as given by the carer;
  • Management of prolonged seizures;
  • Social impact;
  • Risk assessment.

The document allowed a baseline of previous epilepsy management to be established, as well as an individualised assessment with personal treatment/management plans. It also standardised the approach to the review process. Sander (2005) identified that successful epilepsy treatment involves beneficial effects on social, vocational and psychological function. This extends beyond seizure control to freedom from the fear associated with seizures.

Reviewing implementation of NICE guidance

After the clinic had ended, a retrospective audit was conducted examining the management of epilepsy before the publication of NICE guidance and after the completion of the clinic. For both audits information was extracted using a standardised audit tool designed using NICE guidance as reference. The data was analysed separately and then compared. The implementation of NICE guidance showed improvements to epilepsy management. The most significant findings were that:

  • The majority (83%) of participants had an accurate name and detailed seizure description, compared with only 6% at the start of the project;
  • Seizure frequency and severity was recorded for all patients at the end of the project;
  • Over three-quarters (76%) of patients had changes made to their seizure diagnosis;
  • Nearly all (91%) consultations led to changes in treatment plans, compared with 50% at the start of the project;
  • All patients received an individualised risk assessment, compared with 4.5% before the project started, and 68% had risks identified at the end of the project.

Analysis of documentation

The assessment document enabled practitioners to standardise questions asked during the consultation, which led to an improvement in clinical documentation. The document was produced on purple paper so it was easily identified within clinical notes and could be used as a ‘one-stop’ reference on a patient’s epilepsy management.

Having a section that discussed or documented carers’ understanding of epilepsy was invaluable. It enabled carers to demonstrate witnessed symptoms and classify seizures as they understood them. This section of the document highlighted the lack of understanding about epilepsy and identified the need for education for the majority of care providers.

Re-evaluating seizure assessments identified that 9% of patients were experiencing seizures, although previous documentation stated that they were seizure free.

It was important to use the document as a guide to essential questions in epilepsy management. Deviating from it might be necessary, however, where discussions could not be included in the standardised format.

Risk assessment and care planning

A risk-assessment tool was developed and completed for all patients. Where risk was identified, the process for the development of care plans was agreed. A discussion routinely took place about the presence of care/management plans. If rescue medication was prescribed and still required a protocol for its use, this was discussed and agreed.


The publication of national guidance created an opportunity to change practice. Implementing NICE guidance using standardised approaches to management showed improvements to seizure assessment, the matching of medication to seizure type and assessment of social need. The project highlighted the gap between practice and NICE recommendations, especially for people with complex needs.

Implementing NICE guidance improved patient care and epilepsy management by:

  • Improving documentation;
  • Gathering better seizure assessments;
  • Allowing for a more accurate matching of medication to seizure type;
  • Working towards minimum best-practice standards.

Implications for practice

The project revealed several implications for practice:

  • Working from the set proforma gave clarity and enabled the team to ensure the same quality of care was provided to all patients. It also created a document that remained in patients’ notes following the clinic, which could be referred to in future;
  • Dedicating time solely to epilepsy allowed practitioners to spend time developing a concise history, matching seizure descriptions and types, and discussing social issues;
  • Access to a quick-reference guide such as the one for children and young people (NICE, 2004b) and patient information booklet (NICE, 2004c) meant that all people attending were shown the guidance, and left with information about it.

In hindsight, carrying out a patient/carer questionnaire would have provided valuable information. We found that, generally, patients and carers did not produce records such as seizure frequency charts, but we did not review this as a separate aspect.

The assessment tool was not used by other clinicians in the team. It would be valuable to see if outcomes change depending on the skills and knowledge of the person completing the assessment document.


Implementing NICE guidance is simple and effective and can lead to improvements in management. It is a universal tool that can be adapted for each service area. Service providers do not need to develop specific clinics for implementation but do require drive and motivation from clinical staff.

Working to a proforma based on national guidance made a significant positive impact on:

  • Care management;
  • Seizure classification;
  • Rescue medication protocols;
  • Patient safety;
  • Improved use and monitoring of medications;
  • Ability to reduce number/dose of medication;
  • Reduced possibility of side-effects;
  • Better seizure control.

The APPG on Epilepsy’s (2007) report recognised that NICE guidance had been seen as ground-breaking with regard to setting standards for optimal care, but concluded that effective implementation remains in question. Our work highlights the importance of implementing this guidance and demonstrates how this can improve the care of people with epilepsy.

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