This is a guest blog post written by Rosie Tozer:

Why am I experiencing early symptoms of a panic attack as I read the LeDeR report and the commentary? (and many thanks to all the wonderful supportive people who have continued to mention Danny in their comments and their blogs. But for now a week after the inquest I’ll leave the critical analysis to others and write what is whirling in my head).

The answer can only because it is an all too real reliving of the horrors we have experienced through Danny’s time with Mencap, the 2.5 years trying to get a full inquiry and an inquest after the shock of his death and the delay and denial that entailed, feeling completely powerless.   Then dealing with appalling secret inquiry by the CQC, half completed though damning independent ‘review’, but not an adult safeguarding review as he’s already dead(?) never discussed by York Council, all the while behaving ourselves, being reasonable, dancing their dance, so we couldn’t be accused of being emotional parents who could not accept their beloved son had died, still naively hoping that if we told people what was happening and had happened something would change and there would be candour and accountability….

Then preparing for an inquest rather like preparing for an exam thinking of all the issues and questions our barrister could raise, wondering in the small hours what we had missed, then the inquest, tummy churning, asked first about Danny, not quite recognising we could not speak after that, we were wallflowers lining the hall never asked to dance again, listening to people we had hoped never to see again telling whole untruths (under oath) about there being no probs about staffing, or Mr & Mrs T, only minor concerns, they liked the PBS plan (though didn’t follow it), knew how the mat worked though it never had when he had a seizure, a rainbow of coloured lights, so it was turned down for when left alone awake in bed (2 hrs that morning) OK if only 2.5 staff in the house that morning – we were always told there had to be 4. Chillingly, vulnerable tenants were described as ‘no support needed’ at that time.

Then over a day’s worth of ‘evidence’ from 5 doctors and a nurse talking about epilepsy and cause of death, variations on a theme, sitting there listening to pontificating about aspects of seizures unlike Danny’s, then the council staff saying lots of unused hours, no worries, no scrutiny, all OK. And we knew lots about our son but no one asked us to join in or others in the room who were there at the back and knew why this or that …..

Then the judgment, barristers all poised for responding to obvious failings but nothing – ‘natural causes’ but keeping him safe might have been unrealistic/ impracticable/ not reliable (may not be exact wording but sorry can’t bear to look at the transcript) but would it not have given him a chance to live the rest of his life? Apparently not, let’s be honest, can’t expect too much, didn’t matter care plan/PBS not followed that morning as that didn’t relate to his epilepsy and we can only deal with one need at a time, his parents weren’t involved in the care plan but they’d seen it (no we hadn’t or only when quoted in independent inquiry report – we’d never have agreed as words too complicated for Danny, but they knew best) so all over, oh and mat was probably working so that’s good enough and thank you very much.

But by then we were being praised for our dignity and at ‘sincere condolences’ I had to leave the room but probably not quite soon enough. However, whatever we try the dance goes on behind closed doors and along corridors in ways we never understand and people like Danny and others are flung aside to keep things on track and the status quo ticking over.

Those who know Camille Saint-Saen’s Danse Macabre will recognise the hopeful oboe phrase after the climax of whirling music but which is silenced by the devil’s smooth violin solo – perhaps a personification of the struggle during our loved ones’ lives leading up to their earlier than ever deaths and then the sickening silence. And we all know about the devils’ many disguises …

Danny we’re so sorry we failed you even though wonderful George has ensured the evidence as such is exposed so now I’m composing blogs and so on in my head, still all of a whirl a bit like your dancing, sunny day, wanting to be outside with happy memories of our wonderful times together. But we mustn’t give up because that will make us ill and others will die, and have done, in just the same way already and will continue to do so unless people are called to account and cultures change. Although it seems to take a death for a brief invitation to the dance where we don’t know the steps or whether our card will be marked again.

But wasn’t this supposed to have been an Article 2 ‘right to life’ inquest?