Information on SUDEP should be included in literature on epilepsy to show why preventing seizures is important. Tailored information on the person's relative risk of SUDEP should be part of the counselling checklist for children, young people and adults with epilepsy and their families and/or carers.
The risk of SUDEP can be minimised by:
- optimising seizure control
- being aware of the potential consequences of nocturnal seizures.
Tailored information and discussion between the child, young person or adult with epilepsy, their family and/or carers (as appropriate) and healthcare professionals should take account of the small but definite risk of SUDEP.
Is this NICE guidance followed by Neurologists and related personnel? Let us look at a major study in 2005 (a year later) undertaken by B Morton, A Richardson,, S Duncan at Hope Hospital in Salford. (Coincidentally Hope Hospital is where our children were born.) Reported in the British Medical Journal, we only have to read as far as the first table which is the analysis of response from medical personnel.
|*Four responses not analysed.|
|Discuss SUDEP with all patients||18||4.7|
|Discuss with majority of patients||99||25.6|
|Discuss with very few of my patients||237||61.2|
|Discuss with none of my patients||29||7.5|
|Total no. of respondents||383||100|
If we simplify this table we can see that around a quarter of patients are told, and three-quarters are never told. So how does this reflect the NICE guidance? The NICE guidance specifically states that information can be tailored to the patient, it does not state that the patient should not be told.
I would argue, from this, that the NICE guidelines should be altered to stop our medical specialists having any room for manoeuvre. They seem to interpret "tailoring" as "avoiding". They seem to think that giving out information that might just save a life is somehow wrong.
My daughter died in part because she was never told. My daughter died in part because we were never told. Yes, she might still have died. But right now there are a wide range of measures that could have helped manage any risk - with minimal effect on our daughter's lifestyle. And today, armed with knowledge, she might just be alive.