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:
- People labelled ‘learning disabled’ die considerably earlier than people who ain’t considered ‘learning disabled’.
- These deaths are typically expected and are, therefore, rarely categorised as unexpected.
- It is all too easy to label these deaths as ‘natural causes’.
- Existing NHS ‘death’ processes are unfit for purpose because of 1-3 above
- 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.
And someone gets fired?
There has to be a full investigation across all NHS Trusts using the same methodology so they and we can be sure they are making sure our most vulnerable people in hospital are being looked after with dedicated and expert care. For the cost paid per individual the treatment should be of the highest level and provide a sanctuary for people severely in pain as a consequence of their mental health. They should be cared for, treated and returned home better. You go to hospital to get better not to die. If you are going to die and it’s expected then it’s end of life care and that is a different matter and should be again the best of care for anyone going through that. No difference.
Secrecy around any of this will not fix any systems that are failing. Thathappened at North Staffs.
What is shocking, that when a learning disabled person goes to hospital and has epilepsy as well ,it takes 48 hours at least to organise the persons medicines and Realise, that they are so crucially important to administer as prescribed. In that time when nobody is AWARE! of this particular responsibility the patient suffers horrendous fits due to not being medicated as prescribed. The patient can and would die (depending on severity of Epilepsy and dependence on drugs) This is an extra worry to parents/carers on top of other problems and reasons the person is in hospital in the first place.
Biggest, most important, not asked question, the deliberately ignored elephant is,
WHY ARE THEY ARE DYING?.
We have little information, with the creation of narrative verdicts, and catch all, ‘natural causes’.
Let alone what is an ‘expected death’, and why it is, expected.
‘LEARNING DISABLED’, whatever that term means, check how subjective is the definition.
The criteria, particularly for the autistic, is highly discriminatory, and, per se perfunctory, and, often does not consider inappropriate treatment, education. physical/mental conditions.
BUT, those dying were not initially ie before ‘treatment’, physically ill.
Remember 74% of autistics, are still on anti psychotic medication, or other, to manage behaviour, unchecked, and enforced.
Pharma, is our third largest industry. Might this be part of the reason, and most of the silence?
My brother was born with Downs Syndrome in 1956. The medical profession did not think to even inform my parents of this until he was 9 months old and that was only because they took him to hospital for a check up on chilblains and the doctor told my mum that ‘Mongols regularly suffer from this condition’ ( 😦 ). My mum had no idea what that meant and it was explained to her in the most negative terms…he will never do this, or that, or this… and will not survive his childhood because ‘these children just don’t’. They offered to put him in an institution then and there, which my mum refused (thank goodness!). He did survive but they were then told he would not survive his teens, then his twenties…on and on the attitude of negativity continued from the medical profession whilst the rest of the population was thankfully altering its attitudes in huge leaps. Why have the medical profession never got over their ancient attitude problem? My brother sadly died aged 53 but it was after an illness and was what would be called an ‘expected’ death. He only led a busy, happy, active life because my parents were strong enough to ignore medical advice. I agree that 2016 needs to be the year of change. These reports must not be allowed to just disappear.
Now parents, are not being given an option, but, to put their Downs/autistic/LD children in institutions.
They are forced by the MCA, or section under MHA, or both.
See Thomas Rawnsley’s appalling treatment.
And, the institutions, have been recently built, by private equity venture capital from USA, and laudably termed supported/independent living.
Independence without choice, or rights.
And, the public money, paid for the vulnerable’s care, is huge under the Chronically Sick and Disable Act 1970, based on the most individual and specialist care ie on average £3,500- 4000 per week.
Yet, they receive the cheapest care, and minimum, enabled by drug coshes.
And, even their deaths need not now, be explained, or even investigated.
This is allowing ‘attitudes’, and, forming policy, to make profit, avoid care, and deracinate parents.
Doesn’t say much for the NHS as a learning organisation, either, if it is adopting the position that there is nothing to be gained from looking at ‘expected’ deaths and the path taken by a person on the way to their end.
It’s not just about whether a person has his or her death correctly classified according to agreed criteria as ‘expected’ or ‘unexpected’ and is therefore treated appropriately post-mortem; it’s also about reflecting on whether that person was given proper treatment and care while they were dying and when they were alive, and whether an ‘expected’ death was also an avoidable or preventable one.
Yes Jayne you go to hospital to get better , not to die.
You have hit the nail on the head!
That’s everybody’s expectation.
So it should be for people with some extra needs, after all it was medical knowledge and intervention that got you thus far from birth! We all benefit from care pathways when in different circumstances. So why not for the labelled ” learning disabled”
A hospital trust has a policy system to employ medical staff to apply their expertise to prolong life.
( don’t they? ) .
My son was admitted to our local acute hospital not long ago. When in A & E the admitting doctor said when questioned … oh yes we admit to treat not to observe! ( our son was in non convulsive status) .
Constantly we heard the doctors then say to us. …..
“This is outside of our area of expertise! ( no epilepsy training) .
A scary place to be for all .
All worked out well but it could have been so different.
It’s time for me to speak up with our MP and highlight the Mazars report and ask the questions.
Anyone with epilepsy must have on them at all times an emergency pack which contains all protocols for all types of seizures which they suffer. It must also contain emergency meds., and at least 2 days AEDs – I always made sure it was a week. They must also have easily found identification that they have epilepsy plus an app on their mobile phone. My son has Lennox Gastaut syndrome epilepsy and in the last 10 years he has never had this pack with him. He is in a residential care home in Wales so I am not in charge. He was actually illegally sectioned in 2005 because no-one knew anything about this emergency pack. The judge in the Court of Protection actually asked me what an emergency pack was!
Says it all Shirley, and, why so many are dying on the state’s watch.
We, can no longer keep them safe.
Once the state has them on their radar, they are processed through a myriad of meaningless paper, meetings, and court hearings.
Earning a fortune for their ‘overseers’.
Then they are abandoned, alone at the mercy of any unchecked ‘care’ provision.
The law, their ‘best interests’, them, and their family, ignored for life.
And, no one need know, or be concerned, as all is in secret, and, they are unaccountable.
Even for their death.
Yep, this is what we are trying to challenge. (Probably pointlessly).
I think EU and UN best bet.
And, all MPs via parents affected, on specific issue and deaths.
And deaths in private provision, must be known, as they hide behind this ie ‘it wasn’t NHS it was private’, even though we commissioned and paid for it
And, as this private provision, is what their aim is, this must be known, and safeguarded.
It is very late in the day, but something has to be done.
That is why our children are in this mess, and dead, and dying.
Simply, because this has been allowed to happen. .
Reblogged this on danutag57.
EU and UN already tried-useless.
But how have they been ‘tried’ ?
The recent moves on forced adoptions, are likely to be due to the Petitions Committee exposure.
Without actually admitting it, (above all things these NHS high ranking bods must not appear to lose face) all the Trusts in the NHS are going to look again at their policies relating to people with LD and epilepsy. Unfortunately, the LA’s do not seem to be following the same agenda. LA.s are cutting night staff from 2 to 1 in their supported living homes. Imagine what could happen if more than one person needs attention in the middle of the night. What if someone has a seizure in the night? Who goes with them to hospital?
If, God forbid, anyone should be harmed by these badly thought out, cost cutting policies I definately do not want to hear a ‘spokesperson’ from the LA spouting the same old worn out excuses that ‘ the safety of people with learning disabilities are their first priority’ or that ‘lessons willl be learned’. The lesson has been taught over and over again by grieving parents and carers and it is about time the pupils (NHS, local government and Parliament) start taking their homework seriously.
My cousin’s son was admitted to Blackburn hospital aged 26 with a chest infection and he was on the ‘fast track’ ward, ready to be discharged, as it was not considered to be life threatening. He had mild learning disabilities and was born 3 months early. He died on the second night and his parents had to wait months for any sort of explanation and were brushed off many times. They found it incredibly distressing that they were offered no formal discussion or reasons. They had to push for an independent review.
You’re right, Sara, where is the trust ?