LEDER is the name of the Learning Disability Mortality Review Programme introduced in England in 2015. It uses a ridiculous presentation of letters that no-one has ever been able to explain LeDeR. This programme was poorly designed, poorly resourced and poorly led from the outset. A criticism that has been publicly shared by many people.
The Annual Reports that the programme produces are here, there are only three so far and the first was published on the day of the local election results, having been delayed for several months, resulting in fierce denials from NHS England that they were trying to cover up its contents.
LEDER Annual Report 2016-17 (published May 2018)
LEDER Annual Report 2018 (published May 2019)
LEDER Annual Report 2019 (published July 2020)
In the first ‘annual’ report (a term they seem to use very loosely), notifications were included for the period July 2016 to November 2017. During that time 1,311 deaths were reported and 103 reviews completed.
The second ‘annual’ report rolled up the data and reported for the period 1 July 2016 to 31 December 2018, 4,302 deaths were notified. Reviews had been completed for 25% of those deaths (1,081). They stated reviews were in progress for 37% of notified deaths (which they claimed was a third, not the last time I studied maths it wasn’t) but 38% of notified deaths (which they referred to as ‘almost two fifths’ very confusing messaging going on here) hadn’t even been allocated to a reviewer. What this actually means is that all the deaths notified to the programme by November 2017 still hadn’t been reviewed over a year later.
In the most recent annual report it was reported between 1 July 2016 and 31 December 2019 the number of deaths notified to the LEDER programme was 7,145. Of those only 45% (3,195) had been reviewed. In other words, 55% of deaths notified to the programme were not reviewed.
Many people have written about and responded to the LEDER programme’s lacklustre performance over the years. My own curated blog posts are below, writing from others are included in the links section.
In March 2021 a review by Ipsos MORI was published briefly on NHS England’s website, before swiftly being removed once HSJ made enquiries of them. This lack of transparency is another key feature of the LEDER programme.