Making It Up

as we go along

I remember his jeans were wet.

by 38 Comments

Tonight I saw the #JusticeForLB stream on twitter. It’s about a teenager who drowned in a bath in an NHS assessment unit. Despite him having a history of epilepsy, he was left to bath unmonitored.
And I was instantly dragged back in time to that night.
My sister drowned in her bath. It’s a disturbingly regular occurrence for people with epilepsy. I don’t know whether Katrin knew the risks and discounted them. I know that she was massively strong willed, and that if she wanted to take a bath, she would have taken a bath.
And she did, and she died.
LB shouldn’t have been at risk though. He was in a safe environment and it is utterly disgraceful that his family are living with his loss. I don’t follow the campaign closely, although I’ve read his mother’s blog a few times – I find it too painful to read too often.
If I read it too often, I’d cry again, like I did tonight, blinking away tears in the car. I’d remember little details flashing back, like the fact that BiL’s jeans were wet when I arrived in the hospital. Wet from where he’d dragged Katrin from the water, tried to save her.
I’d remember the sound of my father’s voice on the phone from their holiday, apologising because he wasn’t there in the hospital with us as we sat in shock, together and yet utterly apart.
I’d remember BiL asking me over Katrin’s body “what do I do now?” and not having an answer for him.
I’d drip tears like I’m dripping them right now, writing this post.
Katrin is gone. I can’t bring her back. LB is gone, his death can’t be undone. But the system needs to accept responsibility and make changes so that no other family trusts their child to people who fail to take the most basic precautions. Fail to keep them safe.
Epilepsy can, to a large extent, be managed. People with it live healthy and fulfilling lives. Katrin certainly did. She raised two children, had a job. She ran, was fit and active. But epilepsy still claimed her in the end. It claims too many people, far too early.
It shouldn’t have claimed LB. He was even younger. He was in what should have been the safest environment possible. And I’m completely behind his family in their fight to see justice for LB. It’s the least they deserve.
Now if you’ll excuse me, I need to go and cuddle with my children. And maybe cry a little more.

Reader Interactions

Comments

  1. I’m usually fairly useless with words – now more so, but just wanted to stop and say that you’re absolutely right, it’s a travesty and it absolutely should not, must not, happen again. That’s it. Nothing else that I can say. (((hugs))).

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  4. I’m so sorry Jax. There is a family of girls in my village who lost their mother in identical circumstances to Katrin.
    Lucy

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  5. So awful 🙁 We witnessed a lady have a seizure on the travelator at sainsburys the other week which, of course, was cause for discussion with the children. I told them about Katrin. You were all held in our thoughts, and are in mine now again now too. xx

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  6. I knew that you had lost your sister, but not the circumstances. How cruel, and what a dreadful loss for all her family. I had no idea that even “managed” epilepsy could still pose such a deadly risk. So very sorry for your loss.

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  8. I’m so sorry, Jax. A close relative of mine had childhood epilepsy and a child myself I found it terrifying. We’re blessed to still have him with us. I’m lending my support to #justiceforLB in the form of some scheduled tweets over the next few days.

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  9. Hi Jax, thanks for sharing.
    Living with Epilepsy’s never that easy, sometimes we forget or try to forget, the dangers and I guess it’s just so we can manage and live best way we can. From the sounds of things your sister was a lovely person.
    I’m supporting #justiceforLB too.
    (((hugs)))
    Maz x

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  13. Incredibly moving. I have epilepsy and actually never considered the bath being a danger because I only have fits at night whilst I am sleeping. Thank you for sharing your story and pointing this danger out to myself and others. Much love and peace being sent your way.

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    • Hi Amanda, I don’t want to scare people unduly but I think this is massively important. Katrin’s epilepsy was nocturnal only for years. I don’t know what changed it or when.

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  14. Your love for your sister comes through this so clearly. I’m so sorry you lost her too early. I hope that eventually the joy of her memory is greater than the grief. Sharing your loss has made me aware of something that was completely off my radar. Thank you for opening my eyes.

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  15. So sad. I’m so sorry for your loss.
    This has really hit me hard. Oz has been seizure free for a year now but I worry all the time. Thankyou for raising awareness and sharing such a personal story.

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    • I can understand the worry. I don’t know a lot about childhood epilepsy, is it possible he could grow out of it. Sorry to have caused upset.

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  16. I was on the unit the day Connor died. There was no recent history of epilepsy and the last one I believe was at his mother’s house years before. We followed protocol and have nothing to be ashamed about. If this had happened at his Mother’s house would she have sat with him? Connor valued his privacy and did not want us in the bathroom with him.
    Witch hunt springs to mind.

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    • You have come to the blog of someone who lost a sibling to epilepsy to defend the indefensible.
      The thing that’s not posted anywhere here is that years ago I worked as a residential social worker, and several of the people I worked with had epilepsy. And when they bathed, we sat within earshot. That’s protocol.

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    • Is it you that’s been reading the posts about my sister’s death? Before you left your piece of poison? What is wrong with you that you can’t just say sorry?

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    • I cannot believe you have used a someone’s post about their sister’s death as a podium to defend your unit. Jax hasn’t attacked the unit here, she has merely referred to the tragic death of LB whilst sharing her story about her sister’s death, something that would have been incredibly hard to write about (I have never written about my mother’s death, I find it too hard to so I applaud anyone who can write about the passing of someone they love). Shame on you.

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    • JK,
      Shameful response! My son has epilepsy & if his seizures increase then we sit with him to keep a vulnerable young adult safe… Safeguarding out weighs privacy. LB died in the care of the NHS, there is no witch hunt people want justice so this does not happen to the loved ones. If you were on duty on the unit when LB died then you should show some remorse for allowing a vulnerable adult known to have eprilpsy die in your care… Shame on you!

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  17. JK: the Verita report into Mr. Sparrowhawk’s death found that he had shown clear signs of seizure activity while in the unit, including badly biting his tongue (which was treated only with Bonjela, for heaven’s sake!); that his family had drawn to staff’s attention their concerns that his seizures were increasing; and that those concerns had been ignored.
    This is why that Verita report found that Mr. Sparrowhawk’s death was preventable. He could and should still have been alive today if the concerns about his epilepsy had been properly taken account of and his risk level accurately assessed. Whatever ‘protocol’ was followed for Mr. Sparrowhawk’s baths in the unit was an insufficient one: it was not an appropriate epilepsy protocol.
    The responsibility for the failings may lie at an organisational level, or at an individual one, or both. To characterise as a ‘witch-hunt’ the search for answers as to how those insufficient protocols and inappropriate practices came to be applied so disastrously to Mr. Sparrowhawk’s care, is contemptible of you. The questions are eminently reasonable and necessary.
    And FYI, Mr. Sparrowhawk was not, ever, left alone in the bath at home after he developed epilepsy. There was always someone there, either in the bathroom with him or chatting to him through the door, to make sure he was OK. The unit had a duty to make suitable arrangements to ensure Mr. Sparrowhawk’s safety as well as his privacy. The two things were, and are, not mutually exclusive.
    https://whobyf1re.wordpress.com/2014/05/12/high-ordeals-oppressive-practice-and-twittertrolls/
    https://whobyf1re.wordpress.com/2014/03/25/sloven-spun-shitespeak/

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Trackbacks

  1. […] Today the report into the death (PDF) of Connor Sparrowhawk, an 18-year-old who drowned in an NHS learning disability unit in Oxford last July (see earlier entry), was published. That it was published was thanks to a long campaign by his mother, which faced much opposition from the NHS trust involved, which made such excuses as protecting their staff, and faced a last-minute obstacle when police delayed publication so as to consider a criminal prosecution. His death was the result of epilepsy, and he had been left in the bath with observation at 15-minute intervals, which is nowhere close to adequate when supervising someone with epilepsy in the bath. The report also exposes some of the inadequacies of Connor’s care at the unit, which was obviously ill-prepared to care for him and two of whose senior staff believed he should not have been there in the first place. (See also the Southern Health NHS trust’s statement and the family’s solicitor’s report. More: George Julian, Funky Mango’s Musings, Rich West, The Small Places, Mark Neary, FibroGirl, People First England, Making It Up.) […]

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