Summary of a 4615 word letter about what happened to LB below sent [to anon] by an Oxon Commissioner in 2014, forwarded to our legal team just before LB’s inquest. Beware the wrath of middling/senior public sector figures if you want to publicly document your experience of public sector provision is clearly the message here. An illustration of the toxicity of local authority/CCG practice. [Rage warning.]
A tale of mother blame.
Deference to a bereaved mother means that she has been able to tell a partial story. This is frustrating. I know through inside information that not all that’s written on the blog is accurate. I mean LB’s recent diagnosis of epilepsy was the least of the family’s worries. The children’s team told me this. His mother often rejected support only to come back wanting it immediately. She accused social services of harassment and told the social care manager she should have read her Facebook page to know she wasn’t coping.
It’s my understanding that his mother was the one who pushed for admission. She didn’t want LB home and was pushing for a supported living service that can’t be magicked up in a few weeks. [Christ]. She refused an increase in LB’s direct payment package and never made a complaint which was obviously the sensible thing to do.
It was clearly a difficult time if you read her blog however not everything she reported was accurate. She frequently took lines out of emails people sent her out of context and posted them. And wrote things staff disputed. A colleague was trying to get LB out of STATT but because Sara Ryan didn’t want him home, they didn’t push it. In hindsight, they should have just discharged him.
I’ve read the minutes of the Care Programme Approach meeting where bathing was discussed. There were no minuted objections from the family to the idea that he should be left alone in the bath. He hadn’t had a seizure for a year so although in retrospect, 15 minute checks look unsafe, it may have been a reasonable risk assessment at the time. His mother and her friends tried to make the CPA meeting person centred and this was why vital things could have been missed. You can’t really have person centred planning fitting with clinical health processes. [Tsk].
I know that Sara Ryan doesn’t think this but the majority of STATT staff are very caring. People cried all weekend after LB died and still people are shaken and upset by it. The huge amount of negative publicity that has been generated continues to cause them immense stress. Sara refused to speak to anyone except via her sister and has made it difficult for open honest communication.
Once STATT was closed, and SR was banging on in social media land about stuff, we’ve been unable to do our jobs properly. Patients have nowhere to go and we’re too scared to say anything because of that pesky blog. I still believe that the worst services were always outside of Oxfordshire. The trouble is that SR’s anger is unproductive and her blog is causing problems. She names and shames people and causes illness. One friend was off work sick for two days as a result of one post. I believe her campaigning has done a lot of damage.
I originally thought LB could have died anywhere but I now know [after publication of the original Verita review] that Sloven were responsible for his death. Despite SR refusing to speak to anyone, Sloven did themselves no favours by retreating. We usually do a quality visit after an unexplained death but the police and HSE were investigating. We asked the local NHS England team for the highest level of investigation but it wasn’t until SR spoke to David Nicholson that Verita were appointed. We argued for a family advocate but weren’t listened to. We didn’t visit STATT ourselves because a lot was going on and before we were able to review the unit the [pesky] CQC pitched up. They used a new form of investigation looking at stuff they wouldn’t usually look at (medication storage, clinical waste, batteries in defibrillators and so on). The CQC inspector gave us mixed messages and I certainly felt there were some wider politics going on.
I was really shocked by the Verita findings and had no idea that LB was experiencing increasing seizure activity or that risk assessments weren’t being conducted. I believe we at OCC had no way of knowing that we weren’t being told the truth by STATT staff or that Sloven weren’t checking on things. It’s the STATT team who will have to live with LB’s death for the rest of their lives.
I do think in hindsight we could have perhaps followed up on the blog and done some more checks in recognition of the fact a new organisation was taking over, but we were so stretched, I don’t think we could have done much more than that.
I know LB’s death was horrific and upsetting and I know his mother will never get over it. But you can never guarantee 100% safety and it’s not good for people to be continually checked. I’m fairly confident we’d have picked up STATT’s deterioration at our next visit (we do it all the time) but sadly it was too late.
I feel immensely sorry for Sara Ryan, it is terrible she has lost her son. However, I believe bloggers have a duty to be honest, and accurate; and some of the effect of her campaigning has made things difficult not just for professionals but for other service users and families. My hope is that she can find some kind of peace with this, and that one day, she might be able to move on.
Oh fuck right off.
[I’ve never met this person].
Unbelievabl bull as you never realised it existed before the day Connor was admitted,I know because I told you about it that day.I recalled someone telling me there was a local unit when my own son was discharged from a unit 170 miles away but he was too young for Local unit as he was under 18.I think if this person checks their facts they will see that youcontacted PALS that day to ask about it.As for friends attending(OXFSN) the CPA and trying to make it person centred..Yes Yes Yes Maybe they should read the report OXFSN wrote afterwards
What a shocker. Wrong on so many levels, it’s impossible to count. Your campaigning has been anything but damaging: You have articulated brilliantly and heartbreakingly what happens when public bodies feel no empathy with those they are paid to serve.
They construct a web of lies to cover up the true facts around a death due to negligence, then express hope that you ‘move on’ from the most catastrophic thing that could ever happen to a human being. ‘Move on’ being a euphemism for ‘be quiet and stop exposing our lies’.
Gutted for you that you have to read this disgraceful character assassination
So if someone hasn’t had a fit for a year it is OK to leave them unattended in the bath? When their life has been turned upside down and their drug regime changed?
Do these people not understand anything about epilepsy?
As for the rest – unbelievable is just about the only fitting word. And maybe terrifying, as changing these kind of attitudes is not going to be easy. As you say so heartbreakingly: he died.
I could not believe what I was reading. I was training some commissioners in planning and one particularly toxic bitch said ” when I see what you could get I wish I had a disability” . This letter has given me a similar reaction to the words spoken from that woman. Just incredulous that these people exist in any caring profession. LB died, they are all guilty by association and yet they continue to try and justify their existence and part they played by writing about you Sara. I say this constantly about someone I’m helping to get justice for. The state took over his welfare. They were paid a fortune to provide him with mental sanctuary to get him better. He died covered in his own excrement, alone ( I repeat that only because his mum has shared it. ). These people need to hang their heads in shame and take responsibility and butt out. As for giving you their condolences I bet you know where you want to shove them.
Mum/dad don’t even try to have a peer to peer dialogue within some LA’s, it will never happen. Cracked mirror is very well installed in that distorted bubble. Forget the outside world of peer to peer shared understanding, for self installed super status and power rules here.
We have all learned our role is to behave nicely at all times. Behave ‘Am good, am being a nice person boss. All is good boss – see look at me for I am being really nice boss’. (Pause for low bow, cap brim tugged and brow well knuckled)
‘See…, look at me, how I am just a very nice smiley stupid know nothing at all about anything and less about my son/daughter.. nice person and …….am so very grateful to you all the time, boss. Pause to smile and pass chocolate biscuits to boss,
Our sons and daughters worked it all out long before we did. Or they get put away in a horrible place far away where they learn how to be nice…..every day.
Behave nicely mum and nice dad, always. Think, ‘I will lay on my belly and beg your toes boss, but please don’t hurt my son/daughter and please don’t take his care away again just because I tell you he/she is in danger from you and your team’……..
Mum dad, …..just keep on being nice and win the being nice ‘Oscar’ every day ……or else……..
Pantomime and open season on complainants is year long. The hurt is felt uniquely but I honestly believe it is dished out by the bucketful in a standard format. You refused help and then demanded it, you are a shit, I hope that gives you the reassurance you are seeking. Same old same old. No quality visit, no love lost he could have died anywhere anytime. I am thinking that if you ever want to deeply offend a bereaved person you should offer finding peace and moving on as a path to follow. Offer it up to a Mother who’s son died a preventable death? Nice
This reminds me of the bully’s tactic of accusing the bullied person of bullying. Just accuse the bereaved parent of hurting other people.
None if the people caring for or involved with LB were ever named in the blog.You were at pains to say that it was the organisations that should be accountable. I am also at a loss to see how you could have caused damage’ to services. The CQC found what they found. Poor care and any closures were the responsibility of Sloven and OCC.
The rest of the letter is so ludicrous I wouldn’t know where to start. Just keep your chin up and remember (sadly) that this has happened to other families too.
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What a piece of absolute shit that person is! The staff were crying all weekend were they? What about you and your family? Unfuc*ingbelievable!
Absolutely shocking. Don’t know what else to say really.
What the CQC and any other agency found at Slade Hs was written as a truth, and in the public interest to be made known. Equally I believe this commissioners letter should be in the publics interest too as an example of poor attitude and heartless words from an excuse for a human being.
Bunch of cnuts and that’s it.
I too have to rely on Southern Health for respite care for my daughter and am very wary of the services OCC offer. This wariness does not come from what happened to LB, although that hasn’t helped. The wariness comes because I have had to fight tooth and nail for every single thing. I blame OCC for the break up of my marriage. I telephoned them when my marriage was under stress and asked for an assessment as a carer. They told me that they didn’t consider Down Syndrome to be a disability????!!!!! I blame them for the fact that my ex subsequently stopped seeing his children, meaning that they have deprived all my children of a father. I blame OCC for my break down three years ago, for lack of support for not just my daughter, but my family as a whole.
The problem isn’t the service provided….. the problem is TRUST. After sixteen years of having dealings with both The Education Dept and Social Services. I know they tell lies, I know they don’t inform me of my families rights, or communicate properly with me.
I have also been branded as “Very Difficult” merely because I care about my family.
If when I first phoned years ago, someone had come to see us put measures in place to help my family they would have saved themselves shed loads of money, but they are so blinkered and shortsighted, that they only seem to be able to do Crisis management, and then not very well.
Disability services in Oxfordshire need a massive overhaul in my opinion….but it won’t happen, because the powers that be don’t care.
What happened to LB was an incident waiting to happen.
And all of the comments above are spot on. Sara my love all our hearts are with you for you are shining a clean courageous bright light into the worse corners of a dark deluded brutal Public funded ‘care’ world.
What kind of world is it where a loving family is bereaved of a beautiful unique son through incompetence of people paid to care for him and keep him safe, and then is jeered at openly and proudly by the same deluded incompetents, when she courageously fights on for justice for him and others?
What kind of world permits weary elderly parents to live crippled with fear of the next crises, and every minute with the bigger fear of raising the issue with a nasty and failing Public organisation.
Old parents have lived long with pared down lives, and are now increasingly deep in anxiety and stress from filling many dangerous gaps in care. Very often a sole old parent broken down with additional fear to question anything for will routinely produce a dangerous and childish petulance that rebounds on son/daughter.
I recently attended a care review on my middle aged LD and physically disabled son/daughter who has capacity and lives alone in ‘supported’ living. I begged for just a little bit of help for my son/daughter to access routine health care. Many LD sons and daughters living in ‘supported’ living are stuck in the limbo of no health care at all because of the deadlocked wrangle between LA and NHS around whose job/budget it is to ensure access.
The reviewer stated chillingly ‘you are asking for institutional care for ………'(son/daughter). ‘NO!!!!!!.!!!!!!…just a little bit of help to get to he/she to a doctor . I have learned again.
Warning shot has landed. I am afraid.
Frankly, I’m shocked. What a horrid report.
This guy clearly lacks any compassion.
I just can’t understand why people like this work in the care sector.
Jesus. Right let’s look at this.
The very huffy person writing this comes over as childish and defensive. “There was nothing much to worry about and it’s all Slovens’ fault and we are all upset and it’s the mothers fault for not going for “open honest communication”. Besides ! The mother rejected stuff! She mustn’t have wanted help! Boo! boo! And taking 107 days to do nothing about lining updischarge with adequate support..well, things can’t be done overnight! Oh, and sorry he is dead. That upset us. And the inadequatcies inthe unit..,well that is nothing to do with us either.”
It is hard to type when I am this angry but here’s an observation. Parents are vilified for rejecting help. This, it’s claimed makes us bad people who,for some twisted reason don’t want help, can’t be helped.,possibly it makes us people who don’t care fo our young people. You wanting LB admitted, to get help is flourished as some sort of trump card, and you wanting him out with adequate community help is relabelled as not wanting him out at all.
In my experience, rejecting anything no matter how inadequate unsuitable or hopeless means I am vilified as not wanting help at all. This will be done even if what is offered is, bluntly crap. If it won’t work.
It’s rather like hanging from a cliff yelling for a hand up. The person above you offers you a bicycle , or more likley a pamphlet on how to manage the stress of hanging off cliffs. You shout you don”t want these things. They tell everybody at the top of the cliff you must really want to hang there.
Otherwise known as the “help” that is no help. You get offered what they want to provide, and when you point out that it is not going to solve your problem, but may well solve theirs, then you become seriously unpopular.
I have been walking this tightrope for years – but generally don’t do confrontation well and have been luckier than most in avoiding disaster. But not asking for more for fear of getting less has reached ridiculous levels, hasn’t it?
The consequences of being labelled “difficult” can be pretty terrifying in our cases. Mother blaming is always popular, and seems to be getting easier than ever. I have been pleased to see that the odd judge has cottoned on to the idea that not all social workers are saints, but the odds are still stacked against us. In the recent case of blatant perjury, they still got what they wanted.
Sally, witness Patrick Marcrows mother who when exhausted, depressed and driven beyond endurance killed her beloved 40 plus year old son who had Downs and autism. I looked up the press info of the time (a decade or so ago), and saw that a director of the LA, on court steps post her suspended sentence of murder, allegedly, said that Patrick’s mother had refused their help. Other press records, allegedly, stated that her son had been excluded from day care and that she had had minimal if any support offered by LA. Neighbours, her vicar and her small community all described her as a kind and caring and devoted mother. Who knows who is/was right. But so very sad.
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I can’t actually believe what I am reading here and its written by someone who has never even met you? Who would write such a letter and at whose request?
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