Four days. Seems like a lifetime. Or a life sentence really. The horror and disbelief kind of recedes, as family and friends sit around, drinking cups of tea, recalling the funniest, funniest of stories about LB. How he proudly announced last summer “I have a girlfriend for every occasion; camping and funerals”. Or in answer to Will’s recent question about what he did in the unit overnight, said cheerfully “not much.. a bit of wanking.”
That there seem to be no end of stories underlines how remarkable he was, and how his way of being and doing cut through the bullshit of everyday life.
The grief returns pretty sharpish though. Partly fuelled by the many reminders around our house (a major downside to cluttering). Photos, drawings, odd toys, Mother’s Day gifts, school reports, odd socks, years of ‘pupil of the week’ certificates stuck to the side of the fridge. And that’s without going in his bedroom. My mum and sisters collected his things from the unit on Friday morning. A terrible, terrible job. It broke my heart to see his well worn copy of the Yellow Pages at the top of one of the boxes they brought back. He’d been reading this less than a week ago. Septic tanks and heavy haulage.
We’re devastated. Completely devastated.
And enraged. Enraged he died in the bath in hospital. How could this happen? We never stopped listening and checking on him in the bath at home. How can you possibly find a young man with epilepsy at a learning disability/mental health acute hospital dead in the bath?
And, almost worse, how could we, as a family, seriously talk about how we hoped he’d had a massive heart attack? The alternative so painful, it’s unimaginable. But of course we know it isn’t really. A recent Mencap report (a few years after the ‘Death by Indifference’ report) found that there are 1200 avoidable deaths of learning disabled people a year in the NHS.
What sort of fucking care is ‘care’ for learning disabled people?
And then there is another layer of rage/despair. The wheels of the ‘official investigation’ by the NHS Foundation Trust means that he – a young man who never got to kiss a girl, go out on his own or do a tour of the Oxford Bus Company – will continue to be discussed/dismissed/pored over and minuted in jargon filled, appalling, process driven documents. Bureaucracy obliterating humanity in a mechanistic, always meaningless, way.
Why is it that the NHS/social services never voluntarily stick their hand up and say “We got this wrong. We are so, so sorry about what’s happened. But boy, we are seriously going to make sure it never happens again. And we’ll let you know/involve you in doing this”.
Part of me wants to say leave the dude alone now. Stop stamping over our beautiful boy who was loving, generous, without guile and enjoyed a cracking set of interests. He never had a chance with the web of under-funded, under-valued, non-support he experienced most of his life.
Then I think he deserved so much better. As do his peers, who were at the school Summer Ball on Friday night while he was in the mortuary. Things have to change.
So sorry for your loss. I can understand your rage. My father was seriously ill for 25 yrs until he died at 54. We lost count of the failures in care he experienced over the years in hospital, the cavalier & flippant attitudes of nursing & medical staff & even at the end when NHS24 could not get basic things right, as he lay dying at home.
What I will say is that after a year of pursuing a formal complaint, I realised that the only people that were paying the price was his family. The medics at least took our complaint seriously & we felt heard. The administrative managers fobbed us off with lies, half-truths & evasions. After yet another letter arriving; that sick feeling in the pit of the stomach as I realised no-one was taking responsibility, again; that feeling of rage that sticks in your throat & almost chokes you; I decided enough was enough. We needed to grieve. I destroyed the letters & did no more.
When I read things like your story, I sometimes wish I hadn’t stopped but deep down, I know the outcome would not have satisfied us and wouldn’t have changed the fact he was gone.
I hope that, whatever you decide, you benefit from your decision.
I’m sorry that your son & family have been so badly let down. I wish you peace & time to grieve.
Most of all, I’m sorry that these things will keep happening because individuals just will not take personal responsibility.
A few years ago my cousin lost her husband very suddenly at their home – he was 34 I think, or thereabouts, and they had a young daughter who was just two and they were trying for another. He had an asthma attack one Saturday morning, in bed, while my cousin was downstairs making breakfast. She came up and saw him not breathing and desperately tried theto revive him but to no avail. This all happened in front of their little girl.
A while later, at the post-mortem I think it was, my Mum said they were hoping it had been his heart, because then my cousin would know she hadn’t ‘failed’ to save him, but it was in fact asthma. I don’t think I knew he had asthma, so I’d no idea he could just die like that.
I was looking online for similar stories to LB’s as I’ve heard of others with learning disabilities and epilepsy dying in baths in ‘homes’ of various kinds. The stories that came up, however, were of people with epilepsy alone, some with spouses and children. One lady died taking her first bath alone, not having had a seizure for months (previously, the husband said that they had done everything together), and the husband told people not to leave someone with epilepsy alone in the bath, no matter what they say. But you can’t do that with an otherwise unimpaired adult.
I made a “memory box” (a pine chest decorated with something relevant) and every time I came across a card,letter,certificate I would put it in that box and knew where it was should I meet it again! And majority of the tee-shirts are now a rag rug put together during close times with friends.
My son suffered an aggressive mental breakdown after I was misdignosed and almost died…..my son was still trying to cope with life and the death of his father from cancer aged 47, a few years earlier! I believe my situation tipped the balance…that and the London Bombings (which occured close to the uni my son had attended!) So many questions but as ever more questions than answers. But we had a right to expect professional services from MH services, but sadly what I have discovered over past 8 years,since my son lost his life in hospital, has confirmed to me that he really didnt stand a chance! How sad is that! No SUI investigation was carried out until 6 YEARS later! I have the “whitewashed” SHA Report……the only reason I agreed to talk part was to highlight to systems “totally inadequate” response and use this to feed the battle.
With special thoughts of LB and family! You will find a voice!
R.I.P and you will be heard!
Thank you x
I am so very sorry for your loss, I have only just found your blog but felt moved to post to you and your family. As a mother of a son who has additional needs I have tears running down my face as I connect to your pain, the hopelessnessand and anger, I am so sorry this has happened.
LB sounds like he was a wonderful and amazing person. No words really work I know but I wanted to reach out to you.
Hi Sara, you and LB haven’t been far from my thoughts since last week. Like Mark, I find myself feeling waves of anger and sadness, bursting into tears on trains and buses. I can’t imagine what you are going through. LB was so special, so beautiful, and I’m so glad you recorded it on this blog. What happened to LB was another example of an unacceptable death in ‘care’ services. This system makes me so fucking angry. It ignores people’s cries for help, doesn’t listen, and then thunders in too late wresting people from homes and families and forcing them to surrender control over their lives. All in the name of protection, and then it can’t even keep them safe. I know my anger isn’t much use to you, but if you can think of anything at all that would be helpful that I could do, I’m just an email away. Sending love and hugs, Lucy xx
My special needs son had Epilepsy from age 12-15 and I would never leave him in the bath for even a second. I am so so sorry for your loss. This is totally unacceptable. Somebody higher up needs to do something about this and not sweep it under the carpet.
Dear Sara and family, I have no words that can console, I cannot take away your pain or sorrow. I am wondering how your family will get to the tomorrows. I will miss LB,s chuckle his familiar stance, I see his face as he gives that unigue sideways glance. There he,s stood with his hands in his pockets he shuffles up with a smile on his face ready to share his antedotes funny stroies with anyone he could. What a sense of humour! They say life a stage this is a show that should not be over..but the encores will go on for ever!I have like you so many fond memories I shall smile every time an Eddie Stobart lorry goes by. I hope like young Tom he is playing with many and sharing a joke about Bolo and the many Mighty Booshs characters he loved.
This should never have happened it,s so wrong on so many levels -I ask why? and its one to many.Ann
So sorry for you Sara – The system never takes responsibility if things go ‘wrong’ – I know from first hand experience…………
I’m so sorry for your loss and wanted to send you all our love and best wishes – Melissa, Steve and Joseph (another John Watson family). xxxx
I am so sorry for your loss. I have been reading your blog for a while because your experiences so mirror the awful situations my nephew (23 ) has been through including being passed from pillar to post and being sectioned . But I never thought this would end so tragically. There are no words really – except I am sure you will keep fighting until you get answers that will maybe stop this happening to anyone else.
‘Care’; ah yes. Like ‘help’, that is. If it isn’t doing what it says on the tin, it isn’t really really caring; or helping. And if it’s not doing what it says on the tin, it can be exceptionally damaging. No shit, Sherlock. And inquiries? Another opportunity for some platitude spouting spokesperson declaring their intention to ensure ‘it never happens again’. They said that of those who died in the Holocaust. They say that every time another baby is beaten to death or elderly person dies on a trolley in a hospital corridor and everyone missed the bleeding obvious. Never again? When does ‘never again’ begin, then?
so sorry to hear of your loss, my special girl will remember LB In her many photographs she always loves to look at, of school and the activities our beautiful children did. When we spoke after school on monday she said “sad”. love and hugs to you all carol x
Sara, I’m unutterably sorry to hear this terrible news. I can’t begin to imagine the grief and torment you and Richard must be going through. Sending love and solidarity. Harvey
I am very sorry for your loss. Speaking from someone who has lost a brother untimely, I understand your rage and sadness. Please remember that our loved ones will continue to live inside us. Hold on to the best memories, because they will outlast the sad ones.
My heart and soul go out to you and your family.I too have a son with severe epilepsy and never leave him for a minute and always never leave him in the bathroom as he seems to have a trigger reflex when even in the shower every time he gos into hospital I warn them and ask them to supervise him while in there but never do ….The care of these vunerable human beings seems to go unthought of in so many care settings..When parents give so much love and uttermost care to there children at home for you to loose your precious son due to someones bloody minded carelesness is heartbreaking and I know if I was in your shoes I would be raging ..Grief is bad enough to deal with but when a death could of been prevented its unreal ….I so hope you get real answers …My love and thoughts are with you all ..Valerie …Scotlland