Post-mortem stuff

Warning: upsetting content…

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A coroner concluded that 24 year old Sarah Davies died of natural causes due to unknown origin this week. She was found dead in the Tarry Hill ‘care’ ‘home‘. The pathologist originally said she died of SUDEP (sudden death through epilepsy) but changed his mind during the inquest and said her death was unexplained. He admitted he hadn’t sent samples of Sarah’s brain for further analysis as he should have done. Sarah’s family are understandably distraught to not get any answers from her inquest. [Matt O’Donoghue live-tweeted the whole hearing. It’s harrowing reading. And uncannily similar to LB’s inquest.]

When it emerged there were serious omissions on the part of the pathologist at Sarah’s inquest I was pitched straight back to the week after LB’s death. That baking, baking, long, hot summer when our lives were shoved into a black hole of insensible grief, horror, anger and incomprehension.

Charlotte, our newly appointed solicitor, working with INQUEST, advised us to make sure the pathologist followed the guidelines for patients with epilepsy. Unimaginable phone calls. A house full of people. Flowers. Tears. And terrible decisions to be made. He hadn’t. He hadn’t? They were ‘just guidelines’. I still can’t write much about this episode.

Some emails from this time …

The reason I mentioned a second post-mortem is because the current cause of Connor’s death is unascertained and it may be that a different pathologist could assist in providing further clarification, or it could be that Connor’s case is one in which the post-mortem examination itself cannot provide clear answers. I am sorry to be so blunt but I want to be sure that you can make an informed decision. (received 10.7.13)

In terms of a second autopsy, Connor has been moved to the funeral directors and we’re reluctant (though would if it would make a difference) to have a second postmortem. (sent 11.7.13)

I did say to the coroner that the guidelines are written with a view to persuading family members who may be resistant for whatever reasons to the sampling of the brain tissue and we weren’t consulted. (sent 12.7.13)

After a bit of a battle with the coroners office because they were reluctant to do anything, they’ve taken the brain tissue sample and Connor is now back at the funeral directors, thank goodness (my levels of what is ‘good’ are so low after this latest mess up). (sent 12.7.13)

[Howl].

When LB died I’d been blogging about him and we were given advice via twitter about what steps needed to be taken. I’ve not revisited the failed post-mortem thing since. I can’t imagine how Sarah’s family must feel. No answers because essential tests weren’t conducted.

Just because.

Because Sarah and LB’s (and many other) lives simply don’t count. And in death they aren’t worthy of the typical and expected scrutiny applied to others.

It’s inhumane families have to fight to get answers in these circumstances. And, if they ain’t armed with the relevant info, the space to get answers or accountability is severely compromised by (further) crap actions by professionals. We  shouldn’t be policing whether post-mortems are conducted properly. Or be consigned to a netherworld of no answers when this well documented process is cocked up by professionals on inflated salaries and no whiff of accountability.

I’ve not got a typical punchy demand some action end bit here. With a hefty swear or two.There doesn’t seem any point. I’ll just end with another email extract from that week.

I think this search for answers/campaign or whatever it is or becomes, is important. (sent 12.7.13)

31 thoughts on “Post-mortem stuff

  1. Thomas pre inquest is due again this month
    Paula had to pay for a second post mortem donated by the public
    No toxicology tests were done
    The causes included downs syndrome both times for cause of death? Why?makes you really wonder? He had no heart complaint, he was fit
    Thomas injuries, despite knowing they were the result of a burn mark following restraint ( find that so shudderingly devastating as he was getting really ill then) were put down as shingles
    It’s since been proven at safeguarding post meeting it was the restraint
    Can’t even begin to say what led to his death as not for me but his Mum to even think about disclosing that but Paula does want people to know
    More will be coming out and it completely demonstrates the whole point of Mazars report
    Frighteningly so

    • And the 3 a day LD dying each day on report two yeas ago, and, as we now know, these are tip of iceberg, as only 1% investigated.

      So it would be very unlikely, if we did not have many more Thomases we do not know about.

      Yet, all LD at 18 are removed to venture capital USA Rothschild backed care, as now owns Lifeways ie Cambian, who bought up the residential and specialist hospital where Thomas died.

      Removed from loving parents trying to cope with no support on forced/ made up safeguarding issues.

      Cambian, on taking over Lifeways, immediately cut staff wages, to below minimum, and then, had to put them up, see FT report of investment consequences.

      And, how dangerous is it, to have the same company owning both support and hospital medical treatment, and employing all medical etc. Staff with an overriding duty to make more profit, self preserve, and WITH no accountability

      The ethos of venture capital being to rip off as much as they can, and move on if investment is drying up, or going dodgy.

    • We are getting into a dangerously perfunctory, absurd, position in this country ,when if we call someone a retard, loony etc we are criminals prosecuted for hate speech,

      Yet, the state can actually label a person as severely intellectually impaired the new name for learning disabled,-slow, and render them ‘incapable’, of making any decision for themselves, under the MCA, and lock them up, and drug them for life that’s a lot worse, and discriminatory, than calling them a loony, etc.

      Also,, it appears, mental disability ie intellectual impairment is based, on very dodgy adeptive criteria, and then is being equated with mental illness, which is then equated to physical illness,

      How many times to we hear that these people are very ill,

      They are not, and then of cause, its easy to say, well they were very ill, so died of natural causes.

      The mentally disabled, which again, is an incorrect term, for an autistic with educational difficulties, and downs syndrome, such as Thomas, are not physical ill.

      This is just tripe, and people, do not die of chest infections at 20, particularly not in a hospital costing £4500 per week

      The plain truth is, that the LD are dying, in such huge numbers, because of medication, medical neglect ,and then this is covered up by saying, well they were very ill, and, they died of natural causes.

      If we allow such lies, and state such absurdities, anyone could be killed by the state in their care with impunity..

      Very suspicious about the epidemic of ‘sudden adult death’ again a cope out……….

  2. Sudden adult death syndrome is another big one now, with its own charities etc.

    ie we have insufficient information so we’ll use this old excuse as no one knows what it is.

    Yet the poor Mums like Sally Clarke Angela Canning were not allowed to see my ytube video lecture.

    There is a big shortage of Home Office Pathologists THE government I believe have been cutting down on them. No research on matter, but is the service now privatised ?

    This is the problem, how can you trust the system ?? When it is so secret and all powerful.

    I believe few full autopsies are now carried out due to costs.

    If we wanted the truth we would have independence imbibed into system ie funded by government, independently instructed post mortem by family pathologist .

    No wonder we have narrative verdicts, and all die from ‘natural causes’, if no one can find out why people have died.

    Terrifying, from an accountability point of view, and without that we have no safety, particularly in the all for profit and self preservatory care industry.

    Yet, you want to bet, if they had died on families watch, the police would prosecute, and there would be a post mortem.

  3. Pingback: Antenatal Testing for Down’s syndrome | The Diary of a Not So Ordinary Boy

  4. It is upsetting but essential that people open up about what happened after a death, was a post-mortem even requested ? did you realize you could request one ? and what if it were inconclusive ? A relative in their 80s has died suddenly and everything and anything that you would expect to happen is happening, and more. Absolutely no question when it comes to further analysis via tissue sampling, a temporary death certificate is issued after an inconclusive post-mortem and further investigation is ongoing. Not one professional has referred to an advanced age and no stone is being left unturned. Normal protocols and normal procedures that apply to everyone. The family have not had to request scrutiny. How is it possible that this simply does not happen in every instance of sudden/unexpected death.

    • I don’t know, Nic, but we sent letters in triplicate – actually, in sextuplicate, as each was double-sent, in hardcopy as well as by fax or email – to the coroner, coroner’s officer and pathologist, asking for specific histopathological examinations to be done for my father, to seek evidence of neuroborreliosis, and were comprehensively ignored. And when we asked about a private PM we, too, were told it wouldn’t look for or find anything the coroner hadn’t already sought. Not true, and utterly devastating.

  5. Why are our children second class citizens?………why do they not matter?
    …..because the people in charge were brought up in the era of institutionalization,,,,,times will change and we need to make them change. Martin Luther King initiated change for race in USA. We must initiate change for people with Learning Difficulties. What we do will change society for the better… we must believe… we must fight….we must achieve change. It is up to us to do this.

    • The first change, the only important one, is to start saying very clearly that these people are not so unworthy of life that they can be killed before birth by state sponsored doctors. After that is put right, everything else will follow.

      • You are right, this is an attitude to humans to use as commodities.

        But, only because profit can be made by this.

        This is the nub. Remove the incentive of profit, and it will not be done.

        The reason why, we now have a push for tests on those in the womb, is because, we now have privatised medicine, fed into by drugs companies, equipment etc.

        So all are now not treating, but seeing ways of making a quick buck.

        Tests make bucks for those doing and devising them, and then those aborting all private profit now, or in the future, and a cabal monopoly, paid by the public funds of us via NHS.

        A huge scandal, and cabal, and not, in the money provider public’s best interests, who are manipulated by government, press, and media, into these profitable services, and have no rights, or even choice.

      • I doubt very much that that will put everything right. Sure, the devaluing of a disabled life needs to be stopped and women need to be given much more accurate information, but that is a minefield unlikely to result in universal agreement. People have to decide for themselves which battles they can, and will fight.

    • This is a government policy, that started, as a research seed back in 2001, as they usually do, with projections of older carers of disabled children, and, what would happen, when they die, to the creation of the myth of independent living.

      Why ? Because the government knew, these disabled, were worth a fortune, from health .welfare and education support, that could be claimed under the Chronically sick and Disabled Act 1970, and benefits now over 200,000 per annum.

      So now, as many disabled as possible, must be made, or found, hence the new adeptive criteria for diagnosis of a learning disability now intellectual impairment and the epidemic of autism.

      The Court of Protection, was then created by the Mental Capacity Act 2005, and via social services and MASH, the disabled, harvested.

      ‘Experts’ illegally declare, they cannot make any decision for life, and therefore, if they have, given a power of attorney to their relatives/parents, this will be declared invalid, as, they were always incapable , allowing, their for profit venture capital care, residential and now private medical providers, to make every decision for them for life, and, be assured, on average £3,500, and, far more for life, by merely shutting the disabled up with drugs, and locking them up.

      Only oversight of their tortured abused existence, is, the tick box of the adult services manager, whose employer commissioned the service, there can be no complaints or spy cameras..

      All feed into this system, which is now an efficient machine, and, even if the service results in death, nothing is done, and, it is a huge multibillion pound growth industry, that is why USA and Canadian venture capital is buying into it..
      .

  6. I don;t understand this verdict and it scares me. If an otherwise able-bodied person died in hospital of epilepsy, would it get chalked up so casually to “natural causes”?

    De-mystifying and de-stgmatising epilepsy is a bit like the obsession with “natural” birth. Has its advantages but the built in dangers being overlooked can be lethal.

    My daughter had a nasty version of epilepsy that was uncontrollable for 20 years. I do sometimes feel that I kept her alive through sheer will power, and I was, and still am, terrified of casual approaches to the threats. Don;t think she would have lasted five minutes in an ATU. Very not OK as far as I am concerned. Any point in finding statistics on other cases?

  7. Aside from my efforts with Sloven in my own matter, I am still in dispute with a care home, a Council and a not-for-profit healthcare organisation about the death of my Mum, aged 95, in 2014. I identified a safeguarding issues: the Council and healthcare organisation refused to disclose a copy of the subsequent safeguarding report but Wiltshire Police safeguarding section did so without any trouble – surprise, surprise, it contained a statement that was materially dishonest.

    TIP: if involved, the police are more willing to disclose evidence to Executors and/or to those who acted for the deceased regularly whilst still alive – such as the holder of an Enduring Power of Attorney or a cheque signatory.

    I may start a blog about that in future – but over a year after Mum’s death, the investigation is still ongoing! Partly (but not principally) my fault because of dealing with my own matter with Sloven.

  8. I am facing my brother’s inquest in two weeks’ time. In May last year he broke his neck while in care. He was 66 years old and had severe learning difficulties. We still don’t know how he broke his neck. The Health Board is holding a “review” but is refusing to obtain the opinion of a spinal injury specialist. He was in hospital for five months and suffered four bouts of pneumonia because of his condition. The post-mortem said that he died of natural causes. I disputed this and the coroner is holding an inquest. Any advice would be appreciated.

    • Sorry Moelwen, this sounds barbaric. I can only advise you get legal representation and possibly ask for a delay for a few weeks to allow the solicitor to carefully go through all your brother’s records. I can’t see how a broken neck can be natural causes. If you go ahead, I hope the coroner is sensible and dismisses the suggestion.
      Other people may have more helpful advice for you.
      Good luck, Sara

      • It seems to stand for “Naturally, we can’t be bothered taking this seriously, and naturally, no one can make us so, naturally, we will get away with it. So stop rocking the boat and go away.”

      • I hope that in the pre-inquest hearing the coroner will agree with me on the list of witnesses that I want and they will have to answer the questions that I have already asked but that nobody has yet answered.

    • I would insist on an Art 2 Human Rights Act, at the inquest ,as you have a right to one, as effectively he was in the NHS custody, but you’ll have a fight for one.

      You can appeal to the High Court, but again, you’ll have to find out procedure from court and net, and it won’t be easy, and expensive, unless you represent yourself, which unless you are rich, I recommend you try to.

      If all deaths in state care, particularly, as it is now and in the future to be private and therefore purely for profit ,are effectively unaccountable, because of the state cabal and lack of due process, we really are at their mercy, and in a terrible position.

    • It may be that you don’t have time to get legal help, and that the coroner may accept that a death from the COMPLICATIONS of a broken neck was “natural” within the narrow limits of this “Don’t let us look too deeply” world. You DO have a right to be heard, and you should, perhaps, pursue whoever was responsible for his lack of care as a separate issue, with no time limit. Isolated, it is really tough, but there are others in similar positions who will cheer you on.

      • But, if we allow all ‘die of natural causes’ in care to be allowed, then what is the incentive for decent care for which the care provider is paid, handsomely if mental care.

        To say nothing of the perversion of due process in the coroners.

        There is little point in pursuing a claim for negligence, as a lawyer would have to be found and paid, or do it yourself in county court, he would not do it,on no win no fee, as too big a risk, and you bear the risk of losing, as it is only on the balance of probabilities, and being made bankrupt paying all their expensive lawyers and experts, and you would have to get and pay experts, and beat their experts, and it would be impossible to find out what actually happened.

        Very difficult to hold the NHS, or social care liable, that is why they continue to do what they like.

  9. No point at all in pursuing a negligence claim for a death, as it boils down to “loss of earnings and inconvenience”, not the value of a precious life. Pursuing appropriate action against those who caused the death is worth doing, but professionals are heavily sympathetic to the interests of other professionals, so yeah, it is difficult to impossible. Not doing it is unthinkable. They look at each other, and think: There but for the grace of God….” They do not look at us and think that. People resign when their position is untenable, not when it is unethical.

    Water wears away stone, and the scandals are piling up. The story the other day that when you can’t get a job anywhere else, mental health will take you is very depressing. With luck, Katrina Percy may not be winning any prizes or making any job applications for a while. Small comfort, and a long way to go. But it has been very very easy to get away with it up to now. Social Media and swopping stories might, eventually, tilt the balance a bit. Even Daily Mail readers are getting a bit disgusted. We need to hammer that good care is expensive, bad care might just be shown to be even more expensive. Death, of course, is cheap.

    The power of the MCA and the Court of Protection will take a while, But one or two of the judges are beginning to see the light. Their power IS terrifying. We need to know the law and use the law – and it ain’t easy. We need to support one another, because no one else will.

    • agree no point in embroilment in ‘claims ‘. Molewen well done for finding your voice to dispute the post-mortem findings , so easy to nod agreement in grief, the pre-inquest and review are already upon you and at least you have your questions prepared. As impartial and distressingly inadequate as it is I would pursue answers via the inquest and review. If those investigations generate Medical regulatory/ Government Ombudsman investigations, then hang in there like a terrier with those. There will still be an immense personal cost to you and yours but my own view is that legal representation is just not a reality for most people and financial difficulties are the last thing you need. Good luck to you with the coroner, keep questioning the how and the why.

      • Grayling did set up an exceptional hardship fund that could be used for lawyer for inquest afraid do not know how you would access and as all exceptional how much has been paid out or chances of success.

      • I was in touch with lawyers while my brother was alive but they lost interest when he died, for the reasons stated above. I have my questions and list of witnesses prepared.

        i have also written to the Minister of Health at the Welsh Government drawing attention to the PHSO and the Mazar report in England, saying that we need to look into how health boards investigate in Wales. I believe that the person reviewing my brother’s case is a community nurse who also has a day job. I would expect trained, professional, independent investigators to carry out such work.

        We’ll see how things go. Thank you all for your support and advice.

      • Glad you have managed to be so proactive under the circumstances, which must leave you very frustrated and disillusioned with the system.

        You are right to believe, that the investigation by an ad hoc, paid to do such investigations by the person, he/she is investigating, is going to be a forgone conclusion, and a tick box self preservatory exercise.

        The investigators conflict of interests appears to make the conclusion inevitable.

        I’ve experienced such an investigations, some years ago, when I complained to the Healthcare Commission.

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