This audit is particularly relevant where family carers and professional care staff look after people with intellectual disability and epilepsy, at home, in day care, in respite care and in the community.
Epileptic seizures occur in a third of patients with severe intellectual disability. Previously it was common practice to attempt to treat status epilepticus with diazepam per rectum, but this can be difficult without appropriate training for carers and be embarrassing and undignified for the patient.
No national standards were available at the time. Seven good-practice standards were set, after discussion with professionals and carers:
ᐅ Adequate information is provided to carers regarding
▹ identification of a prolonged seizure
▹ identification of repeated seizures
▹ recognition of seizure type
▹ assessment of level of consciousness.
ᐅ The rationale for use of diazepam per rectum is explained.
ᐅ Clear written guidelines are provided for the timely administration of per rectum diazepam in relation to the first and second doses.
ᐅ Adequate training is given on the administration and dose of per rectum diazepam.
ᐅ Adequate information is provided on recognising the following complications after prolonged or repeated seizures:
▹ convulsive status epilepticus
▹ non-convulsive status epilepticus
▹ aspiration and breathing difficulties
▹ in addition, adequate explanation is given on monitoring pulse, temperature and breathing after prolonged or repeated seizures.
ᐅ Adequate information is provided on when to call 999 for an ambulance.
ᐅ From the guidelines provided and training received, does the carer feel confident
▹ in identifying when per rectum diazepam is indicated
▹ with the procedure
▹ in identifying any complications that may result from administration of this drug
▹ in timing the decision to seek emergency help (dial 999).
All patients with intellectual disability and epilepsy identified as receiving or being prescribed diazepam per rectum for prolonged and/or repeated seizures over the audit period were included. Questionnaires were sent out to home carers, the day centre key worker or other staff and staff of respite care homes. An explanatory letter was provided explaining the aims and scope of the audit.
The percentage of the sample meeting each standard was calculated.