This year’s Guidelines in Practice Award winning team explain how epilepsy patients have benefited from a collaboration between primary and secondary care and the voluntary sector

Epilepsy is a relatively common neurological condition, affecting up to 2700 patients in Forth Valley. It had been recognised that there were wide variations in the standard of epilepsy care.

The first aim of our project was to establish guidance on management of adults with epilepsy. The guideline would be produced in a variety of formats for use by all primary care staff throughout the Forth Valley. It would encompass co-morbidity issues, for example learning disabilities. Then, in collaboration with secondary care and voluntary services the initiative would seek to deliver the best possible service to this patient population in NHS Forth Valley and to facilitate high quality patient care.

A project steering group was formed in May 2002, comprising representatives from primary and secondary care, the voluntary sector and patient groups. It was managed by the clinical effectiveness support services of what was then the Forth Valley Primary Care NHS Trust, now Forth Valley Primary Care Operating Division.

Funding to support the clinical, project management and administrative costs (£32 000) was secured from the Primary Care Development Fund.

We undertook a baseline audit of current practice using a data collection tool developed specifically for the purpose. It had two distinct sections, which were:

  • A practice survey data collection tool which collated data on the overall approach taken by the practice to the management of patients with epilepsy
  • An individual patient audit tool which was used to collate evidence about the management of each individual with epilepsy aged 16 years or over within each practice.

The toolkit also included the following:

  • Standard statements for the individual patient audit, based on SPICEpc criteria1
  • A GPASS reporting database query to help identify the audit population2
  • Instructions on how to run the GPASS query
  • A check-sheet to coordinate all the component parts of the toolkit
  • Colour-coded submission sheets for the confidential submission of summary datasets to the clinical effectiveness support services for reporting purposes.

The baseline audit found that the epilepsy prevalence rate in Forth Valley was 0.8%, with a male to female ratio of 1:1. It also confirmed that the majority of practices did not meet the required standards or did not have an organised approach. The audit identified:

  • Significant inconsistencies in how – or whether – patients were coded using Read codes
  • Many patients whose diagnosis had not been confirmed by a neurologist
  • Few practices with functioning and accurate patient registers (50%)
  • Few practices that had implemented any guidance in the management of epilepsy (17%)
  • Few practices with an established recall system (11%)
  • Few practices using electronic data capture, e.g. GPASS, SPICEpc or CDSS (8%)
  • Inconsistent approaches to ensuring that patients were reviewed annually
  • Anticonvulsant drugs were still being prescribed generically by some practices despite strong evidence against generic prescribing in epilepsy
  • Inconsistent approaches to how reviews were conducted and the results recorded
  • Few practices providing written information to patients (23%)
  • Variations in the quality of information being offered.

Individual patient audit standards

The data collection tool included standards relating to the delivery of care to individual patients. These were interpreted from SPICEpc criteria set No 11 (Box 1, below).

Box 1: Audit standards derived from SPICEpc criteria set No 11
  • A diagnosis of epilepsy is confirmed by a specialist physician or neurologist
  • There is recorded evidence that individual counselling/advice has been provided about epilepsy
  • There is recorded evidence that written information has been provided about epilepsy
  • There is recorded evidence of an annual epilepsy review, to include the following review criteria:
    • Seizure type
    • Frequency of each type of seizure
    • Date of last seizure
    • Review of medication
    • Review of medication side-effects
    • Need for re-referral
    • Patient’s weight
  • A Read code is attached to a patient’s electronic record to establish an epilepsy register


The Forth Valley Guideline for the Management of Adults with Epilepsy was developed from SIGN 70 3 and SPICEpc. The guideline, which spans secondary and primary care management, was distributed to all Forth Valley practices in a variety of formats together with web-based and electronic versions. The guideline, which includes a quick reference guide (Figure 1, below), contains primary care guidance relating to:

  • Accurate coding options
  • Creating and maintaining accurate registers
  • Data cleansing
  • Recalling patients (Figure 2, below)
  • Annual review, including the prescribing of anti-epileptic drugs
  • Recording information electronically
  • Secondary referral guidance and proforma
  • Patient information leaflets. These were developed in conjunction with Central Scotland Epilepsy Support Association and ratified by the Trust, and entitled:
    • Information and support in Stirling, Falkirk and Clackmannanshire
    • What is epilepsy? An introduction
    • Diagnosing epilepsy: is it epilepsy? (Figure 3, below)
    • Recording seizures
    • Epilepsy first aid
    • Antiepileptic drugs
    • Epilepsy: balancing risk and safety
    • Treatment for epilepsy
    • Epilepsy and photosensitivity
    • Epilepsy and driving.
Figure 1: Front page of the quick reference guide
Figure 2: Guidance on recalling patients
Figure 3: 'Diagnoing epilepsy' patient information leaflet


We organised educational events in each locality. These focused on providing primary care staff with the skills to implement the guideline fully, including both clinical and administrative aspects of patient management. One session, on key information requirements and sources of local support, was held by patients and a voluntary organisation.

Some 650 clinical and administrative staff, including 201 (93%) of Forth Valley GPs, attended these events.


The practices’ approach to epilepsy management was re-audited approximately 12 months later. Some 66% (37) of the 56 practices in Forth Valley had completed both cycles of the audits at the time of reporting.

A further nine practices are already embarking on their second cycle of audit.

The re-audit found that since disseminating the guideline and attending the educational event the majority of practices had:

  • Implemented the guidance on management of adults with epilepsy and were managing patients according to the guideline (80%)
  • Reviewed, or were reviewing, how patients with epilepsy were coded and were introducing patient registers (100%)
  • Introduced a recall system and implemented annual review (76%)
  • Were consistently recording the results of this management (83%)
  • Provided patients with relevant information (96%).

Table 1 (below) shows the results of the second audit in comparison with the baseline audit.

Table 1: Improvements in the management of patients aged 16 and over with epilepsy in Forth Valley
Standard 1st audit Oct 2002-Jan 2003* 2nd audit Jan 2004*
  • The practice has implemented guidance for the management of patients



  • The practice has an up-to-date disease register of patients
50% 100%
  • The practice has implemented a patient recall system for patients
11% 76%
  • A consistent and evidence-based approach to the capture of a care management dataset has been implemented in the practice for the review of patients
8% 83%
  • The practice has high-quality written patient information to provide to patients
23% 96%
*Rounded to nearest percentage point


The impact of this project on the care of most adults with epilepsy in Forth Valley has been considerable.

Epilepsy patients in Forth Valley are now provided with high quality, consistent information at all stages, and it is available from all healthcare staff involved in their management.

Patients are reviewed annually, have their medication regularly monitored and are afforded access to secondary care services as required.

The guideline has been well received by primary care based staff and is in line with the quality indicators of the new GMS contract.4 It represents a seamless, patient-focused approach, which spans all sectors.

It is an example of innovation that demonstrates joint working between the professions and across traditional boundaries. In fact, the model has been so successful that we have since applied a similar approach to other clinical topics. Our project has attracted interest from organisations in other regions, including the Managed Clinical Network for Epilepsy in Lothian.

The project team is keen to share resources, experiences and training materials to enhance the management of this condition nationally.

Full details of this project, including the patient information leaflets, are available at:


  1. Scottish Programme for Improving Clinical Effectiveness in Primary Care (SPICEpc).
  2. General Practice Administration System for Scotland (GPASS).
  3. Scottish Intercollegiate Guidelines Network. SIGN 70. Diagnosis and Management of Epilepsy in Adults. Edinburgh: SIGN, 2003.
  4. Investing in General Practice:The New General Medical Services Contract.

Guidelines in Practice, October 2004, Volume 7(10)
© 2004 MGP Ltd
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