14 year-old Bethany Jayne Clemens (DOB: 12.01.1997) was the eldest child of Emma Oakes. She lived in East Looe and was a student at Dame Hannah Rogers School, a special school for children with disabilities, in Ivybridge. Bethany had profound mental and physical disabilities. At the age of 1 she was diagnosed with RETT syndrome, a genetic disorder that causes severe life long neurological disability. (For further information see rettuk.org). She also had breathing difficulties, which are a characteristic of RETT syndrome, as well as severe, intractable epilepsy causing frequent seizures.
Bethany required 24 hour care. During term time Bethany boarded at school 4 nights a week, plus one weekend in four. The rest of the time she spent with her family. She also had regular stays at Layland Respite Centre in Liskeard.
On 11th December 2001, just after midnight, Bethany was discovered dead in her bed at school, less than a month before her 15th birthday. The Coroner for Devon was notified and a post-mortem was carried out. There was no evidence that Bethany suffered an epileptic seizure before dying, and no evidence that she had suffered an obstruction to her breathing or infection. The pathologist’s conclusion was that she had suffered a Sudden Unexplained Death in Epilepsy (SUDEP).
SUDEP is where a person with epilepsy dies suddenly and no other cause of death is revealed. For individuals with severe epilepsy the risk of SUDEP is 1: 100-300 per year. Its cause is unknown. For further information see sudep.org.
Guidelines from NICE, the National Institute for Health and Clinical Education, state that information about SUDEP should be given to people with epilepsy, their families and carers. It also states that there should be discussion of action to reduce the risk of SUDEP, for example by providing night-time monitors. See http://guidance.nice.org.uk/CG137
Bethany’s mother, Emma Oakes, knew nothing about SUDEP until after her daughter’s death. The risk was never discussed with her and none of the care plans drawn up for Bethany by the numerous professionals involved in her care referred to it.
Bethany was provided with a standard night time care package whilst at school. On the basis of evidence provided so far it seems it consisted of one nurse and one health care assistant responsible for 6 children. Each child would be in his/her bedroom and the staff would be based at a nursing station. There were auditory baby monitors and staff were required to check the children at regular intervals during the night.
In contrast, when Bethany was at the Layland Respite Centre she was assessed as requiring a very high level of supervision overnight. Her bed was in close proximity to the nursing station, she was checked at 15 minute intervals and had an oxygen monitor which would detect any interruption to normal breathing patterns.
When at home Bethany’s mother stayed with her at all times overnight.
Emma is anxious to find out why the professionals involved in Bethany’s care did not follow the NICE guideline in relation to the risk of SUDEP, and why the standard of night-time care in a specialist school was so much lower than that provided at home and the Respite Centre. If she had been aware of the risk of SUDEP, and if she had known what night-time care was being provided by the school, she would have done everything in her power to ensure that Bethany would be kept safe and that the risk of her dying in bed would be kept to a minimum.