See also separate articles Epilepsy in Children and Young People and Epilepsy in Adults.
Epilepsy is the most common serious neurological condition seen in primary care. Frequently, its management and patients' experience are less than ideal. With effective management, approximately 70% of those with active epilepsy can become seizure-free; however, currently only about half are seizure-free.
A drive to improve epilepsy management in General Practice has been exerted by several key initiatives:
- The new General Medical Services (nGMS) contract.
- National Institute for Health and Clinical Excellence (NICE) guidelines for epilepsy.
- National Service Framework (NSF) for long-term conditions.
Areas of responsibility in General Practice include:
- The identification of patients with epilepsy.
- The systematic review of all patients with epilepsy, on at least annual basis.
- The identification and effective referral of patients requiring specialist review.
- The effective recording of data in order to fulfil the requirement of the nGMS contract and auditing of care to improve epilepsy management in the long term.
- UK prevalence of epilepsy (treated and untreated) is about 1 in 130 of the general populace.
- Lifetime prevalence is thought to be between 2% and 5%.
- Annual incidence in a developed country is about 1 in 2,000 with peaks of onset in children and in the elderly.
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- Following a first seizure, an individual may go to A&E or their local GP. An accurate history together with an eyewitness account, where available, are important to discern whether the 'attack' is indeed a seizure. A thorough physical examination should also be undertaken.
- The healthcare team at this initial point of contact should be responsible for onward referral and providing information to the individual/carer/family about how to recognise any further seizures, first aid and the importance of reporting further attacks whilst awaiting diagnosis.
- If a first epileptic seizure is suspected, or where there is diagnostic uncertainty, the individual must be referred on to a specialist service (adult or paediatric neurology dependent on age) for full diagnosis. 'First fit' clinics should be accessible urgently, within a fortnight.
- Specialist involvement is critical to prevent incorrect diagnosis or classification of epilepsy which, in turn, can lead to inappropriate treatment and persistence of seizures.
The care of patients with epilepsy has been traditionally shared between primary and secondary care. After a new diagnosis and investigation, patients are usually commenced on treatment by their specialist. All patients with epilepsy should have:
- An accessible point of contact to specialist services.
- A care plan agreed between the individual/family/carers and primary and secondary care.
- A named individual to contact for information if required.
Once stable, patients are usually discharged back to their GP and primary care team. In some areas, specialist epilepsy liaison nurses or GPSIs may provide support for those working in primary care. Some PCTs have commissioned Local Enhanced Services (LES) for epilepsy.
See also separate articles Anticonvulsants used for Generalised Seizures and Anticonvulsants used for Partial Seizures. Interactions between anti-epileptics are complex and may increase toxicity without a corresponding increase in anti-epileptic effect.
See separate article Status Epilepticus Management.
Mood and risk of self harm
At reviews, screening questions for anxiety and depression should be part of routine enquiry. If found, these should be treated appropriately.
A recent Drug Safety Update drew attention to the increased risk of suicidal thoughts and behaviour associated with anti-epileptic drugs (AEDs). The risk is small (an additional 2/1,000 events compared with placebo) but appears to apply across the different AEDs and may be seen within a week of starting treatment. All patients should be warned to report mood changes or thoughts of self harm to their doctor and these should be directly monitored at reviews.
Patient and carer education
After a new diagnosis of epilepsy and at future times, individuals with epilepsy, their families and carers will have many questions. Find out current understanding, what information they desire and acknowledge emotions surrounding diagnosis and treatment.
All patients should have access to wide-ranging information including treatment options, risk management (first aid, safety and injury prevention at home, school and work), benefits, insurance issues, the importance of disclosure at work, driving, lifestyle issues (eg effects of recreational drugs, alcohol, sexual activity and sleep deprivation), family planning and the need for pre-conception counselling.
Patients and their carers should also be aware of voluntary organisations and available support groups. The aim, as with many chronic conditions, is to involve and educate patients/families/carers so that they can be fully involved in all decision making and feel empowered to self-manage their condition, although how best to facilitate this remains unproven.
A Cochrane review found that whilst two types of intervention (epilepsy specialist nurses and self-management education) showed some evidence of benefit, there was no clear evidence that other service models substantially improved outcomes for adults with epilepsy.
Although a review of the impact of four different educational and counselling programmes - for children, children and parents (2 programmes) and teenagers and parents - showed some benefit to children with epilepsy, their impacts were extremely variable.
Carers' confidence in responding to seizures should be determined at annual reviews. They should receive first aid training but can also be trained and authorised to use rectal diazepam or buccal midazolam for prolonged or recurrent seizures.
Re-referral to a specialist is appropriate where the following are considerations:
- Poor control.
- Seizures have continued for more than five years.
- Side-effects or poor tolerance of current medication.
- Concurrent illness complicating management.
- Need for pre-conception advice.
- Concerns about the underlying cause of fits.
- For withdrawal of anti-epileptic drugs (AEDs).
Consider the needs of special groups, including:
- Women of reproductive age: see separate article Epilepsy and Pregnancy.
- Those with learning disability:
- Allow time for the consultation.
- Ensure that the patient comes with a carer who knows them well and who can bring information about seizure type and frequency, possible side-effects of medication, as well as general health and behaviour.
- Multidisciplinary care is required - management and treatment of the epilepsy should be undertaken by a specialist. Community learning disability nurses can liaise between specialist services, patients and carers.
- Management and treatment of epilepsy should be undertaken by a specialist working within a multidisciplinary team.
- Diagnosis is often difficult - eyewitness accounts and corroborative video evidence may help.
- Choice of anti-epileptic drugs (AEDs) should consider likely side-effects impacting on cognition or behaviour.
- Risk assessment to include bathing and showering, preparation of food, use of electrical items and impact of epilepsy on a social setting.
- The elderly: see separate article Epilepsy in Elderly People.
- Epileptic attacks are the most frequent medical cause of collapse at the wheel. If within a 24-hour period more than one epileptic attack occurs, these are treated as a 'single event' for the purpose of applying the epilepsy regulations. Epilepsy includes all events: major, minor and auras.
- Any patient should be advised to stop driving and notify the Driver and Vehicle Licensing Agency (DVLA) and their motor insurance company following a seizure.
- Group 1 (private car or motorcycle):
- A person who has suffered an epileptic attack whilst awake must refrain from driving for at least one year from the date of the attack before a driving licence may be issued.
- A person who has suffered an attack whilst asleep must also refrain from driving for at least one year from the date of the attack. However, if they have had an attack whilst asleep more than three years previously and have had no attacks whilst awake since that original attack whilst asleep, then they may be licensed even though attacks whilst asleep may continue to occur. If an attack whilst awake subsequently occurs, then must refrain from driving for at least one year from the date of the attack.
- The person must comply with advised treatment and check-ups for epilepsy, and the driving of a vehicle by such a person should not be likely to cause danger to the public.
- Group 2 (large goods vehicle - LGV, or passenger carrying vehicle - PCV):
- During the period of 10 years immediately preceding the date when the licence is granted the applicant/licence holder should:
- be free from any epileptic attack, and
- have not taken medication to treat epilepsy, and
- not otherwise be a source of danger whilst driving.
- Group 1: provided a licence holder/applicant is able to satisfy the regulations (see above), a 3-year licence will be issued normally. A 'Till 70' licence is restored if seizure-free for 5 years since the last attack with medication if necessary in the absence of any other disqualifying condition.
- Group 2: regulations require a driver to remain seizure-free for 10 years since the last attack without anticonvulsant medication.
- Following first unprovoked epileptic seizure or solitary fit:
- Group 1: 6 months off driving from the date of the seizure unless there are clinical factors or investigation results which suggest an unacceptably high risk of a further seizure, ie. 20% or greater per annum.
- Group 2: 5 years off driving from the date of the seizure if the licence holder has undergone recent assessment by a neurologist and there are no clinical factors or investigation results (eg EEG, brain scan) which indicate that the risk of a further seizure is greater than 2% per annum. They should have taken no anti-epileptic medication throughout the 5-year period immediately prior to the granting of the licence.
The Quality and Outcomes Framework indicators for 2011-2012 are:
- The practice can produce a register of patients aged 18 years and over receiving drug treatment for epilepsy (1 point).
- The percentage of patients age 18 years and over on drug treatment for epilepsy who have a record of seizure frequency in the preceding 15 months (4 points); payment stages 40-90%.
- The percentage of patients aged 18 years and over on drug treatment for epilepsy who have been seizure-free for the last 12 months recorded in the preceding 15 months (6 points); payment stages 40-70%.
- The percentage of women under the age of 55 years who are taking anti-epileptic drugs (AEDs) who have a record of information and counselling about contraception, conception and pregnancy in the preceding 15 months (3 points); payment stages 40-90%.
The NICE menu of clinical indicators currently only includes one epilepsy indicator:
- The percentage of women under the age of 55 years who are taking anti-epileptic drugs (AEDs) who have a record of information and counselling about contraception, conception and pregnancy in the preceding 15 months.
A simple proforma (usually in the form of a computer template) can be developed. Suggested points to cover include:
- Regular medication review for adults (annual or six-monthly).
- Medication side-effects, dosage and frequency.
- Type and number of fits in the preceding year, document date of last fit.
- Pre-conception and contraception counselling in women.
- Driving advice given and documented.
Where epilepsy management is good (based on the proportion of seizure-free patients), there is an inverse relationship with the number of epilepsy-related emergency hospitalisations.
Be aware of the broader implications of a diagnosis of epilepsy:
- Social stigmatisation and occupational issues.
- Psychosocial problems: anxiety and depression are more common than in the general population.
- Developmental problems in children with early-onset seizures.
- Specific cognitive and learning difficulties impacting on education if not recognised.
- Anti-epileptic drug (AED) side-effects.
- Physical trauma secondary to seizures.
- Risk of fetal malformation associated with AEDs.
- Increased mortality rate:
- Sudden unexplained deaths in epilepsy (SUDEP) - approximately 500 deaths per annum in the UK.
- Deaths due to accidents during seizures - approximately 100 deaths per annum in the UK.
- Deaths due to status epilepticus - approximately 70 deaths per annum in the UK.
Further reading & references
- Transient loss of consciousness in adults and young people, NICE Clinical Guideline (August 2010)
- British National Formulary for Children; British Medical Association and Royal Pharmaceutical Society of Great Britain. London
- Epilepsy Action
- Epilepsy Society
- Epilepsy Scotland
- Epilepsy Wales
- Moran NF, Poole K, Bell G, et al; Epilepsy in the United Kingdom: seizure frequency and severity, anti-epileptic drug utilization and impact on life in 1652 people with epilepsy. Seizure. 2004 Sep;13(6):425-33.
- GMS Contract, General Medical Services, Dept of Health, 2009
- Epilepsy, NICE Clinical Guideline (January 2012)
- National Service Framework for long term conditions, Dept of Health, March 2005
- Epilepsy, Prodigy (June 2009)
- British National Formulary; 62nd Edition (Sep 2011) British Medical Association and Royal Pharmaceutical Society of Great Britain, London
- Drug Safety Update: Volume 2, Issue 1 August 2008, Medicines and Healthcare products Regulatory Agency (MHRA)
- Bradley PM, Lindsay B; Care delivery and self-management strategies for adults with epilepsy. Cochrane Database Syst Rev. 2008 Jan 23;(1):CD006244.
- Lindsay B, Bradley PM; Care delivery and self-management strategies for children with epilepsy. Cochrane Database Syst Rev. 2010 Dec 8;(12):CD006245.
- At a Glance Guide to the Current Medical Standards of Fitness to Drive, Driver and Vehicle Licensing Agency
- Quality and outcomes framework, British Medical Association
- Quality and Outcomes Framework (QOF), NICE 2011
- Shohet C, Yelloly J, Bingham P, et al; The association between the quality of epilepsy management in primary care, general practice population deprivation status and epilepsy-related emergency hospitalisations. Seizure. 2007 Jun;16(4):351-5. Epub 2007 Mar 28.
|Original Author: Dr Chloe Borton||Current Version: Dr Colin Tidy||Peer Reviewer: Dr John Cox|
|Last Checked: 14/03/2012||Document ID: 2428 Version: 24||© EMIS|
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