The sound of candour

Quiet day yesterday. Reading through the final report. A combination of analytic focus on content and sickening agony. I felt like uploading it, pressing ‘publish’ and walking away. Sick of the struggle we’ve had to get to this point. We all are. It’s been a distressing, relentless, time consuming (costa del fortune) experience. There have been so many battles with Sloven Health (SH). So many times I’ve received emails or phone calls, at work, home or elsewhere. Relaying developments, steps backwards, shifts and delays that have made us howl and weep and rage beyond rage. I feel battered, embattled, crushed and physically shrunken. I know Rich feels the same.

LB died. And he shouldn’t have. As simple as.

Our beautiful dude. In an NHS setting where we thought he was safe. A systemic failure in the most basic provision of care. Yet SH were horrifically quick to badge his death (a healthy, fit and lively young man) as ‘natural causes’. How often does this happen? Howl

SH (I can’t call them the ‘trust’ anymore) have embraced a new, shiny, transparency and openness in the last few days. The hills are alive with the sound of candour and all that. (Weirdly, or maybe fittingly, Maria von Trapp died around the same time.)  The report will be published (fully redacted, and almost unreadable) on the SH website tomorrow. At some undisclosed time. Good it’s being published. Not good about the redaction.

A request to any media interest in the report: please don’t run with a superficial and largely meaningless ‘lessons learned’ angle.

Instead could a critical lens focus on;

  1. how an NHS trust can openly operate such a sub-standard level of care in one of its units (at a cost of around £3500 per patient per week). They didn’t even up their game for a CQC inspection eight weeks later. And no professional who went in there, even the swat team who pitched up after LB died, noticed anything amiss. [A focus not just on SH here but also commissioners, the local authority and higher up the chain…]
  2. how widespread is such appalling learning disability provision? [On a slightly more positive note, last week’s CQC board meeting demonstrated a strong commitment to change (around 1.02). LB was one of the 3 lives discussed].
  3. how does the post-Winterbourne View work square with what happened at STATT?

What happened to LB should add weight to the call for closer scrutiny on premature deaths among learning disabled people. It’s beginning to sniff a lot like euthanasia through the backdoor from where we’re sitting.

Anyway, in advance of this report becoming public, here’s a short film of the dude. Because he counts. Like billy-o. In buckets.

Action stuff:

The report will be published at some point tomorrow.

You can sign up for email updates of our campaign here; http://eepurl.com/O1cvH

You can follow @JusticeforLB on twitter.

If you tweet about the report, it would be fab if you could include #justiceforLB so we can keep a track of thoughts/views/comments.

I’ll set up a new tab on this blog for discussion/thoughts about the report. These can be a comment as usual, or as a ‘guest’ post (either anonymously or with your name included). Please email these to justiceforlb@gmail.com. And any thoughts or comments are welcome. From the heart, from experience, from a practice, academic or policy background.. Whatever…

Finally. We couldn’t have got this far without remarkable support in many ways from different sources (expected and unexpected). It shouldn’t be that families have to rely on having networks in place, or access to relevant networks, to be able to get anywhere when something like an unexpected or preventable death in hospital/social care happens.

This is where social media can really kick ass. Discussion/thoughts about this to be continued.

19 thoughts on “The sound of candour

  1. Pingback: It’s Mothers Work | All Aboard The Trauma Train

  2. Ah what a beautiful video tribute – crying watching it .Thinking of you and your family heartache and pain these last few months – can’t even imagine ,don’t even want to try . You are a true inspiration to everyone seeking truth & justice and to all us Special Needs Families a beacon of hope .Sending hugs.xxx sleep tight LB xx

  3. Pingback: “Let it not be about lessons learned” | Indigo Jo Blogs

  4. It is impossible to understand how wicked people can be. It is exhausting to confront it.
    Your video is wonderful and right – your Laughing Boy’s life complete. You carry him with you for the rest of yours and you let us share him too. Thank you.
    Allow yourself to rest. Even for just a little, now and then. Fighting injustice never stops, you need to give yourself time off, even if just in your head. I wish you those times of peace in the future.

  5. Hello I found you after reading Jax’s blogpost this morning (liveotherwise). I just wanted to say something, anything, really. My heart goes out to you, your family and your dear laughing boy. I am so sorry that you are having to fight this battle, but I am so very glad that you have the strength to do it. These things ought never to happen, but when they do, they must certainly NEVER go unnoticed by wider society. I am frankly distraught at the utter lack of care and compassion shown, by those who have been dehumanised by the institutions in which they are cogs, and those in positions of power who would rather protect an entity than a living, breathing, laughing, beloved person. I hope that your fight shines a light into the darkest crevasses of our ‘care’ system and forces people to truly see the horrors that are done to our most precious and vulnerable ones. So much love and strength to you all xx

    • I would like to echo the words above totally. So brave fighting for what is right, how long will society ignore what is happening on a daily basis in this neglectful places!

  6. Sara – I left comment on SH website – received the below email today ……..they must be very worried about public opinion…. SOLIDARITY…. XX

    From Subject Received Size
    Southern Health Communications Response to comment through the website 12:21 10 KB

    Dear Audrey,

    Thank you for your comment on the publication of the review into the death of Connor Sparrowhawk.

    The Southern Health NHS Foundation Trust has accepted the findings of the independent review into the care we provided for Connor Sparrowhawk and has apologised unreservedly to Connor’s friends and family for its failure to keep him safe.

    The Trust is now addressing the findings and recommendations made by the review team in order to ensure that it provides the best possible care for all its patients.
    It would be inappropriate to comment further before the inquest into Connor’s death which is expected later this year.

  7. Soo.. Connor was in the care of Southern Health. Staff failed to follow procedures designed to ensure that health information was given its proper weight. Clinical leadership was absent, and management audit procedures didn’t highlight problems and failures. As a result, Connor was exposed to avoidable risks, which led directly to him dying a premature and preventable death.

    Is the CPS going to bring a prosecution under the Corporate Manslaughter Act 2007?

    The facts above would seem to constitute prima facie evidence that an indictable offence has been committed, viz, the way in which Southern Health’s activities were managed or organised
    (a) Caused Connor’s death; and
    (b) Amounted to a gross breach of a relevant duty of care owed to Connor by the Southern Health.

    Of course no prosecution will help Connor, or his family. No apology, no punishment can palliate their situation. But it will help other families who are facing similar situations in other Trusts (Sloven Health is a long way from being the only one). Pursuing justice shouldn’t be down to Connor’s family. This should be a matter of public policy.

  8. Dear Sara
    I am so distressed to read your story and the sickening report. It doesn’t take a professional
    body or any director to see that the unit was wrong for your son right from they start. As pointed
    out by Mark Neary, there seems to be a complete lack of understanding of autistic anxiety and
    how a young person, especially at transition age, can find it stressful in the extreme which can
    magnify itself in challenging behaviour. In our experience with our own autistic son becoming
    an adult where suddenly ‘it’s your choice you’re now an adult’ brings extreme anxiety and
    agitation and on they other hand ‘you’ve made your choice now stick with it’ (favoured by the
    view that in time they’ll learn!) also causes extreme anxiety and challenging behaviour, quite
    often because they’re actually terrified! It is usually the parents who have had year’s of
    experience of dealing with these anxieties on a daily basis who have the best understanding
    and EMPATHY but they are, all too often, ignored and side-lined by the, so called, professionals.
    We are many voices saying the same thing but we are saying it separately. We need to combine
    together and form one effective voice in order to change the policy that controls these
    devastating situations.

  9. Dear Sarah

    I am so sorry for your beautiful boy

    The central struggle of
    Parenthood is to let our hopes
    For our children outweigh our
    Fears.

    We are criticised for how they see. Services,social workers and faceless decision makers
    Over protective
    Holding them back
    Not allowing them to lead their own lives
    Not letting them be independent

    We trust them with our lives
    And they protect it with danger

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