Where to start? How to make any sense of what’s happened this past week? I don’t know really.
Kicking off with the worst news experience happening imaginable, we’ve been knocked into a space that most (a lot of?) people/kids/families tend not to enter. LB, who was loved so deeply, experienced a consistently careless disregard of his life by others and ended up dying, aged 18. A complete and comprehensive health and social care fail. I don’t care what crapshite defence/excuses are presented in the destructive and damaging processes we have yet to face. It should not have happened.
The shite continues of course. As well as having to think about LB, his siblings, the funeral arrangements, ongoing CID investigations and an NHS internal investigation (don’t laugh), we’ve been forced to read guidelines around post-mortems involving epilepsy, chase up missed procedures and appoint a solicitor. Unimaginable horror. Confronting the gap between guidelines and practice. Phone conversations about missing brain tissue samples while journalists hover on the doorstep or lurk online.
Welcome to the world of death by indifference.
There is such a chasm between the raw, devastating grief visibly experienced by family, and those close to LB, and the careless, callousness of many ‘professionals’ we’ve come into contact with over the past few months/years. Family was really a dirty word once LB entered the unit in March. We had to ring up and ask his permission to visit him on a daily basis for over a 100 days. He never once said no. This is so heartbreaking, I want to get the relevant people by the scruff of the neck and say “What were you doing? Why would/how could you you do this?” LB lived happily with us for 18 years before ending up in state care because there was no other care. “What were you trying to achieve by carelessly labelling us as the problem?”
I want to know how the system, and the people operating within it, allowed and supported LB’s death. And our heartbreak.
I know he isn’t alone in experiencing such indifference. There is so much evidence about the mistreatment of learning disabled people by health and social care it’s appalling. (A mistreatment supported by the non-action of the government*). But right now, he is. For us.
*And don’t get me started on the cheap, nonsensical and patronising notion that “giving greater voice” to learning disabled people will, in any way, shape or form, reduce these horrific statistics.
mydaftlife 
I was advised to read this from my service manager. I work in social care, and have just taken up the responsibilty of working with people who are in transition. I am speechless that this has happened. I cannot even comprehend what you and your family are going through.
It’s just really bloody horrible. My thoughts are with you and your family.
A voice for disability is not enough unless it is supported by care and direct action. Alice, after reading this can you see a road for change
My sincere sympathy in time of loss and also my apologies for not being aware of the background that obviously accompanies this story. (My friend in the UK whose child shares similar rare medical condition as did mine, sent me to the page to read.) I am a Canadian and can speak directly to loss of loved one as well as ignorance towards persons with diversity and need to re-evaluate honour and respect of values through family-centred care practice. This is my family’s tragic page; my beautiful baby girl, the Samantha Martin story: http://www.youtube.com/watch?v=vmz_bujDPDk I believe that these young lives are here for great purpose and education of priorities in life.
I have read your blog here, back to front, over the last two days (and cried and cried for your family). I think I remember LB from when I volunteered at the school during my sixth form at Wheatley park. Though I was only there during lunchtimes and my time tended to be absorbed Matthew, Rosie and a small girl with startlingly bright eyes and dark hair who’s name I cannot remember now. What I do remember about LB is that he was smart and seemingly shy. To be honest from reading what you have written, I had him all wrong and I truly lost out by never getting to know your wonderful son. I have a seven month old daughter now and just couldn’t imagine the pain that you are going through. I hope one day to return to working in a similar environment and I hope against hope that I can make an impact of some kind. I will be sending bus postcards instead of Xmas cards this year. Your honor and bravery is an inspiration. Your blogs are amazing to read and definately think that a book as well written as this would sell out. I know that I am only a stranger but my love and thoughts are with you. Natalie.