The day before Dr M’s GMC tribunal starts. Weeks of dread, horror and such deep sadness. A chunk of today listening to a Keane playlist. And re-reading the various tribunal documentation. (Regular readers will know that Keane were LB’s favourite band for about two years before he moved on to drum and base.) I thought about how six years or so ago now he would probably have been lazing out in the garden if it was sunny, listening to Walnut Tree and the like. Over and over and over again. And then again.
My mind wandered into an unusual space earlier; an imagining space. Imagining LB had received good care at the unit. Imagining that he had been treated with care, respect and professionalism…
Rich and I spent several hours in A&E two weeks ago after I had a couple of dodgy breathing episodes over a few days. The care, attention and kindness demonstrated by everyone we came across in the John Radcliffe Emergency Department was exemplary. Around 2pm on the Sunday, watching the men’s Wimbledon final in the waiting room and waiting for various test results, I said to Rich
Not being funny but I feel an unusually peaceful sense of wellbeing right now…
It was beyond comforting to be looked after by dedicated professionals after four years of brutal treatment. Early evening the consultant said it was anxiety, my GP would be in touch to discuss and we could go home. I’d said hours earlier that I was under immense stress. Information that was parked by staff who spent the day carefully testing for heart related and other nasties regardless.
This was, arguably an anti ‘diagnostic overshadowing’ experience. I don’t like this term but it’s the idea that health/social care bods can’t see beyond the label of learning disability or autism to offer effective care. Rich last week said it’s just neglect really and my A&E experience supports that. Even with an obvious explanation, staff did a thorough investigation.
Some of the detail that may unfold over the next two weeks of the hearing will be bewildering or shocking to many people, health professionals and others. Or it should be. Perhaps some medics will switch off when they hear the learning disability label. Thinking explicitly or implicitly that LB’s death wasn’t ‘premature’. Certain people die early… weak stock and all that.
There is no reason under the stars, planets and to the moon and back that LB and I received such different NHS care. I was treated with respect, care and a deep level of professionalism in a space that people typically pass through in a few hours. I pitched up out of the blue. LB, with a ‘footprint’ (I dunno what else to call it) that should have screamed serious attention and care is needed, was treated with contempt on admittance to the unit, restrained, sectioned and then pretty much ignored for 107 days until he died.
I type these words with a jangling, raging, fucking maelstrom of incredulity…
George Julian will attend the two week Manchester based GMC hearing daily and live-tweet the proceedings. There has been a remarkable response to a funding call to cover her expenses to do this; recognition that making these processes transparent is a public service. It ain’t an easy gig to live tweet anything, let alone complex legal cases and the LB’s inquest twitter feed she produced remains a remarkable example of live and open justice.
For us, as a family, we could not be more appreciative that George is prepared to take on this task with a professionalism too often lacking. To know that we don’t need to ‘police’ this tribunal; to be confident that the process will unfold transparently with commentary from a diverse number of people. This is simply priceless.
Thoughts with you once again during this awful time of further seeking justice and making people account for their neglect. Be careful with your own health and if there is somewhere to donate for George could you let me know please
You’ve said it how it exactly how it is and so accurately described the massive chasm in healthcare approach to those of us without a label and those who go through most of some of their life with the horrible monicker of Service User, Client or whatever. It seems to create a fog in the heads of the medical profession. Useless human beings who only deserve second best. It’s unofficial Eugenics by those who regard an intellectual disability as a waste of resources. What other reason is there to explain what’s going on in the 21st century and historically has always gone on.
My prayers and thoughts are with you at this heartbreaking time. May justice be served for your son, and the wider population of marginalised, discriminated, people with learning disability/autism somehow benefit from this senseless tragedy. With love.
Your courage and strength are astounding – we can only hope that justice prevails and the system genuinely changes. Every small thing we do to bring that change about is worth it – although for the life of me I can find no justification for why attitudes and indifference persist.
Keep up the fight LB and every single other son, daughter, brother, sister is worth it.
Love and respect.
Dear Sarah , I hope you get justice for LB , truly heartbreaking. I have followed your story and will continue to do so. Wishing you and your family much love and strength . Wendy Neil .
I am following your harrowing ordeal with great interest and wish you well in coping over the next few weeks. Please can you explain a little more about whether the Psychiatrist under investigation was LB’s Responsible Clinician at the time? Were any other doctors involved in LB’s care? And which nurses from the unit being investigated? I’m sure you have explained before but it would be helpful to understand how this point was finally reached.
Thank you and best wishes, Nicola
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