Epilepsy is the most commonly encountered neurological condition in people with a learning disability. There is an incidence rate of 50 to 70 people per 100,000 per year in the general population. Epilepsy associated with a learning disability has a greater prevalence, estimated to be between 14 and 24 per cent and it varies depending on the severity of the disability. The incidence rate of epilepsy in mild learning disability is between seven and 15 per cent, rising to well over 50 per cent in more severe disability.

It can be harder to achieve a complete diagnosis of epilepsy in people with a learning disability. This is because people with a learning disability often have altered cerebral functioning which may affect the way that their epilepsy presents, making a diagnosis more complex than in the general population. They are often unable to articulate what is happening to them and they can find it hard to give an accurate account of seizure activity. Carers and support workers play a vital part in providing the necessary history to aid correct diagnosis. You can empower people who have a learning disability to think about keeping a seizure diary, and describing what happened using their own words.

Anti-epileptic drugs (AEDs)

For any patient, AEDs should only be started after a full discussion of the risks and benefits. So it is important that you consult with people with a learning disability and make sure that their family and carers help them understand this information. Easy-read leaflets about epilepsy are available from Easyhealth.

When treating people with a learning disability, AEDs should normally be started at a lower dose, and doses should be titrated (measured and adjusted) more slowly than in the general population.

AEDs are associated with a range of side effects that may affect a person’s quality of life. Seizure control needs to be balanced with minimisation of unwanted adverse effects. This means that sometimes it is unrealistic for people to be seizure-free as this might result in a reduced quality of life due to the burden of medicine side effects.

All medicines used to treat epilepsy in any patients have the potential to reduce bone density with long-term treatment. This is especially true for carbamazepine, sodium valproate, primidone and phenytoin. People taking multiple AEDs or on AEDs for more than five years are at increased risk of bone loss. In addition, people with a learning disability have an increased prevalence of lower bone density compared to the general population. Promoting lifestyle measures to improve bone health and reduce the risk of osteopenia, osteoporosis and fractures associated with seizures is therefore beneficial. This should include eating a balanced diet with good sources of calcium, regular exercise, going outside regularly, and either not drinking alcohol or drinking at low risk levels. Smoking cessation should be explored if applicable.

The BNF states that there is an increased risk of teratogenicity (congenital malformations) associated with the use of AEDs and sodium valproate is associated with the highest risk. There is also an increased risk of teratogenicity with phenytoin, primidone, phenobarbital, lamotrigine, and carbamazepine. Topiramate carries an increased risk of cleft palate if taken in the first trimester of pregnancy. Therefore it is important that females who are sexually active and have childbearing potential consult their doctor so that their medicines can be reviewed before trying to conceive. This is a potentially sensitive topic that will require tactful discussion.

The Medicines and Healthcare products Regulatory Agency (MHRA) has information on how to communicate the risks of abnormal pregnancy to women with a learning disability who may be pregnant or trying to conceive.

Further information

• For more information and access to all the learning disabilities activities, visit: cppe.ac.uk/learningdisabilities.
• Access the CPPE learning disabilities e-challenge at: cppe.ac.uk/e-challenge.

Now you've completed part three of this learning disabilities module, move onto part four:

Part four: Behaviour that challenges.