I’m on leave this week. Time to try and regain some home life and ‘order’. Sigh. Today I was home alone. A rare happening. I set too, in between sitting around doing crap all, sorting through stuff. Sifting. Our ‘filing basket/pile’ had bills/statements dating backing to January 2013. The land that time forget.
LB’s chest in our bedroom distracted me. It does when I’m alone. I avoided it. I remember the last time I opened it. And cry-howled in a horrible, empty way. I can’t fucking look in it. At the stuff of love, life, simplicity, richness and depth. Trashed repeatedly by the (non) response of Sloven, Oxfordshire County Council and the wider gang of NHS England, CQC, Monitor (or NHS Improvement ‘my arse’) and Jeremy Hunt.
I finished reading the latest Sloven board papers.
This is always an exercise in incredulity, rage and despair. And time. Typically over 200 pages with gratuitous gibberish/nonsense.
Tucked away on p96 (41.4), in the CEO report, was this gem:
Alleged ‘Trust failings’. Despite everything. The CEO continues to deny evidenced and clearly identified failings. Her arrogance is extraordinary and with it will come no ‘learning’ or improvement. Despite the Comms team developing positive news.
The day was punctuated with various and unexpected Sloven activity and developments. The Sloven problem ain’t going away despite their ‘hunker down, deny and ignore’ approach to the carnage they cause. When you’re as shite as they are, there will always be shite ahead. And there is. Something Jezza, Monitor, NHS England and the CQC don’t seem to grasp.
Alleged ‘Trust failings’? I hope the new Improvement Director has a foray through their board papers. To get an insight into an organisation led by a combination of spin, jargon, arrogance, delusion and stupidity. It really ain’t rocket science what the problem is here.
I watched a programme last night about two sons of Nazi commanders talking about their fathers crimes. One accepted the fact that his father did not do enough to stop the atrocities, the other one was in denial. Blaming the fact that his father was following orders, even though he was in fact a commander himself and that he could not/would not stop the killings of the jewish people in the ghettos. The interviewer said that these german commanders lacked the courage of taking individual responsibilty for their actions. Just like the army of commanders who were killing people in Germany during WW2, our top dogs who run the NHS are not being challenged to take individual responsibility for the deaths of people with LD under their care.
Well put Pauline, I could not agree more. Just like Nazi’s (excuse) it is a team work killing learning disabled people in NHS care.
I saw the broadcast too Pauline. Chilling just how deep self delusion and denial can go.
Following this broadcast, I could envision an LA commissioner sat with a sherry on Friday evening, ‘excellent week, came in on budget again’.
In the real world in the same week people with learning disability in ATU’s are weeping for their home and their parents. Others sit alone in their ‘supported living’ room in deep depression missing all that was familiar in their former full of people days, all swiped away in a flash of a pen. Other sons and daughters walk slower than they choose, in the rain along a wet grey street. Their sweat pants/trousers too short and over washed, socks and ankles on show. In with a job lot of people, led by a carer who would rather be some one else.
A learning disabled man/woman with speech impediment struggles alone with call centre maze to GP; feels very,very ill. Told to come to surgery in 4 weeks. Cries in loneliness pain and fear. Or same person is burgled and sits traumatised. No one comes to help them, hold them and or comfort them. For help only comes once a week, and today is not the day.
In a bungalow in a suburban street an old man struggles with a 30 page application for Personal Independence Plan for son/daughter while his old wife carefully feeds same middle aged learning disabled son/daughter.
Etc. Etc. Etc.
Been a good week. Job well done.
Well, I met some Greenham Common women about ten years ago at an International Women’s Day dinner for about 50 of us (a mixed crowd of professionals and other), and it felt so good to sit and eat with them. I’d only ever seen them on the news when I was in my teens. Many of them had comfortable lives, but left that and dared to fight for the greater good.
Without the victories of the animal rights protestors, animals today would still be treated badly by the industries that abused them freely without controls – it was terrible.
There are so many movements.
We’re protecting our children and others’ children, who as ‘weary mother’ says are in ATUs or ‘supported living’ rooms, alone and away from the people who they really need ( as all other people need families, as do care staff). They know they need good care and a parent to hold them and comfort and engage them, and even though families might not be able to do all the care, it is the care that most of us would want, and far less costly overall.
The Royal College of Psychiatrists’s best psychiatrists say that ‘hope, opportunity and sense of agency’, are the 3 things absolutely needed for mental wellbeing for any human being. So are bad psychiatrists not listening to good psychiatrists?
If health and social care really have no expert care workers in the community and there’s no real monitoring, then we must address this.
If the LD care industry want to profit, they must do right by us first, as our families lives destroyed as well as our children’s, while only they benefit, is not on.There must be balance and co-operation.
We have to tell our stories to audiences, although we probably are quite private people and would like it to be that way again.
FF2016 you quote that good psychiatrists say that hope, opportunity and sense of agency are the 3 things that are needed for mental wellbeing. I agree wholeheartedly. Like you I wonder why all psychiatrists have not used this ethos of good practice in their dealings with people with a learning disability.
People trapped in these hell holes called ATU’s have been sent there under the quidance of a psychiatrist. The psychiatrist is the lead clinician in these cases. It is the psychiatrist who decides whether they go home to their families or stay for more ‘treatment’ . Where are the good psychiatrists who believe in hope opportunity and sense of of agency? Well they are certainly not looking after people with LD who are suffering away from their families in ATU’s.
Looked at this post again in the light of day. A sense of urgency is what we meant to say. So tired after a long anxious filled afternoon arguing with psychiatrist for for my son to come home from respite. He thinks he is better off in respite, even though he is asking to come home.
My son is supposed to be at the centre of all decisions. The new care act said it should be all about him. Person Centred Planning, blah blah. All talk, no substance in reality. What a bloody farce this all is. No one with any power is listening to him. The power incidently is in the wrong hands. Good people caring for him being side tracked. A case of lions being led by donkeys.
I see you’ve reached the almost complete disillusion stage.
It’s the same for practically every complaint who loses someone via the NHS.
Prove negligence, small apologies,….then everything goes on as before.
In my case, six years and a whistleblower told me it was worse.
This person had objected to what was still going on – and lost the job.
Because post this situation, they then know they can get away with it.
A loss of a patient is basically viewed as financial collateral damage ….and the consequences cheaper than providing a better, more expensive service.
So I’d like to say,.
Don’t take it personally. You did the very best you could do for your son,.
It’s just the way it is.
Nope. It ain’t just the way it is.
No, it absolutely bloomin’ well…..is not..
There are legions of us, all dragged over the same nails as Sara and her family. Did/do the long pain filled disrespected years, lost, still lose the sweet precious time with our children and grandchildren; lose lost for ever days that should be filled with happy joyful memories.
Every, every sunny happy day stolen, filled with theft, a whole families life and all joy stained by outrage, grief and fear.
We are a legion who live every day with the knowledge that in spite of all we did, and all we are, and all we could be, we failed to protect our son or daughter from the people paid to do just that. And we all, are still disrespected (never tolerated) at best for fighting on for so very long….. We all got no accountability and no justice.
We are still here. We are no longer alone. While we live, we are not going away. It is our job.
So bloody well said Weary mother.
So well put, your words go right to the heart of the situation we find ourselves in. I think maybe Mark Neary would like to use your words in the new blog.
Well said, you speak for me and it is a small comfort to know I am not alone. The complaint handling system is breaking me, and my husband is still brain damaged. Could have been worse though, he can still walk and do things. Small mercies. We stand stronger together.
Captured it, nailed it and I feel it every waking minute of every day….do we hang on, or let go? And weary? you bet.
My husband didn’t die, but he is brain damaged, the worst, the very worst thing is that the people who are meant to look at the ‘wrong doing’ make the complainant out to be idiots that hang onto grief for our own self gratification!
Yes we are still here, and we are no longer alone, and while we live we will not go away because it IS our job….well said Weary Mother.
I agree with Sara – a year or so ago I had to fight damn hard to get people to agree to my son’s choices. I did so because I knew that his choices are at the heart of his well being and without them he too would have ended up in an ATU. Without LB and Sara I would never have known how fragile my place in his life could be. Nor would I have known just how many people with learning difficulties die of unexplained causes in our institutions. And I probably wouldn’t have had the strength and the courage to fight as hard as I had to. As I sit here typing this I can hear him humming to himself, happy as he has been for a while now and I am grateful to Sara because through her struggle she hasn’t just been doing the the very best for her son – she has been doing the very best for all of our children.
But Jatroa I do agree that they have been getting away with it and that people are seen as collateral damage – but things are changing and it is going to get much harder for institutions to hide their shabby practice. It might be the way its been but it’s not the way things are going to be.
Well, it is the way it is – but it is not the way it should be! If enough of us keep on long enough trying to convince the unaware that people with LD are not some burden that can be treated this way with impunity we can at least make those at the top get a bit uneasy. Ideally,á lot more than a bit.. It is only when there are consequences for them, serious consequences, that things will change.
If it isn’t the way it is.. Give me the name of that ne person who got the sack.
Sorry……. ‘one person who got the sack’.
Warning signs from the Francis Report.