As many of you who manage narcolepsy patients will know, there have been increasing difficulties in persuading commissioning groups that the controversial drug sodium oxybate is a worthwhile and effective treatment for severe narcolepsy. The vast majority of requests are turned down, predominantly due to a perceived lack of cost effectiveness. A recent court ruling and an editorial letter in the British Medical Journal may be of interest. The former relates to an adolescent being refused the drug despite persuasive arguments from her paediatric neurologist, provoking an appeal in which the high court judge overturned the negative decision and ruled against NHS England. The link to the wording of the judge’s ruling can be found here.
The BMJ editorial outlines the inequities and confusion over the current processes for sanctioning prescribing of sodium oxybate. In particular, how “exceptionality” can or cannot be defined is addressed. A link to the article is www.bmj.com/content/353/bmj.i2367
Non-respiratory sleep disturbance among children with neurodisabilities is common and a range of interventions, both pharmacological and non-pharmacological, have been developed to address these. Previous systematic reviews on the effectiveness of these interventions have typically focused either on particular interventions (e.g. melatonin) and/or specific sub-groups (e.g. autism). NIHR’s HTA programme has recently commissioned a holistic systematic review to identify and evaluate evidence on the effectiveness of pharmacological and non-pharmacological interventions in the management of sleep disturbance across all children with neurodisabilities. Additional objectives are to synthesise evidence regarding the acceptability and feasibility of interventions, and to identify ‘promising interventions’. The review is being carried out by a team at the University of York with input from senior sleep practitioners based in paediatrics, CAMHS and the third sector. It commenced in February 2015 will take 12 months to complete. For further information, see http://www.nets.nihr.ac.uk/projects/hta/1421202 or contact Gemma Spiers (firstname.lastname@example.org).