Learning disabilities

Acknowledgments

Epilepsy Action is indebted to Heather Gregory, a specialist nurse for people with learning disabilities, who provided much of the information which this webpage is based on. Thanks also go to Jon Sutcliffe and Jenny Kelly, specialist epilepsy nurses, for their help and advice.

Introduction

What is a learning disability?

People with learning disabilities find it more difficult to learn and understand than people without learning disabilities. They may find it hard to use what they have learned in practical ways. Because of this, they are likely to need help and support with everyday living skills.

As with any group of people, there is a wide variation in the abilities of people with learning disabilities. Some people may need high levels of care; other people, with some support, are able to live quite independently. The words mild, moderate, severe or profound are sometimes used to describe these different levels of learning disability. People with a learning disability are people first and foremost, each with their own unique personalities.

Some people with learning disabilities prefer the term learning difficulties, although in the UK that tends to be used to describe specific learning problems.

A learning disability cannot be cured; it is a life-long condition.

The causes of learning disabilities

Causes of learning disability include genetic factors, infection during pregnancy, shortage of oxygen or brain injury at birth, brain infections or brain damage after birth. In nearly a half of cases, the cause of the learning disability is unknown.

The link between learning disabilities and epilepsy

Learning disabilities can be caused by damage to the brain. This damaged part of the brain can then become irritable and provide a focus for epileptic seizures. The resulting seizures, however, may not appear until many years after the damage occurred. Usually epilepsy does not cause learning disabilities. However, having many and/or severe seizures over a length of time can cause damage to the brain. This in turn can lead to learning disabilities.

In some cases epilepsy and learning disabilities can both be a part of a syndrome. (A syndrome is a group of signs and symptoms that, added together, indicate a particular medical condition.) Examples of syndromes where epilepsy and learning disabilities are both present are Rett’s, Sturge-Weber, Lennox Gastaut, and Landau Kleffner syndromes. People with Down’s syndrome are at an increased risk of developing epilepsy in later life.

Diagnosis and treatment

This page is mainly about epilepsy diagnosis and treatment in the UK. If you are looking for information about diagnosis and treatment in other countries, then please contact your local epilepsy organisation who should be able to help you.

NICE Guidelines

The National Institute for Health and Clinical Excellence (NICE) is part of the National Health Service (NHS.) It is an independent organisation responsible for providing national guidance on treatments and care for people using the NHS in England and Wales.

Their guidance is intended for healthcare professionals, patients and their carers to help them make decisions about treatment and healthcare. The NICE guidelines on the treatment of epilepsy, published in October 2004, state that people with learning disabilities should have the same access to treatment for their epilepsy as anybody else.

The difficulties of diagnosing epilepsy

Epilepsy can be difficult to diagnose in anyone. Reasons for this include the fact that there is no specific test available; the diagnosis of epilepsy is mainly based on descriptions of the attacks given by the person themselves and, if available, eye witness accounts.

Diagnosing epilepsy in someone with learning disabilities can be even more difficult. For example, some people with learning disabilities may behave unusually or have movement disorders that could be mistaken for epileptic seizures. They may find it hard or impossible to describe what they have experienced. However, the correct diagnosis is essential in ensuring the person receives the most appropriate treatment.

• More information on how epilepsy is diagnosed.

Referral to a specialist

A person with a learning disability, who may have epilepsy, should be referred by their GP (family doctor) to a professional with expertise in epilepsy. This may be at a general epilepsy clinic or at a specialist epilepsy clinic for people with learning disabilities.

Some people with learning disabilities, already diagnosed as having epilepsy, may never have seen an epilepsy specialist. 

If someone with learning disabilities has had epilepsy for some time, it is equally important that they receive regular reviews of their epilepsy and treatment. The NICE Guidelines recommend that this is done annually. An epilepsy assessment should be included in the first consultation or review.

Some things that might be discussed:

• if epilepsy has not yet been diagnosed, when the seizures occurred;
• if the person already has a diagnosis of epilepsy, when the epilepsy began;
• any possible known cause(s);
• seizures types, frequency, and triggers;
• nature of the person’s learning disabilities;
• any associated physical or medical problems they may have;
• any behavioural issues;
• information about any current anti-epileptic and other medication such as dosages, when and how it is taken and any side-effects;
• information about any previous anti-epileptic medication and reasons for stopping it, if this is applicable;
• dealing with seizures;
• the need for, or results of, tests such as EEG, CT, MRI and
• the effect the person’s epilepsy and learning disabilities have on their everyday life.

Treatment

It is important that this information is shared between the person with the learning disabilities, and everyone who has contact with them who may need to know. This will help to ensure that there is a co-ordinated approach to meeting the needs of the person with learning disabilities and epilepsy.

The main way of treating epilepsy is with anti-epileptic medication (AEDs). Doctors generally prefer monotherapy (using one AED at a time). When monotherapy doesn’t work, polytherapy (more than one drug) is usually the next step.

Because it is thought that AEDs do not all work in exactly the same way, it may be that each drug could provide very different benefits which, when combined, could improve seizure control.

Many doctors will be reluctant to suggest taking more than two drugs at a time. This is because it is rare for three or more drugs to control seizures any better than two drugs. And, most importantly, the more drugs that are taken, the more risk there is of the person experiencing side-effects.

People with learning disabilities often have epilepsy consisting of many seizure types. This can be difficult to treat with anti-epileptic medication. Additionally, some seizure types, including complex partial seizures, are more resistant than others to medication. Complex partial seizures tend to be common in people with learning disabilities, because this type of seizure and learning disability can both occur as a result of damage to the brain.

Drug level monitoring

Sometimes it can be useful to measure serum levels of AEDs by taking a blood sample. Serum levels show the amount of a drug in the body. If the serum levels of AEDs are too high, it may cause someone to have unpleasant side-effects; if the serum levels are too low, the drug may not work properly to control the seizures.

Drugs can produce very different blood level readings in different people, even if they take exactly the same amount of drugs. This is because drug levels in the blood depend not only on the dose taken, but also the rate at which it is eliminated from the body (which is different in each person).

Drug level monitoring can help to give an idea of how their AEDs might be affecting someone with epilepsy and learning disabilities. If they need help with communicating how they are feeling, it may not be outwardly apparent if they are experiencing side-effects from their medication. Drug level monitoring can also be useful when someone is changing from one AED to another.

Drug levels can only be used as a guide, and some AEDs are not suitable for measuring in this way. Therefore a change of dosage should not be made on the basis of drug levels alone, but also on how the person feels and appears.

It is important to look out for any other symptoms that could be a sign that the dosage is too high, such as drowsiness or unsteadiness. Some side-effects, however, can be very difficult to observe in a person with learning disabilities, especially if the person cannot tell you how they are feeling. This is why it is important to carefully observe any changes in the person and to keep a diary of any such changes.

Vagus nerve stimulation

Vagus nerve stimulation (VNS) is a treatment for epilepsy where a small device (similar to a heart pacemaker) is implanted under the skin in the chest area. This is attached to a lead which is connected to the vagus nerve in the side of the neck. The stimulation of the vagus nerve can reduce the frequency and intensity of seizures.

• More information about Vagus nerve stimulation

Status epilepticus and individual treatment plans

Each person with epilepsy and learning disabilities should have an individual treatment plan which gives detailed instruction about when and how to give emergency treatment. People with learning disabilities often receive care from a wide range of service providers and it is important that they all know what to do in the case of an emergency. The individual treatment plan can provide this essential information. An epilepsy or learning disability nurse may be able to help draw up a plan. Individual treatment forms are available through the Epilepsy Helpline 0808 800 5050, helpline@epilepsy.org.uk

Most seizures last for a short time, stop of their own accord, and do not require emergency intervention. Occasionally, however, seizures are prolonged (five minutes or more) or one seizure follows another without the person regaining consciousness in between (called status epilepticus). In this instance emergency treatment is required. Medication, such as rectal diazepam, can be prescribed for emergencies, without the need for hospital admission. Also, although buccal midazolam is not yet licensed for the treatment of epilepsy in the UK, there is an increasing trend for doctors to prescribe this drug as an emergency treatment.

• More information about treatment

Consent

When beginning any treatment plan, it is essential that the person with learning disabilities gives their informed consent, if they are able to do so. Where they do not have the capacity to give consent to treatment, doctors must be able to demonstrate that the treatment is in the person’s best interests.

Planning for the future

In 2001 the Department of Health in the UK published a White Paper: Valuing People: A New Strategy for Learning Disability for the 21st Century. This paper emphasises the importance of people with learning disabilities having the same access to services as everyone else. It means continually listening to how they themselves wish to live their life and focusing on what is important to them now and for the future.

In terms of epilepsy, this would include helping the person with a learning disability to consider how their epilepsy affects their life. Under this White Paper, it is planned that everyone with learning disabilities will eventually have a Health Action Plan, so that all their health needs can be addressed.

Other health care needs

People with learning disabilities have higher health care needs than many other people. They can have a number of health problems and often have a physical disability, such as cerebral palsy, as well. Where these health problems are not dealt with, they can affect a person’s epilepsy.

Examples of other health care needs: 

• feeding and swallowing difficulties, leading to difficulties in taking anti-epileptic and other medication
• poor nutrition which can make epilepsy worse
• ailments such as constipation and urine infections which can make epilepsy worse. It is often difficult to identify these infections and the first sign may be an increase in seizures.

It can be helpful to keep a written record or seizure diary of when seizures happen. This should include the dates and how severe they were. Any other details such as having a late night, being unwell or, for a woman, having their period, may also be useful to record, as these are known triggers of epileptic seizures.

Information and support

Community teams for people with learning disabilities (CTLDs)

In the UK CTLDs are made up of different professionals who provide help and support to people with learning disabilities, such as nurses, social workers, physiotherapists, occupational therapists, speech and language therapists, psychologists and psychiatrists. CTLDs are also able to refer people to other professionals, as appropriate. In the UK CTLDs can be found locally and people may be referred to them by their GP, specialist or social services. You can usually contact them direct (details in The Phone Book).

To find out more about services for people with learning disabilities in your area of the UK, contact your local Citizens Advice Bureau, social services or library.

Organisations which can offer help and/or advice

• Mencap
• British Institute of Learning Disabilities
• Foundation for people with learning disabilities
• Carers UK Carers line

Books for people with learning disabilities

Finding out about epilepsy
Published by Epilepsy Action. Available for sale in our webshop or through the Epilepsy Helpline.

Getting on with Epilepsy
Gaskell Publications. Available through Royal College of Psychiatrists.