The LeDeR report - what does it say?

Sorry – I went off on one a little in my blogpost about the LeDeR report. This will be a shorter blogpost that I should have written in the first place, with a bit about the findings of the report and how they fit with what else we know.

The first thing to say is that this is a report of work in progress, as the scope of the LeDeR has only just become national, there is a big backlog of notified deaths where reviews have not yet been completed, and there is incomplete information for many deaths. For example, almost half (48%) of the 1,311 notified deaths in the 17 month period are from the North of England, where work on the LeDeR programme took off first. We will need the LeDeR programme to continue for longer, on a national basis, to get a better sense of what is happening nationally. It’s also important to bear in mind that any notification system is likely to miss the majority of adults with ‘mild’ learning disabilities, who were labelled as such in education but are not known as such to any health or social care services in adulthood.

The median ages of death (the age at which half of people have already died) in this LeDeR report are, if anything, worse than those reported in other evidence. In this report, the median age of death for men was 59 years; for women it was 58, with over a quarter (28%) of deaths happening before the person reached 50 years old (which presumably means that over 20% of deaths happen during a person’s 50s?). And this itself will over-estimate the age of death for the total population of people with learning disabilities, as the LeDeR programme does not include deaths for young children under the age of 4 years.

The original Confidential Inquiry (reporting in 2013), using a similar method, reported a higher median age of death of 65 years for men and 63 years for women, and the Mazars report estimated a median age of death of 59 years for people with learning disabilities in contact with Southern Health NHS Trust.

Different, imperfect, sources of information have reported similar ages of death. Analysis of death certificates from 2001 to 2014 reported that the median age of death for men with learning increased from 52 years in 2001 to 60 years in 2014; and increased at a slower rate for women from 53 years in 2001 to 58 years in 2014. By 2014, the gap in median age of death between men with and without learning disabilities was 19 years; for women this gap was 26 years.

Using GP records from about half of England over three years from 2014/15 to 2016/17, the life expectancy (a slightly different way of calculating length of life) of men with learning disabilities was 66 years (14 years younger than other men), and for women with learning disabilities also 66 years (18 years younger than other women). The graph below shows the age of death of boys/men and girls/women with and without learning disabilities at different ages (bearing in mind that GPs are less likely to have children with learning disabilities recorded as such on their books) – girls in particular but also boys with learning disabilities are more likely to die at every age. 

From this evidence we know that people with learning disabilities live, on average, lives 15-20 years shorter than other people. We don’t really know whether things are getting better or worse, particularly as the continued improvements in life expectancy for people generally that we’ve seen for a long time seem to be stalling for some groups of people.

The three main general causes of death reported in this LeDeR report, respiratory diseases, circulatory diseases, and cancer, are broadly consistent with those reported in the Confidential Inquiry and from other work looking at GP records, although this LeDeR report seems to be reporting proportionally more respiratory diseases as causes of death. More specifically, pneumonia and aspiration pneumonia (when food, fluid or vomit is breathed into the lungs rather than going into the stomach) are recorded as causes of death somewhere on the death certificate for 41% of the 576 people with learning disabilities for whom there were records. These infections, together with sepsis, which was mentioned as a cause of death for fully 11% of people with learning disabilities in the LeDeR report, are all illnesses that can be:

·        guarded against (for example flu vaccination – in 2016/17 41.9% of people with learning disabilities on GPs’ books had a flu jab); treatment of gastro-intestinal reflux disorder which is recorded by GPs for 7.8% of people with learning disabilities; treatment of constipation which is recorded by GPs for 13.1% of people with learning disabilities; annual health checks – in 2016/17 49.7% of eligible people with learning disabilities had an annual health check)

·        managed and treated, as long as signs of these illness are recognised quickly and treated properly

In this LeDeR report there are some really worrying clues about how services are responding (or not) to the health needs of people with learning disabilities. Overall, nearly two-thirds (64%) of people with learning disabilities died in hospital compared to just under half (47%) of people generally. This suggests more sudden, early and traumatic deaths rather than planned deaths where the person can die at home or in a hospice. Particularly worrying was the fact that more than three quarters of young people aged 4-24 years (76%) died in hospital – what is happening to these young people and their families? (I’m thinking of Connor Sparrowhawk and Oliver McGowan among many other people right now). It’s also worrying that 101 people with learning disabilities (9%) died in out-of-area placements. I don’t know of any recent information about how many people with learning disabilities are living into out-of-area placements, but this looks to me like it might be disproportionate, and at a time when the distance from home of people in inpatient services is at best not decreasing.

Finally for this blogpost, the three main themes of ‘learning points or recommendations’ are depressingly familiar for anyone who has read the Confidential Inquiry, or followed the heartbreaking inquests of Connor Sparrowhawk, Danny Tozer, Richard Handley or Oliver McGowan, or seen the all-too-regular local news reports of people with learning disabilities dying before their time – just today Mark Neary tweeted a link to this story https://www.kentlive.news/news/man-died-after-choking-sausage-1526663.amp? They are: inter-agency collaboration, including communication; awareness of the needs of people with learning disabilities among health and social care providers; better understanding and application of the Mental Capacity Act. I’ve said my piece on these in the other blogpost so I won’t say any more here. But I don’t see evidence from this LeDeR report that what’s happening now to stop people dying early is going to be nearly enough.