Epilepsy in learning disability guidelines published

epilepsy cover

There are a number of changes underway in the way services for people with epilepsy are organised and delivered, and this new guideline includes a number of recommendations on service provision, the use of newer antiepileptic drugs and guidance in specific areas such as pregnancy and contraception, learning disability, young people.

The chapter on epilepsy and learning disability identifies a number of particular challenges in providing information and support, for example issues relating to mental capacity   The authors point out that there are still large gaps in the available evidence with much of the evidence identified described as of poor methodological quality. They draw attention to the lack of placebo-controlled double blind trials.

The guidelines address a number issues, setting out the nature of the evidence base before making appropriate recommendations.

For example, ‘specialist’ learning disability versus ‘non-specialist’ care, difficulties with diagnosis, in particular the danger of confusing stereotypic or other behaviours with seizure activity; difficulties associated with people tolerating investigations, for example EEG; neuroimaging. The guidelines talk specifically about issues relating to care planning, and in particular the need to pay close attention to the possibility of adverse cognitive and behavioural effects of Anti epileptic drug therapy. The main body of the chapter however is given over to consideration of pharmacological management

The Guidelines’ authors looked for any randomised controlled trials (RCTs) which compared effectiveness of pharmacologcial interventions including pregabalin, zonisamide, lacosamide, lamotrigine, gababentin, oxcarbazepine, tiagabine, levetiracetam, topiramate, vigabatrin, phenytoin, phenobarbital, clobazam, felbamate, acetazolamide, sodium valproate, primidone and carbamazepine. On the basis of this review they state that there is “no evidence to suggest epilepsy in the learning disabled population requires any different consideration with regard to treatment compared to those without learning disability.” However, it must be stressed that people with learning disabilities may be susceptible particularly to cognitive side effects of anticonvulsant medication.

The authors go on to make several recommendations relating to personalised care planning; appropriate consultation lengths, and avoiding discrimination. In addition, attention is drawn to the need for risk assessments and the higher mortality rate in people with learning disabilities and epilepsy than in people with epilepsy who do not have learning disabilities, although epilepsy is not the major cause of death in this group.

The Epilepsies:The diagnosis and management of the epilepsies in adults and children in primary and secondary care,  Pharmacological Update of Clinical Guideline 20, National Clinical Guidance Centre

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John Northfield

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

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