Too never ever for Neverland

Discussions over the last couple of days, with Rich, Rosie and others have got me thinking about what’s happened since LB died in terms of (official/professional?) support offered to us. And how if LB had been murdered, died in a road death, mass fatality, or any other ‘critical incident’, we would have had a Family Liaison Officer.

The National Policing Improvement Agency states;

“Family liaison is, without a doubt, one of the most demanding roles performed by the Police Service. It is also one of the most important because it is one of the the most significant relationships that we develop with the families of victims, at one of the most difficult times in their lives”.

The Family Liaison Officer role involves conducting appropriate investigation and the human rights of the family. Acting as “a channel for welfare, occupational health and support”.


Now I don’t know how this works in practice. Maybe it’s shite. But I suspect not. When your child/relative dies a preventable death in the NHS you aren’t a ‘family of the victim’ for several months or years (or ever). Until that ‘preventability’ is established. You ain’t really anything. Even though you’ve experienced the same brutality as any of the criteria above. A brutality that is arguably worse because you thought your child was in a safe space. With people who cared.

So no Family Liaison Officer. To look out for our human rights, and welfare. Instead we were Ieft pretty much alone with varying crapshite communication from the Slovens. We got a letter a week after LB died from the Acting CEO. After running through the distancing “deeply saddened and sorry to hear of the death of your son” (as if it was the last thing she might have any responsibility for), she finished with the meaningless and completely throwaway sentence;  “If there is anything we can do to help or support you please do let us know”.

Hi Acting CEO… We’re all kind of falling apart at the seams here and struggling to hold onto anything. Not really in a space right now to think what help or support we might need. In fact, we can’t think of fucking anything other than being forced to think about coffins, clothes, flowers and cremation/burial for our dude who should never have died. Can you even begin to imagine that? Agreeing to switch a machine off that is fakely keeping your child alive? After he’s drowned in a bath in a specialist unit that you are responsible for? 

But hey, thanks for the letter.  

It was apparent to us from the moment LB died that his death was preventable. But the only support ‘offered’ to us was from an organisation (with others) responsible for his death. How can this model possibly work?

A recent report by the NHS Never Events Taskforce takes a sensible and informed approach to how the NHS should respond to so called ‘never events’. It encourages imaginative forms of ‘restitution’ such as offering practical and therapeutic help. And the importance of making ‘sincere apologies, not what looks like a standard letter from the Chief Executive’. The old Sloves may have an award winning and inspirational Chief Executive (stay classy Health Services Journal/judges) but they don’t half shine when it comes to exemplary ‘how not to treat families when you’ve let their child die’ actions.

But LB’s death didn’t even count as a ‘Never Event’.

It was too never ever for Neverland.

9 thoughts on “Too never ever for Neverland

  1. My god. An astonishing lack of compassion towards you as a family. Awful. I know its not the same but When our 25 year old beloved son john died of cancer in hospice we left him there in bed in his pyjamas and went home. We were not victims requiring support but we required support and we got nothing. No follow up. We Just went home. The loss of a child is terrible and family support is necesssary. We wrote and thanked everyone who tried to save john. No one replied. Maybe its about some legal stuff. Sorry for your loss in some way traslating into something with potential consiquences. All bereaved families need immediate and ongoing support obviously. This applies in all circumstances. ‘ If this was a child of mine ‘. It was a child of mine and the only think I could think was that we should all die on the same day to avoid the pain. Then we just went home. Without him and got stuck in a traffic jam. Nicki
    Sent from my BlackBerry smartphone from Virgin Media
    From: mydaftlife
    Date: Tue, 8 Apr 2014 20:59:13 +0000
    ReplyTo: mydaftlife
    Subject: [New post] Too never ever for Neverland

    sarasiobhan posted: “Discussions over the last couple of days, with Rich, Rosie and others have got me thinking about what’s happened since LB died in terms of (official/professional?) support offered to us. And how if LB had been murdered, died in a road death, mass fatality”

    • My heart goes out to any family dealing with the loss of a loved one especially a much loved child (which we all stay!) My son was 29 when he died and all the Trust could do was to send his possessions back to us in a bin liner marked ” NHS Household Waste”…Oh and his phone was used after “the incident” ….was he murdered? As police were not called (but we were told they were) I dont know! The Inquest had key documents withheld by Trust and I was in deep shock! I trusted the systems in place to protect us…they didnt!

  2. Gosh that post took me right back to a time almost forgotten (or if I’m being truthful a time well supressed). My Husband of almost 20 years was killed in a horrific car crash 5 years ago – hit by a car full of young lads – they were only kids really. Much of the time soon after is a bit of a haze but one thing I do remember is Barry. I have never been a fan of the police – observing their heavy handed tactics in the 80s at the Notting Hill Carnival and getting stopped by the traffic cops time and time again as motorbike riding youngster left me distrustful. Barry was my Family Liaison Officer (FLO) after the accident – and up until I was allocated one I didn’t even know they existed.

    He came into my life, gave me a mobile number (‘ring anytime night or day’) and called me ‘mate’ – it seems so stupid now that this was something of note – but at the time it felt totally right and laden with empathy. Unbelievably he visited me at home everyday – steering me through the complex legal and practical procedures; negotiating my dealings with the press (3 of the young lads in the other car also died so the press were all over it like a rash); sat while I cried and joined in when I laughed. He even chaperoned and translated for ‘proper policemen’ who visited in uniform to ‘brief the family’ but couldn’t quite manage empathy. He had a job to do but that never over-shadowed his genuine empathy and the fact that through all the shit he was the one person who was all mine.

    You picked the right word …wow. Every family going through what you’ve been through needs (and deserves) a Barry. And as I sit here dredging up stuff lain dormant for years I feel real distress that Barry isn’t there for you like he was for me.

    • I couldnt agree more! When my son was “found” fatally wounded in hospital “for his own safety” (ironic eh!) I wasn’t offered a Barry either…..but I was offered grief counselling 6 YEARS after my sons tragic death! Thank you AJ for sharing your story and I’m so sorry for your pain!

    • I’m afraid that shows the difference in attitude to a ‘typical’ person’s unexpected death and to that of someone with learning disabilities or mental health problems. We lost a relative whose actions during a hallucinatory/psychotic episode (which resulted from the effects of an undertreated physical illness) cost him his life.
      The police were mainly concerned that it might have been his wife, rather than himself, who had done the things that caused his fatal injuries. They treated her as a suspect and wouldn’t let her stay with him to say goodbye while he was still conscious (she knew immediately that he couldn’t survive his injuries). By the time they were satisfied with witness accounts exonerating her, it was too late. He was in an induced coma from which he never emerged.
      Once it was formally established that his own actions had led to his injuries, that was it. There was less than no interest in what might have so swiftly reduced an intelligent, rational and considerate man to such a state of abject irrationality. The police took no further action, before or after his death nearly a day later. There was no Barry. There was no steer about the post-mortem or inquest processes, through which we floundered blind. Investigations that we requested were ignored, but we weren’t told that they would not be done, so we could not arrange for them to be done independently.
      We tried everyone we could think of – social services, bereavement charities, health services – to get emergency counselling and care for his wife, who was in a state of blank, trembling shock for days. No-one would see her except an out-of-hours GP, who merely patronised her appallingly with a spate of trite, condescending platitudes, before prescribing unwanted tranquillisers.
      The press positively hounded the family and neighbours for ‘juicy’ details, in breach of the relevant sections of the Press Code. The family had to fight fires in all directions, and did it all unaided.
      We wrote an extensive report for the inquest, on which the eventual verdict appeared largely to be based. Had we not done so, it seems likely that no account would have been taken of the underlying physical illness. It was not mentioned in the pathologist’s report and there was no other medical evidence to the inquest apart from what the family submitted. The police evidence misspelled his name, his address, misdescribed the location, included paraphrases of what had been said to them, that the people in question said were misleading or based on misunderstandings ….

      I’m glad you had Barry. I wish we had had a Barry too.

  3. Having a learning dissability sets you apart from others because “you” are different sadly so different that in a preventable death like LB’s the so called “care” system who were responsible for his care and death can only offer a standard letter “sorry for your loss” a family is left in complete shock and unbelievable pain having lost their adorable healthy dude as LB’s mum points out there is no family liaison/support that exists in these circumstances. This kind of confirms the opinion values and respect towards a person who is learning disabled and their loved ones is non existent! The death of this amazing young man is a shameful example of the care system and it’s well heeled and honoured bosses who claim to support people with learning dissabilities who have no voice because no one has ever listened! The priority here is to distance yourself asap as if nothing has happened no counselling for staff or other residents send a standard letter to the family “job done” how do these people sleep in their beds at night?

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