GPs should continue to treat patients aged 16 and 17 in primary care even though the epilepsy register now starts at 18 years, as Dr Andrew Orr explains


General practitioners certainly surprised the Department of Health, if not themselves, with their achievements in the first year of the QOF. The overall high point scores indicate that most practices attempted to gain points in all the individual clinical areas.

The 86.8% achievement for epilepsy indicators1 in England was, however, rather less than the overall 92.3% achievement across all the clinical domains, and was second from the bottom of the achievements table, with the COPD indicators coming in last.2 There is, therefore, some scope for improved effort.

The original QOF epilepsy indicators were a fair attempt to launch the condition as an item of chronic disease management (CDM), but there were shortcomings as discussed in Guidelines in Practice, August 2005.3 So do the revised QOF2 indicators address these issues, and do they enhance the case for epilepsy CDM in primary care?

New indicators

At first glance, the revised epilepsy indicators look just the same as before, and even on second inspection the changes are small (Table 1).

Table 1: Clinical indicators for epilepsy
Disease indicator
Clinical indicator
Points Payment stages
      Min (%) Max (%)
The practice can produce a register of patients aged 18 and over receiving drug treatment for epilepsy
% patients aged 18 and over on drug treatment for epilepsy who have a record of seizure frequency in the previous 15 months
4 40 90
% patients aged 18 and over on drug treatment for epilepsy who have a record of medication review involving the patient and/or carer in the previous 15 months
4 40 90
% patients aged 18 and over on drug treatment for epilepsy who have been seizure-free for the past 12 months recorded in the previous 15 months
6 40 90

It is no surprise that a point has been subtracted from Epilepsy 5 now that registers have been established in practices. This has also happened in the allocation of points in other clinical indicators. The remaining points are distributed as before, with little correlation to the evidenced benefits, and little attempt to enhance good clinical care.

Patient register – Epilepsy 5

The change seen here and through all of the new indicators is the raising of the register age from 16 to 18. The rationale for this is that 'care for younger patients is generally undertaken by specialists'.4

The SIGN guideline on epilepsy in children and young people (SIGN 81)5 aspires to cover diagnosis and care in people up to 19 years of age; however, SIGN 70 (epilepsy in adults)6 does not state the age at which adulthood begins.

The NICE guideline on the diagnosis and management of epilepsies in adults and children (NICE 20)7 states that young people are defined as being 12–17 years of age. Helpfully it highlights particular issues that are important at this time in a patient's life:

  • lifestyle and future career opportunities and decisions
  • driving and insurance issues
  • social security and welfare benefits issues
  • sudden death and the importance of adherence to medication regimens
  • issues surrounding the use of recreational drugs and alcohol
  • sexual activity issues
  • problems associated with sleep deprivation.

GPs can add to this as they know that teenagers are most likely to default from continuing care and, therefore, suffer the consequences. Having reached a suitable age, some teenagers with epilepsy will leave the parental home with its routine and supervision.These patients may have left school, their job prospects are poor and social deprivation threatens. It is particularly important that teenage girls with epilepsy are given accurate contraception advice and information on planning a pregnancy.

It, therefore, seems to be unwise to raise the register age to 18 thereby creating a 'black hole' in the continuing care of those patients with epilepsy who are at their most vulnerable at this stage of their lives. It would be good clinical practice to continue to maintain the register from age 16, while accepting that these teenagers (aged 16–18) will not contribute to QOF2 points.

Seizure frequency – Epilepsy 6

There is no argument that this indicator is based on evidence,8 and that it is an essential part of a structured review programme. Gleaning the information must be done with sensitivity, as patients often play down their seizure frequency because of work, driving, insurance or social issues.

Medication review – Epilepsy 7

In this indicator there is a significant addition, conveyed by the words 'involving the patient and/or carer'. The rationale expands this, 'to stress the importance of a face to face medication review, where clinically appropriate'.4

Whereas this might be desirable in a medication review in any CDM group, it is specifically more so with epilepsy, as the issues are altogether more complex (Box 1). This is likely to be more efficiently addressed by a face to face approach, which is encouraging.

Box 1: Questions to ask at medication reviews3
  • Has maximum seizure control been achieved? Patients are often very accepting of the status quo and seizure frequency needs to be established accurately. Given the wider range of anti-epileptic drugs (AEDs) now available, a change of medication and possibly a re-referral to secondary care might be indicated
  • Are side-effects at an acceptable level? Again, patients often feel that they must accept side-effects as the price for avoiding seizures. Side-effects can be alleviated by a careful change of medication (agreed by the patient)
  • Is a hepatic enzyme-inducing AED compromising contraception in a female patient? Is pregnancy being planned and, if so, has consideration been given to appropriate AED management? These issues are dealt with in detail in the SIGN 706 and NICE 207 guidelines, and also in the Royal Society of Medicine (RSM) guideline on management of epilepsy in women11
  • Is medication needed at all? Many patients languish on AEDs long after they are clinically needed, and thus suffer unnecessarily from their side-effects.This is particularly true of those in institutional care. Both the SIGN 706 and the NICE 207 guidelines give advice on how to manage withdrawal of treatment (with patient agreement). Of course, some patients will elect to continue taking medications because of the worry about seizure recurrence with consequent loss of their driving licence, and this has to be accepted
Taken from Guidelines in Practice 2005; 8(8): 14-17.

Seizure-free status – Epilepsy 8

There is no evidence that seizure-free status is a good measure of the effectiveness of epilepsy management, even if there is an instinct that this is so. It is, therefore, a continuing irony and disappointment that this indicator is given the greatest number of points (six). It would have been far more helpful to have redistributed some of these points elsewhere.

A missed opportunity in QOF2

Within the concept of the 'importance of face to' lies a missed opportunity to address the matter of non-pharmacological interventions in patients with epilepsy.

This omission has been pointed out before,3 and it overlooks the recommendations made by some of the main epilepsy guidelines, as discussed below.

The SIGN 70 guideline states that management should 'introduce non-clinical interventions,and disseminate information to help improve quality of life for patients with epilepsy'.6 It designates a whole section to information for discussion with patients and carers.

This is paralleled by NICE 207 which states that 'individuals should have access to: written and visual information; counselling services; information about voluntary organisations; epilepsy specialist nurses...'.7 These aspects of patient review are heavily endorsed by major lay epilepsy organisations, such as Epilepsy Action and Epilepsy Scotland, which provide much guidance and very useful checklists to help.9,10

It would have been very helpful indeed if some of the six Epilepsy 8 points had been diverted to support non-pharmacological interventions, either as a new epilepsy indicator, or as an addition to Epilepsy 7.


Epilepsy, the most common serious neurological condition, has up until now been paid little attention in general practice.

However, epilepsy is now established as a core component of CDM. There can be little doubt that patients with this condition have and will continue to accrue benefit from this.

It is a pity, therefore, that the new QOF2 indicators have done little to advance further the case of epilepsy management.


Guidelines in Practice, July 2006, Volume 9(7)
© 2006 MGP Ltd
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  1. National Quality and Outcomes Framework Statistics for England 2004/05.
  2. National Quality and Outcomes Framework Statistics for England 2004/05.
  3. Orr A. Have QOF indicators improved epilepsy management? Guidelines in Practice 2005; 8 (8): 14-17.
  4. British Medical Association. Revisions to the GMS contract 2006/07. Delivering Investment in General Practice. London: BMA, 2006.
  5. Scottish Intercollegiate Guidelines Network. SIGN 81. Diagnosis and management of epilepsies in children and young people. Edinburgh: SIGN, 2005.
  6. Scottish Intercollegiate Guidelines Network. SIGN 70. Diagnosis and management of epilepsy in adults. Edinburgh: SIGN, 2003.
  7. National Institute for Clinical Excellence. Guideline 20. The diagnosis and management of epilepsies in adults and children in primary and secondary care. London: NICE, 2004.
  8. Baker GA, Camfield C, Camfield P et al. Commission on Outcome Measurement in Epilepsy, 1994-1997: final report. Epilepsia 1998; 39 (2): 213-31.
  9. The Role of Primary Care in Epilepsy Management 2. Epilepsy Scotland, Epilepsy Action, 2005.
  10. Toolkit for Epilepsy 2. Epilepsy Scotland, Epilepsy Action, 2005.
  11. Epilepsy Guidelines Group. Primary care guidelines for the management of females with epilepsy. London: Royal Society of Medicine Press, 2004.