No rest for the (lay) self congratulatory. Clearly. A few days after posting about #JusticeforLB related achievements, the Guardian removed their front page story about non-investigated NHS related deaths. Because of complaints (plural). Any naivety we entertained around other NHS Trusts learning from Southern (Sloven) Health NHS Foundation Trusts heavy handed and inappropriate approach to the Mazars review, disappeared. [I know..]

We’ve heard, on the grapevine, that a few Trusts are taking the Mazars/Guardian story findings seriously. And proactively exploring their own practices in relation to deaths of learning disabled patients. This is bloody brilliant.

The challenge to the Guardian story is deeply depressing though. Headline figures of the number of deaths investigated compared to number of (allegedly) unexpected deaths (from the now removed Guardian story) remain harrowing:

Somerset Partnership NHSFT 0/146
Northamptonshire NHSFT 0/63
Rotherham, Doncaster and South Humber NHSFT 0/28
Leicestershire Partnership NHSFT 1/116
Dorset Healthcare University NHSFT 2/97
Derbyshire Healthcare NHSFT 1/23
Sheffield Health and Social Care NHSFT 1/23
Leicestershire Partnership NHSFT 1/13
Penine Care NHSFT 1/10

These figures are from a Freedom of Information (FOI) request by the Guardian that asks different questions to the Mazars review. The latter found that Sloven investigated less than 1% of the total deaths of learning disabled people under their care. Less than 1%... We don’t know the exact questions the Guardian asked but whatever questions, it’s blooming clear there’s an almighty stench here. With a range of whiffs.

Some published challenges to the Guardian piece;

Somerset: these deaths were expected not unexpected.
Northamptonshire: these deaths were expected not unexpected.
Penine: the figures provided related to community and not inpatient provision.

Wow. What (particularly) stinks here is that the Mazars review, subject as it was to unprecedented (and, at times, offensive) levels of scrutiny, contains the answers to pretty much any challenge offered by Somerset, Northants and the like to their death practices. It clearly states that Initial Management Assessment (or whatever these tick box exercises, completed within a day or so of death, are called across different trusts) are not ‘an investigation’.

There is a circularity here of course. The filling in of this initial paperwork flags up that there is some level of unexpectedness, that ‘an incident’ has occured. That this is the only step taken is further evidence of the scandal gradually being uncovered.

The Mazars review underlines how there is no clear definition around what constitutes an ‘unexpected death’. A chilling position for learning disabled people who, all too often, are perceived to be of ‘inferior stock’ by health and social care professionals. Mazars used the Sloven policy which states that unexpected deaths are those that occur without anticipation or prediction, or where there is ‘a similarly unexpected collapse leading to or precipitating the event that lead to the death’. Sloven, as always, exemplary in the production of policies here (while their practice kicks back to the very edges of care, interest or humanity).

The problem is, if your death is perceived to be expected whenever (or wherever) it happens (including if you’d just got into a bath, in an NHS unit, with four ‘specialist’ staff members and five patients, in anticipation of a trip to a much loved bus company, aged just 18) then you ain’t got much of a chance. [And really, Somerset and Northants.. can you seriously argue that not one of those 209 deaths were unexpected? Not one…?]

What both the Mazars review and Guardian story (and the earlier Confidential Inquiry published in 2013 …) demonstrate (in addition to the arrogant, short sighted and bullying actions of some Trusts) is:

1. People labelled ‘learning disabled’ die considerably earlier than people who ain’t considered ‘learning disabled’.
2. These deaths are typically expected and are, therefore, rarely categorised as unexpected.
3. It is all too easy to label these deaths as ‘natural causes’.
4. Existing NHS ‘death’ processes are unfit for purpose because of 1-3 above
5. Recent reviews/newspaper reports and the associated responses by various Trusts to these should raise unmissable red flags to NHS England, the CQC, Monitor and the Department of Health… but we know they won’t.

The lives of certain people, like LB, simply don’t count. The extraordinary resistance to the publication of the Mazars review and post publication challenge to the Guardian story underlines both the existence of scandalous practices in the NHS and, as importantly, a refusal by those entrusted with the wellbeing of patients, to recognise what they are actually doing.

Here’s to 2016 being the year in which these practices are rootled out and stamped on. Surely.