We exist to improve the lives
of everyone affected by epilepsy

1.4.2 People with learning disabilities

Relevant tool: A.14

Learning disability includes the presence of:1

  • a significantly reduced ability to understand new or complex information or learn new skills (impaired intelligence)
  • a reduced ability to cope independently (impaired social functioning).

Up to a quarter of people with epilepsy have learning disabilities and a half of people with learning disabilities have epilepsy.2 The prevalence of epilepsy is estimated to lie between 15 and 30% among people with learning disabilities.3

People with epilepsy who have learning disabilities should receive the same support and care for their epilepsy as the general population. This includes access to all therapeutic options. In addition, those with learning disabilities may also need the care of the learning disabilities team.3

In the management of people with learning disability and epilepsy, the following considerations should be made:

  • allow time for longer consultation times – consider double appointments3,4
  • consider home visits for those who might be distressed by attending a practice
  • ensure that the patient is accompanied by a carer who knows the patient and who can bring information about seizure type and frequency, possible side-effects of medication, compliance and concordance, and general health and behaviour4
  • provide information in an accessible format4
  • enable people with learning disabilities and their carers to take an active part in developing their care plan where appropriate: this may include primary care led coordination of community care.3Speech therapists can also be of help
  • ensure that possibilities of adverse cognitive and behavioural effects of AED therapies are recorded and the patient is referred to their epilepsy specialist for a treatment review3
  • discuss the higher risk of mortality for people with learning disabilities and epilepsy with the patient and their family/carers3
  • ensure a risk assessment has been carried out, including risk of bathing and showering, preparing food, using electrical equipment, managing prolonged or serial seizures, social impact, SUDEP and suitability of independent living.3 Some learning disability teams have occupational therapists to assist here
  • ensure healthcare teams are aware of the interactions between AEDs and antipsychotics, which are often used in this population, and the inappropriate use of rescue medication
  • establish a multidisciplinary approach to care that is delivered by professionals with an expertise in epilepsy. Community learning disability nurses have an important role in liaising between the specialist services and patients and carers4
  • ensure the person is transferred to a transitional care team at the appropriate time.5 In some trusts, young people with learning disabilities enter the transitional care pathway later than their peers.

Note on misdiagnosis:6
Misdiagnosis of epilepsy among people with learning disabilities is an estimated 32–38%. The reasons given for such high misdiagnosis rates include misinterpretation of behavioural, physiological, syndrome-related and medication-related events by parents, paid carers and healthcare professionals.

References

1 North Yorkshire County Council, 2001. Valuing People: A New Strategy for Learning Disability for the 21st Century. [online] (Accessed 01/08/2011.)

2 de Boer HM et al. 2008. The Global Burden and Stigma of Epilepsy. Epilepsy Behaviour. 12: 540-6

3 National Institute for Health and Clinical Excellence (NICE), 2012. The epilepsies: The diagnosis and management of the epilepsies in adults and children in primary and secondary care. [CG137]. London: NICE.

4 Scottish Intercollegiate Guidelines Network (SIGN), 2003. Diagnosis and management of epilepsy in adults. A national clinical guideline. Edinburgh: SIGN.

5 McDonagh JE, Jordan A, 2006. Transition: Getting It Right for Young People. Clinical Medicine. 6: 497-500.

6 Iddon P et al. 2011. The Misdiagnosis of Epilepsy in People with Intellectual Disabilities: A Systematic Review. Seizure. 20: 101-6.

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