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.