Nurse reviews of patients with epilepsy Epilepsy is the most common serious neurological disorder seen in primary care but with effective management, up to 70% of people with active epilepsy could become seizure free.1 Sudden Unexplained Death in Epilepsy (SUDEP) is the main cause of seizure related deaths 2 It is unclear what causes SUDEP, but the more frequent the seizures, the higher the risk. It is likely, therefore, that if more people with epilepsy had their treatment optimised to achieve consistently good control of their seizures, the incidence of SUDEP could be reduced 3 Patients with a new diagnosis of epilepsy need urgent referral to an epilepsy specialist 2 with AEDs being initiated by epilepsy specialists 2 . However, the primary care team has an important role in reviewing patients who are taking AEDs to ensure that • The patient’s epilepsy is well controlled • Unnecessary side effects are not experienced • Referral for AED withdrawal or drug alteration is considered if appropriate • The patient is receiving the support and information they require regarding issues such as employment and driving • Women of childbearing age receive pre-conceptual and on-going contraception advice and potential drug-interactions The principle of following out epilepsy reviews through a structured management system is • To provide patients with information about epilepsy and their medication • To review anti-epilepsy medication (AEDs) to include potential side effects; consistency of supply; drug interactions • To meet GMS QOF targets • To provide women with information on pre-conceptual advice • To be aware of when to refer for further care The GMS contract encourages the compilation of a register of patients receiving drug treatment for epilepsy and sets three quality indicators with financial rewards.5 These quality indicators aim to encourage the establishment and delivery of a structured management system for patients with epilepsy in primary care. They award points for

the production of a register of patients receiving drug treatment for epilepsy and for the percentage of patients age 16 and over on drug treatment for epilepsy who: • Have a record of seizure frequency in the previous 15 months • Have a record of medication review in the previous 15 months • Have been seizure-free for last 12 months recorded in last 15 months Review of patients with epilepsy can have a positive effect on seizure control, side effects experienced and psychosocial issues, and can lead to reduced mortality. Patients who are not reviewed may have an incorrect diagnosis or be receiving suboptimal treatment resulting in • Continued seizures • Side effects from medication • Poor adherence to prescribed medication • Inappropriate medication • Lack of awareness of specific issues • Reduced employment opportunities • Increased stigma

Protocol for nurses carrying out epilepsy reviews Aims To establish and maintain an epilepsy register To offer annual reviews for patients with active epilepsy To review drug treatment To provide information on contraception for women of childbearing age To provide information on lifestyle and safety issues To be aware of referral guidelines Register In order to offer annual review to patients with epilepsy3+4, the first essential step for any primary care team is to identify all its patients with epilepsy. This can be done by

carrying out an audit of patients on the practice register who have active epilepsy requiring AEDs Using a combination of computer and manual review of patients’ records: • Identify patients taking anti-epileptic drugs (AEDs) (must include ALL AEDs – even some of the ‘older’ treatments) • Identify patients with an existing diagnosis of epilepsy via patient records (take care that a single seizure does not constitute a diagnosis of epilepsy) • Exclude patients taking AEDs for conditions other than epilepsy i.e. gabapentin for neurological pain • Collate a register of people with epilepsy in the practice and use Read Code #F25 • Patients with a ‘history of epilepsy’ but who are not ‘active’ - use Read Code #1473.00 • Patients under 16yrs should be coded as having epilepsy but will not be included in QOF data Note – patients with ‘a history of epilepsy’ may have been seizure free for many years and will not be included in QOF renumeration however it is good practice to attempt to review these patients. After 3years of being seizure free, the Read Code #1473.00 should be used and the original code #F25 should be deleted. All patients with a diagnosis of epilepsy should have an annual review by the practice nurse with referral to the GP as appropriate. Invitation for annual review This can be done in a variety of ways – sending out letters (example letters are available in the Epilepsy Action Toolkit (www.epilepsy.org.uk or email [email protected] or telephone 0808 800 5050) or via repeat prescriptions. If letters are the choice of communication then it is important to document • 1st letter Read Code #9of0 • 2nd letter Read Code #9of1 • 3rd letter and telephone contact Read Code #9of2 If the patient fails to attend after 3 invitations they can be excluded using Read Code #9h62.00

Annual review Review seizure type and include date of last seizure Some Read Codes may include #6675 – fit frequency #667F – seizure free >12 months (this is QOF data) #667P – no seizures on treatment

#667Q – 1-12 seizures a year #667R – 2-4 seizures a month #667S – 1-7 seizures a week #667T – daily seizures #667V – many seizures a day Refer to GP if any of the latter Q-V as patient may need further drug management or referral to secondary care Review of Anti-Epilepsy Drugs (AEDs) Is the patient taking their prescribed medication? Explore reasons why not (nonadherance to prescribed medication is recognised to be an important cause of poor seizure control). Is the patient having any side effects to medication ?(use BNF to familiarise yourself with the common side effects of patient’s medication before you review patients) - a list of AEDs is available from the Epilepsy Action UK Toolkit Are women of child bearing age being prescribed folic acid 5mgs? Refer to GP if any problems identified. Lifestyle Implications – provide leaflets on the following (www.epilepsy.org.uk)

Driving Does the patient drive? If they do, are they aware of the driving regulations? #8CA9 – patient advised to inform DVLA Employment Is the patient in employment? You may need to provide information about employment #667G – epilepsy restricts employment Safety in the home / leisure / school Is the patients’ spouse/work colleague aware of first aid procedure if they should have a seizure? Do they inform spouse etc when bathing – encourage showering for safety reasons etc Sport – many people with controlled epilepsy will have no problems with carrying out sporting activities and exercise is to be encouraged but if the exertion is more than usual

or new it may cause increased stress and induce seizures. Patients should be aware and given advice if necessary. Precipitating factors Whist stress does not cause epilepsy it may lead to seizures so patients need to be aware of factors which may lead to increased stress and try to take measures to cope. Exam time and lack of sleep may induce seizures so discussion needs to take place around coping strategies. Women and Epilepsy The majority of women with epilepsy have problem-free pregnancies and healthy babies; however the diagnosis of epilepsy and the use of AEDs in women can present particular problems • •

• • •

Major (e.g.spinal bifida) and minor (e.g.underdevelopment of the mid-face resulting in features such as broad nasal bridge) congential malformations occur more commonly in infants exposed to AEDs during pregnancy Women taking enzyme inducing AEDs and the combined oral contraceptive (COC) pill are at increased risk of pill failure due to an accelerated oestrogen metabolism. This may result in breakthrough bleeding and/or unplanned pregnancy. Women who use Depo-provera 150mgs should receive their intramuscular dose every 10weeks rather than 12weeks Some AEDs can produce cosmetic side effects such as hirsutism and coarsening of the facial features with phenytoin and weight gain with sodium valproate Women of childbearing age should consider taking folic acid 5mgs daily to prevent neural tube defects)

Women with epilepsy of childbearing age therefore need additional advice and counselling about issues such as contraception and pregnancy. Epilepsy specialist nurses are ideally placed to provide pre-conceptual advice and patients are encouraged to access them. Encourage women who are pregnant to register with www.epilepsyandpregnancy.co.uk

Aide memoire for nurse assessment of patients with epilepsy

Is the diagnosis correct?

Refer to GP

Is the patient taking their medication correctly?

Patient having unacceptable side effects to their treatment

Is the patient having side –effects to medication?

Patient is seizure free