What evidence is available?
| Sources of evidence | Information Provided | Limitation of Evidence |
|---|---|---|
| Parent / Carer | First source of information and associated evidence e.g. basic information about medical management and appropriate Key Fact information. | Does not have specialist knowledge. |
| GPFR or Paediatrician / Paediatric Neurologist or Epileptic / Paediatric Nurse |
Give a profile of the seizures: type, frequency, injuries sustained; day and / or night; episodes of status; warning; nature of post-ictal phase. Also provide information on most up to date treatment and its effect and any further investigation or treatment (e.g. surgery) planned. |
It is important to determine from the parent / carer who is the individual that is regularly managing their child’s condition. This enables contact with the appropriate healthcare professional. |
Role of the specialist nurse
Those patients in tertiary care centres are likely to have access to a specialist epilepsy nurse (others are likely to be under a paediatric nurse). The role of the specialist nurse in epilepsy management is diverse. Their role comprises mainly of -:
- Improving seizure management: determining patterns of seizure activity, medication adjustment (in conjunction with the consultant) and treatment plans
- Education - general education of patients and families about epilepsy, promote compliance with medication, explain the potential for sudden unexplained death in epilepsy (SUDEP) and take measures to avoid or resolve misconceptions, agree emergency intervention plans and liase with school (determine if support or training needed),
- Liaison with consultant – to communicate problems with seizure control and highlight to the consultant those children eligible for surgical consideration,
- Other - to provide vital emotional support to patients and their families to cope with epilepsy.
