Care Of The Person With Epilepsy

Epilepsy services have been criticised for not providing appropriate, high-quality care, with services portrayed as having little direction and ineffective communication channels between primary and secondary care (Ridsdale 2000). In addition, the Department of Health has recently published its Health Action Plan, Improving Services for People with Epilepsy (Department of Health 2003). This was in response to Hanna et al.'s (2002) report on epilepsy-related deaths. Hanna et al. (2002) report that the risk of premature death in adults with epilepsy is two to three times greater than in the general population. The Action Plan has three main targets for improvement:

• care, management and treatment of epilepsy

• information provision

• pathology and post-mortem investigations.

Hanna et al. (2002) reported that 54 per cent of all adults were receiving poor and inadequate care. Of these, 20 per cent had inadequate AED management, 5 per cent had no evidence of a care package and 6 per cent of adults with learning disabilities were 'lost' in the transition from child to adult services. They also reported poor communication between healthcare professionals and reported that only 10 per cent of families were contacted by a specialist after an epilepsy-related death.

Learning-disability specialists, students and carers all need to increase their awareness of the higher risk of death for people with learning disabilities and epilepsy. Stokes et al. (2004) indicate that all adults with learning disabilities and epilepsy should have a comprehensive risk-assessment package. They suggest that it should include:

• bathing and showering

• preparing food

• using electrical equipment

• managing prolonged or serial seizures

• the impact of epilepsy in social settings

• the suitability of independent living, where the rights of the individual are balanced with the role of the carer.

(*SUDEP: Sudden Unexpected Death in Epilepsy)

Every adult with a learning disability and epilepsy should be reviewed annually (or sooner if the person's health condition dictates) by an epileptologist, to ensure that treatment regimes are appropriate and helpful in the management and control of seizures.

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