It’s late. Probably too late to write this. Rich has gone to bed. After an evening of recounting, revisiting and rehashing the same stuff we’ve now been talking/howling/raging and weeping about for eight months. We talk at home, at bus stops, in the supermarket. The most extreme stuff imaginable. In London yesterday, Rich said to someone in a cafe who asked what he was doing that day ‘You wouldn’t believe me if I told you’.
Extreme spaces and extreme non engagement.
LB, a fit and healthy, quirky, remarkable, self assured and beyond loved 18 year old entered an NHS hospital nearly a year ago now and died. Through proven neglect. This isn’t ‘news’. This isn’t well known (well outside of a grassroots campaign, #justiceforLB, that deserves a spotlight of its own). We’ve endured brutalisation through the actions of the “Trust” (Sloven) and, as the meeting today with NHS England staff demonstrated, a broader carelessness, disregard and disrespect. A simply ‘doesn’t matter’ attitude.
If LB hadn’t been learning disabled, his death would have provoked instantaneous outrage and engagement. We’ve lost count of how many ‘atrocity stories’ since LB died that have been headline news. We’ve fought like fucking billy-o to get accountability. We managed to get an independent investigation into his death commissioned and, with a fight, published. A report that categorically states that LB should not have died.
LB should not have drowned in a bath in a hospital. In a unit with four ‘specialist’ staff and five patients. He was diagnosed with epilepsy. He had documented increasing seizure activity as a consequence of the medication change imposed by the clinician responsible for him. It was recorded that he was sensitive to medication change. We told them he was having seizures when he was in there. Knowledge they chose to dispute.
Why would you dispute seizure activity in someone diagnosed with epilepsy, sensitive to medication change, when their family flag up seizure activity? Where in the the fucking curriculum/on the job experience does stamping out any sniff of a known risk feature?
And yet, the CEO of this shoddy, beyond unfit for purpose outfit, was interviewed on local radio a week or so ago, bleating about the ‘false positives’ that led to another CQC inspection fail. Those pesky selective false positives that led her, and her board, to assume they were providing adequate (we ain’t even reaching for good here) care? Sheesh. What is a Chief Exec and her board to do in the face of such insouciant staff actions?
Yowsers. This is horrendous. At the very least the relevant bodies must have collectively swooped in and sorted things out. A young man drowning in the bath in a specialist unit? Blimey. At least they must have supported the family in every way possible. The various bodies must have chucked in everything possible to ease the intense pain this family have experienced.
Yeah.
…
mydaftlife 
Oh Sara. This is how the inertia of systems tends to annihilate even those filled with infinite energies of grief and heartbreak, trapping them in a Möbius loop of others’ wilful stupidity until they are ground down to a powder and their drive finally dissipates into the winds of time.
It may seem like it, but you won’t have to educate each individual in the 60 million yourself, one by one. There are enough of us, now, to keep kicking at the pebbles that will start the landslide. Promise.
“To start a landslide” dare I say should have started years ago! As much quoted Edmund Burke says “All it takes for evil to prosper is for good people to stand by and do nothing” Thank you Sara and family….you are good people who are doing something! Since the tragic death of my son 8 years ago, grief is still demanding its hearing…..take care and look after yourself. Its too easy to leave all to chance (as we know that’s the option often taken by State!) I promise too that you have lots of support out here and there will be Justice for LB.
Thank you both. Yep, the reach of social media now makes things different (which didn’t help you, Dee, eight years ago).. Here’s to justice for all the dudes.
In view of The house of lords report on the Mental Capacity Act yesterday could you not get up a huge campaign using this and criminal negligence under the Act?
Yes, I think we need to focus on the mental capacity stuff more, Shirley, and agree about using the act for possible further action. The report is good timing in this respect. Thank you. (And thank you..)
Intellectually disabled people seem to be the lowest common denominator on the hierarchy of cognitive capacity, and indeed humanity. Not only are they unable to speak for themselves in so many ways we privilege intellectual capacity and manage to cast those who have a learning disability on the rubbish tip. The mothers/fathers/carers seem to be deemed as WHAT? a pain and in inconvenience in the arse of those who want to over up atrocities that that occur in our so called care system. they (and we, if we do nothing) have too much blood on their hands.
Chrissie, my lovely son was a student who studied classics, a gifted musician and an ethical socially conscious man! He was tragically failed & died in 2005. By way of explanation, in 2002 I was misdiagnosed and almost died, the effect this had on my son was to put his mental health into a tailspin. He started self harming (Twice) and was eventually placed under Section 2 “for his own safety”. Like LB my son was “found” (how do you find someone under obs?)fatally wounded in a bath on a ward in an NHS Hospital. By placing him under Section the Trust took responsibility for his life, they had a Duty of Care and my son was failed! There was no investigation “we were only asked to consider one…we did and its a no” and Trust sent my sons possessions back in a bin liner marked “NHS Household Waste” …..on any level is this acceptable?
By not investigating until I had almost worn myself out seeking one,, the Strategic Health Authority NHS London (who also gave the errant CEO a job) ‘granted’ one, 6 YEARS later! The system whitewashed the truth & didnt deal with all flaws. It let my son and my family down! But its also become my driver!
The (so-called appeals for NHS Complaints )the Parliamentary Health Service Ombudsman (PHSO) didnt investigate as “there were not enough notes” SORRY but WHY?!!!! and when I agreed to take part in Baroness Fritchie’s Complaints Review on Avoidable Deaths. the PHSO placed restrictions on what I could discuss! So how are “lessons” ever learnt? Now hearing that “no ‘historic cases will be considered”….again how are dots joined if left to chance?
My son used to say “Mum, some days you’re the pigeon and some days you’re the statue….its just life!”
Happy flying!
Dee, people do what they can, with the resources that they have available at the time. it’s a cliché, I admit, but still no less true.
I hear and understand that you wish that you had had different resources or could have deployed them differently. I wish it too, so that you could be in a more peaceful place now. But I for one am grateful that you are still here, still kicking at the pebbles that are most accessible to you. Whatever you do is valuable and valued. I hope you feel that Chrissie would have agreed.
And I hope that one day you will be able to say with a smidge of pride, “This is what I accomplished for Chrissie. And this is what I accomplished for LB.”
Yep. Completely agree. x
Oops. Sorry, I mixed up the thread organisation. Chrissie, I completely agree with you. Dee. No words. Other than to echo Kay’s. I hope this crapshite system (which is people at the end of the day, no matter how much they try to hide behind processes) grows a pair, gives your son (and your family) the respect they deserve and does a thorough investigation. Missing or unwritten notes should form part of the investigation. Not stop it happening. The various authorities/bodies need to step up. Otherwise all this newfangled candour talk is completely hollow.
I’ve worked in LD services for 23 years. I can’t claim to be the best nurse ever, or the most knowledgeable, or the most skilled, competent or hard-working. I’ve worked in respite and not sent all the clothes home. I’ve forgotten to write up notes. I’ve meant to phone someone and forgotten. But not kept a vulnerable person safe? Never. Not ensured someone with epilepsy was safe in a bath? Never. That’s just the basics; if you can’t do that, get your arse out of care work.
Well said.
Facing insitutional indifference and thoughtless incompetence is hugely draining. For a time anger fuels you, but even when it is such righteous anger there is an ever present danger of burning out.
You need breaks from this Kafka-like environment to get restored. Give yourself some little times off. Be with people who care about you, who want you to come through & not for any reason other than that they value you for yourself.
You are not letting LB down by allowing yourself these times. You need them to stay the person he loved and would want you to be.
Establish windows in the day(and especially the night) when you stay off-line!!!
SPOT ON! As they say on airlines during safety talks “Put the oxygen mask on yourself first because if you don’t you will not be able to help anyone else!”
Remember LB and the good times……To see the stars at their brightest the sky needs to be dark!
xxx
Thanks for response Kay and I fully accept lack of resources is restricting some care. My concerns are when dreadful decisions are made. Thats not a resources thing, its a personal decision thing. I accept mistakes will be made but as Ajay1965 so succinctly says “! Not ensured someone with epilepsy was safe in the bath” NEVER I agree thats just the basics! Just as sending personal possessions back to family in a bin liner marked “NHS Household Waste” ….its the very basics I am questioning! I’m sure Chrissie will know exactly where I am coming from.
Oh Dee, I didn’t mean the resources available to the people who failed to give your son and Sara’s proper care! I don’t for one millisecond think that any shortfall in service resources excuses a lack of care. I’m so, so sorry not to have been clearer, and I apologise for writing something ambiguous that has obviously pained you.
I meant the resources available to you to pursue truth and justice for Chrissie. It sounded like you wished you had somehow been able to do more to push investigations after his death, but it looked to me as if you’d done everything you possibly could, and then some. That you were let down, you didn’t let Chrissie down, you did the best for him that you could, with the knowledge, time and energy that you had.
Sorry again for being being a clumsy fool.
Having ‘burnt out’ from fighting the previous government a few years ago, I can only imagine a small fraction of how you must be feeling. It is so hard some days to find the strength not to give up and take the path of least resistance, especially when butting heads with people who can go home at the end of the day and put the job on a shelf, or move on to another position, and who really just don’t give a shit. But your astonishing efforts, during a time of intense grief, are not in vain. LB’s story and the treatment meted out to you since his death is so horrific that it is impacting people, and that will ripple out and make a difference, it absolutely has to.
Thank you.
As I wrote elsewhere a while back: Psychopaths are all around us. According to the man who arguably knows them best, Dr Robert Hare – http://www.hare.org/ – approximately 1 in 100 people are psychopaths. It varies by geography. But they are estimated to be responsible for over half of all reported crimes. Psychopaths are mothers, fathers, sons and daughters. They are NOT all criminals, or noticeably violent. They are definitely not all obvious. They come in all sizes, intelligences and flavours. Just like real humans. Psychopaths have one series of traits in common. They feel no love, empathy, guilt or conscience. They do not feel fear as humans do and therefore do not fear the consequences of their actions. And they are liars.
They are often the answer to the question “Why do people do evil things?” Because they want to. Not because they have been abused or hurt (necessarily). Because it satisfies them.
Because they like it.
Psychopaths are delighted when people choose to believe they don’t exist. They are gladdened if you think you are too smart to be tricked by them. Even Psychiatrists can be fooled by psychopaths. People – often – marry them. They are doctors, teachers, nurses, unemployed – but they drift towards jobs where they have power and can cause harm.
That nurse/police officer/teacher who made your life a nightmare when you went to them for help? Who undermined you, lied about you? Who seemed to delight in tormenting you? It is possible, yes.
Sometimes bad things happen to people in care because the people caring for them enjoy hurting them. I am so sorry this happened.
That sounds very true. But what about the other people who see the work of people with apparently no empathy, and don’t step in? That seems to have been far more the issue in these cases of huge institutionalised neglect.
Sigh. I think there are a few ‘bad’ people but agree with Mrsmooseface (makes me smile) that the questions should be about a lack of question/challenge/critique of obviously crap practice by anyone involved.. the responsible clinician (don’t get me started), the cleaner, the receptionist, the nurse, the Charge nurse, practice manager, visiting social care staff, commissioners (oh, they don’t go near.. ) etc, etc. Surely they must “see” the shite?