It’s beginning to look a lot like………

If you’re ever offered an inquest 2 weeks before Christmas Day – say no.

As we walked from the train to the coroner’s court through the beautiful Christmas streets decked out with lights and with jolly Christmas songs and carols playing in every shop and on every corner, it only served to make us feel more desolate and isolated from the world around us.

I would like to apologise with all sincerity for not writing anything in the last two weeks. So many people have sent me wonderful messages of support and genuine concern in the days leading up to Nico’s inquest and I’ve hardly answered a single one of them or even acknowledged that I’m still here following the inquest.

Heart-warming tweets and some lovely blogs have been written in solidarity with us and I’ve not acknowledged a single one. This makes me feel terribly guilty. So I want to use this blog to express my absolute and total gratitude to everyone for their messages in the days before the inquest, during the two days and for all the days after. Your caring support means the world to me.

One of the loveliest people I’ve met on Twitter wrote to me two days before the inquest and asked me if I had a “strategy in place for how I was going to deal with my emotions after”. At the time I presumed she meant a coping strategy for how I would deal with a disappointing decision from the coroner, which after two years of fighting for an inquest would have been devastating. We had already been to London for a meeting with our legal team who talked to us about “managing our expectations”, which apparently is legal speak for “we don’t think we’re going to get a good result and you need to start preparing yourself for that eventuality now”.

The one thing no-one had talked to me about was how to prepare myself to deal with a “good” verdict. The verdict we had hoped and prayed for.

When is a victory not a victory? When it involves you listening to the awful, miniscule medical details of exactly how your son died and at which various points he could have been saved. When it involves listening to people you trusted lie – and lie quite badly, anything to pass the blame onto someone else. Desperate lies, guilty lies, but ultimately very horribly sad lies which probably have cost them dear as they now have to live with the memory of our hot, devastated eyes upon them while they lied.

Southern Health had come up with a most interesting line of attack, in which all their witnesses had been carefully coached. According to them, their barrister and all their witnesses, Nico made himself sick as a form of attention seeking. Or he did it to get out of doing things he didn’t want to do, so it was his fault really.

The one thing that Nico, my loving little Nico who was so fearless in the face of pain, dreaded and feared with all his heart, was begin sick and choking. Drowning in his own vomit. It simply terrified him to be sick, particularly if no-one was with him and it was early in the still, dark morning. We made sure that he was never alone when he was sick, that he never had to be terrified of dying alone, screaming for help that never came. We killed that fear for him, spat in its face and trampled on it. He knew that we would be there for him every minute through the night and in the early morning when he would be sick – we would be there to save him.

The coroner ruled that Nico could have been saved if the care staff had adhered to their own care guidelines of checking him every 20 minutes. He ruled that it was difficult to say exactly how long Nico was left that morning between checks as the evidence of the night staff was contradictory (each blamed the other and each said claimed the other had carried out certain key acts that morning) but he estimated it to have been at least 45 minutes and probably an hour or longer. He ruled that had they checked Nico when they should have he probably would be alive.

The coroner granted our inquest Article 2 status, which is usual when “The death occurred in circumstances the continuance or possible recurrence of which is prejudicial to the health or safety of the public or any section of the public.”

For several days after the inquest I felt I couldn’t move or breathe. Now we are moving around in a reasonably pretense of normal life. My halls are decked and there are carefully wrapped presents under my highly decorated tree. Tomorrow I host Christmas Day for my extended family. Tomorrow we will sing the songs, play the games and eat the food in time honoured tradition. But it will be a struggle and I will be so glad when the day is over.

Nico will be with us of course. His glass fronted cupboard in has been decorated with all his favorite Christmas sparkles and he has a small candle too. The candle will burn all day tomorrow and into the night too. He will not be alone in the dark.

Merry Christmas everybody………………………………

P.S. In some future blog I’ll place a link to some of the television coverage of our inquest, but for now I’d like to share with you the rather wonderful Phil Gayle (BBC Oxford) radio show as perhaps this says all there is to say at the moment. Here’s the link:

So that you don’t have to listen to the whole show, here’s a guide to the bits we’re in (obviously we’re also featured on each hourly news section).

  • 1.05 hours into the programme for edited version of interview with myself and husband and also interview with Beverley Dawkins
  • 2.07 hours into the programme Phil Gayle interviews Phil Aubrey Harris from Southern Health on the coroner’s verdict and how they have treated us.

Standing on the mountain

I am the daughter of the generation who stood alone against the might of tyranny. I was brought up to fight for right, whatever the cost and however long it took.

When my second child was born with profound disabilities it never occurred to me to do anything other than fight, fight and fight again for him to have the best and happiest life possible.

Nico was special to all who knew him and so loved I can hardly put it into words. A shining, lively boy – he loved life, he loved people and he was so determined to achieve the best that he could do in all things he did. For him impossibility was just a problem that he hadn’t solved yet, or that we hadn’t helped him to solve. He wasn’t a poorly little boy needing constant attention, he was the boy you could rely on to get the party started and keep the party going when others were starting to flag.

We were told that he would probably have a shorter than average life and might possibly die in his 40s or 50s. As this is a life span of many non-disabled people we could live with that. So long as he wasn’t in pain (and he wasn’t) we wanted him to have a life filled with everything he wanted for himself, so that when it ended we could put our hands on our hearts and say “he had a good life”.

But instead, he died at 23. A needless death, a preventable death, a terrifying death. A death that never had to be. It wouldn’t even have taken very much to save him from that ghastly end. All it needed was for Social Services and the NHS Trust management to listen to us and to act upon our words. Promises broken are not promises at all. Kindly don’t patronise us, we prefer to be told the truth and then go forward together with us to create a better present and a better future.

No-one would choose the path lightly that we have taken in the last 2 years. To take on the might of a NHS Trust in order to prove their culpability in your child’s death is something that no-one should ever have to do, that’s very clear. But more than that – it’s honestly not something that you would ever want to do. How hard it is, how it crushes your spirit and destroys so much of what you thought was right and true, is something that if you thought you could avoid, you would.

We have not done what we have done for gain, for money, for attention, for notoriety and most especially not out of a need for vengeance.   Every layer that we have been able to peel back has only revealed a fresh concern and much of what we know now is frankly something that we wish we didn’t ever have to know. But we do know now and when you do, you cannot turn your face to the wall and pretend that all is well.

Next week, after waiting more than two years, the last two days of the inquest into Nico’s death will take place. In those two years we have witnessed the slow, so slow, movements of our legal system. We do not blame anyone for the delay as that would be useless. The coroner’s court can only move at the speed that it is able to; they ask for new documents and then wait for them to arrive. They read them through and ask again for more. Then they ask for new statements from a different person and from the time they ask for it, to that new statement being ready for inclusion can take 6 months or more.   Very quickly, those six months becomes a year and one year becomes two.

I do not think that I occupy the moral high ground. I am as flawed a human being as everyone else. Taking a stand, speaking up against that which you think is wrong, seeing that if you do nothing, then nothing will change – standing up on the mountain in the howling wind; this is a cold and lonely place and not a place that brings you comfort. If I had one wish, one thing that I could change about the last two years it would be simply this; to have my boy back, safe in my arms again.

But that cannot be. Nothing I do now, or do not do. Northing I say now or do not say, will bring him back. No legal verdict will change what has happened to us or calm our grief. But it might prevent it happening again and that is why we fight on.

I am the daughter of the generation who stood alone against the might of tyranny. I am the mother of a much loved child. Hear me all tyrants, all oppressors, hear my voice – a very small voice in the world but I do not fear you. Whatever will come in the next week I am ready for it.

I’ve had a long, long time to get ready.