We went on holiday last week. Starting from the battered position of getting the ‘updated’ version of the OCC ree (I refuse to call this a report as it bears no resemblance to anything I’d call a report) at 5pm, the day before we left. The issue of records cropped up again when we were away. Relating to whether LB bit his tongue or his lip in the unit.
This is a nonsensical question that underlines the importance of families documenting interactions with health and social care professionals meticulously. And even then, how their records are not really records.
In a complete panic, back in May 2013, I emailed the STATT manager to say that LB had had a seizure and accidentally typed lip instead of tongue. This typo has become part of the official record and has seeped into both the original Verita report (extract below) and the documents for the coroner.
It was a typo. One I realised and corrected the following morning, first thing, in a follow up email to the manager who’d replied to say he had contacted the consultant.
This email didn’t make it to the ‘official record’.
The lip/tongue question remains an issue. A confounder in getting accountability for LB’s death. [Yes, he died. He drowned. You fuckers].
This raises so many questions about what families can do to make sure their records, their version of events, are treated with respect and fully engaged with. To avoid being dismissed, misrepresented or ignored.
I typed lip instead of tongue that evening because I was so intensely distressed by the thought LB had an unwitnessed (unwitnessed??) seizure in that place. It was a simple typo.
Back from holiday. Sitting at the computer on a sunny Sunday afternoon to gather more evidence that fell outside the official Sloven/OCC record, I can’t help asking;
Really? Are you really making us go through these hoops?
Why?
mydaftlife 
My own experience of these people…..the longer the delay usually means you are right and they are wrong. I think they work on the hope that it will break your spirit the longer its allowed to go on. Lets face it, that wouldn’t be hard considering the circumstances, and it makes me wonder how many times this tactic HAS worked with others within the NHS/LA`s. I liken it to a slow sadistic torture which just keeps you on the edge of insanity. All I can say is hold on to what you believe you know to be right throughout all of this based on your knowledge and legal advice given.
Records, are for the states own purposes.
So will only appear, as they want them to, for their own purposes, and can be retrospectively changed.
The public has no control over them, and often do not know they exist, and even when recommendations are made, the self preservatory institutions, run by insurance companies, and risk assessment, take no notice.
Why should they, they are not accountable, under the present systems.
CQC, OFTSTED, does not check the accuracy of their records.
My daughter’s £177,000 per annum, for a third of the year, NAS school, had GP records, when my daughter, had never been taken to the GP, and, we know no GP did, or would attend her school for an examination.
I assume, the consultation was over the phone, but it does not appear that way.
Similarly, there were dental appointments, although with good teeth by nature, they managed to miss a completely rotten molar and wisdom teeth, which had to be removed on her return home.
Recommendations, were made by the Safeguarding Authority, after my daughter’s 48 bruise restraint , all blamed on self harm, that, the incident/restraint book, not be kept separate, something, criticised already in an OFSTED report,and we, be provided with copies of it.
Neither happened.
Not only are these matters, which mean no accountability of service provision, and a real danger of neglect and abuse, but these records, are referred to by coroners, protection, care courts, OFTSTED, and CQC.
I attended a meeting before Thomas died. Paula clearly told people at that super high powered meeting how desperately concerned she was. We took notes. The minutes are different. Very different. So different in exactly the same way. Cannot say any more for reasons you understand
Jayne, that is sickening .
Karma will do its job .
the erroneous records were something I did not anticipate in my complaint, I was focused on non actions leading to my daughters death over a specific period. The records damned the complaint from day one. I am troubled that the record is lip and not tongue. Lip injury can be attributed to hand biting/head banging or a persons own closed fist beginning smashing against their teeth. Unexplained tongue injury would more likely mean potential seizure activity be considered a possibility. If epilepsy can be pushed out of focus it helps the Trust enormously. Brace for the final insult which is actions and instructions attributed to Connor that you cannot refute. I believe that it is the intention to seek misadventure.
I apologize for the personal nature of the question but have you challenged that Connor stated he had bitten his tongue in anger ? was it a behavior that is witnessed or recorded previously ? was it characteristic for him to present an injury non verbally and then give an explanation when questioned about it ? I have no doubt you/yours and the legal team have thought of everything .
They can make black white by sophistry, if working in a cabal, which they are.
And this is what is happening throughout the various courts/institutions.
That is why we all live in fear, receive no public service, and are impotent, to do anything about anything..
If Connor’s epilepsy, did not need the very closest of attention, why were they paying £3,500 per week for that attention, and why was supervision 3 to 4 ?
This hair splitting per se is sophistry, subversion of the law and process and evidence of corruption, and non independence.
nic I reckon you are right death by misadventure may well be the out for them. Biting one’s tongue is pretty standard for a severe tonic clonic seizure. In the old days one was supposed to insert something in the mouth (that was in the dark ages 1950). to prevent biting the tongue. I knew of this at that time. It was then decided that this would cause more injury than actually biting the tongue. Sara is this a stupid question, but were there any protocols in place for epilepsy. When Martin was with Ridgway 2007 to 2008, they had no idea that such protocols existed. Martin had always carried with him an emergency pack with protocols for all his various types of seizures, emergency meds, and at least one days supply of standard meds, together with daily dosage instructions. This disappeared before he went to the unit, and hasn’t existed since.
Another death at Slade site.
Do you have any details?
Died in Jr alone infection I believe.
With the deepest respect feduples – why? You (if sara is correct that you know slade hse) know that there is no need to state this and will be fully aware that there were underlying health conditions that were life limiting. People are grieving. This situation is nothing like the grief and horror Sara and her family have had to experience and continue to have fight.
If the death were, from underlying health conditions, they this is equally culpable, as these should have been treated, particularly for the £3,500 per week to look after this patient.
How, without a full independent inquest/enquiry, can it be ascertained, how this person died.
And, in view of the manner in which Connor’s death has been investigated, this will be difficult to get.
Thomas Rawnsley’s death, in a private ATU, paid for by the NHS, is also being blamed on underlying health conditions, ie a chest infection, when he was 20 and died of a heart attack, and was being pumped full of antipsychotic drugs, which are black boxed in the elderly, because of their affect on the heart.
Stephanie Bincliffe died at 25 weighing 25 stone of heart failure, yet her enforced medication of anti psychs not mentioned, nor weight gain being a side effect of that medication.
If you look at the 4 deaths in 8 months in St Andrews, you’ll see similar outcomes from investigations.
I know for a fact that it was an infection that he caught from being in the secure unit. He died in pain and alone. No one we allowed to be there at the end. It was barbaric.
Feduples, i dont understand either your information, or your motive.
An infection caught ‘in’ a unit is different from an in infection caused ‘by’ a unit.
You cannot possibly know if this person died in pain and alone. You were not there.
And your comments may cause immense distress to those people who did know him.
And nothing contributes further to the conversations around Connor.
This is substantially inappropriate for many different reasons.
Most people, do not die in a hospital of an infection, unless very old, or physically sick.
These mentally disordered/disabled are not.
If, non mental patient die, of an infection picked up in a hospital, then there is an investigation, and, consideration even of manslaughter, and an action of negligence.
The medical needs of the autistic, are not looked after adequately, in their residential care, either in supported living, mental hospitals or ATUs or Assessment Units.
All they, usually receive, is a perfunctory, routine, superficial, examination from a nurse, and, if they appear to resist in any way, this is not given, and tick boxed refusal.
Yet, a battery of enforced medication, of any type, or, amount thought necessary, is allowed.
Lack of any, let alone, adequate medical care, appears, the hallmark of the autistic, throughout the system.
From GP, hospital to ATU and Assessment Units.
And, it is not through lack of funds, as more money, is spent on
Autism, than heart disease and cancer.
On average 3,500- 4,000, and more, in residential placements, and ATU.
It is about accountability for their ‘care’.
There isn’t any.
Actually Em.
I did know him and was with him the day he died. Why should these people be allowed to get away with it?
And,, be paid so much for doing so.