Last Tuesday I worked all day and most of the evening on a statement for the Oxfordshire Family Support Network who were meeting with NHS England that week to discuss how NHS Trust providers, including Southern Health, had treated the families of children who died in their care.
It was a hard statement to write, very hard. But I pressed on because I wanted someone to hear our story very badly. After some tears and a lot of typing it was finished and I emailed it in. Sadly I had to include a warning that we were “under due legal process”, which meant that our statement would have to be anonymous.
Whether this was why my statement wasn’t used at the meeting, I don’t know. But I think it more likely that those parents who were present gave such vivid and compelling testimony that the meeting probably over-ran anyway. There are so many stories like mine and all of them deserve to be heard and heard again. I do not have the monopoly on sorrow.
But to have put so much into this statement and once again not to have been heard has triggered something inside me and in the last few days I’ve been thinking about how it has affected me to lose the ability to speak freely about our story, how much that has affected the support I’ve had and how this makes me feel.
Initially the first day of Nico’s inquest was scheduled for June 2013, but after receiving our statement the coroner decided to postpone the inquest until October 2013, so that he had more time to consider the facts. But on that first day there were so many witnesses and so much evidence that it could not fit into one day. So the coroner decided to adjourn the inquest for more statements and then continue in early 2014. As not all the statements he asked for were received (and I am choosing my words with great care) until early summer 2014, the coroner was not able to arrange for the second and third days of the inquest to take place until December this year. Three months from now.
One of the adverse effects which the drawn out inquest procedure has caused us is to make it impossible for me to make public exactly what happened, including details of Nico’s care, his death, the immediate aftermath and everything that has happened since which involves the inquest participants. Prior to the first date of the inquest I could have talked publicly and also to the press, but once the first day of the inquest had taken place we were then “in due legal process” which mean that from then on I have to be very careful about what I say and write so I cannot be accused of trying to influence the outcome of the inquest. That is simply something which I cannot risk at this stage.
But not being able to tell Nico’s story is increasingly like having my mouth taped up. Every day I read terrible stories on social media, in the press and on the news and I want to say “Yes! Me too” but I can’t. Sometimes I want to say “If you think that’s bad you should hear our story!”……but I can’t. It’s very hard.
You may be wondering at this point why I wasn’t a gushing stream of anger, finger waving and general truth telling in the gap between losing Nico and the first day of the inquest. The simple answer is that at that point I just wasn’t able to. Crushed by tearing grief, reeling from dealing with bewildering legal procedures I didn’t understand, trying to find my way through this awful maze without support or guidance, dealing with depression and trying to simply find a way to get from one day to another. Campaigning on top of that? That just wasn’t going to happen.
So I’m not able to write here what I want to. I’m not able to share with you the things I’d really like to say. So instead I’ll tell you a story. Let’s call it an analogy.
Once upon a time there was a young man who went to a really wonderful school, a beacon of excellence in the world of profound disability. One of the wonderful things that this wonderful school did for him was that they gave him a voice. So few of his throat and mouth muscles could be controlled by him that he just wasn’t able to turn the sounds he made into real words. This frustrated him terribly. He couldn’t tell people what he wanted, when and why and this made him so very sad.
But the school could see that if they worked hard with the young man (who was just a very little boy then) that they could help him to find a way of telling people everything that was in his head and just bursting to come out. So over the years (yes, it took years, not months) they worked with him tirelessly, trying out lots of different ways for him to be able to communicate. Because he wanted so very badly to have a voice the young man (then still a boy) didn’t care how hard the process was, or how long it took – because he loved finding a voice for the first time in his life. Eventually he learnt how to sign for “yes” and for “no” and also for “I don’t know”- which was a massive breakthrough as it meant for the first time he could answer questions and make his own clear choices. He also learnt how to use a “communication book”, where the teachers and care staff could use the symbols from his book to offer him choices around a theme (what type of drink do you want? Would you like to go out? Would you like to watch a film?). He could tell them his decision and then using more symbol cards in the book, make even more choices – until he had decided exactly what he wanted – and told them what it was.
His parents learnt the communication system too so that the young man (by then) could continue to let everyone know what he wanted at home. Happy young man who was able to tell everyone what he did and didn’t want! Smiling young man who made his own choices in life and told the world what they were!
But then the local authority decided that in order to save money Social Services would tell the young man’s parents he had to leave the wonderful school (by then he lived in the young adult unit) and go to live somewhere cheap. Social Services said the young man was incapable of making decisions about where he wanted to live. They sent him away to a shared house where the care staff were too few and too busy to use his communication book. The staff were too few and too busy to ask the young man what he wanted. They were too few and too busy to watch or listen to his replies or his requests. His communication book lived on a shelf in his room, thick with dust and unused. The young man grew very sad indeed. So sad that he finally asked his parents a very big question – “Can I leave here? Can I live somewhere else please?” But by then he had forgotten how to use his special book or make his signs for yes and no.
It was only when his parents saw deep in his eyes his terrible anguish, his longing to have a voice, to be listened to again and his awful silent isolation that they knew what they had to do. And so they asked the care staff “please can he come home until we find him another place to live?”
But the people with the power, the trust in charge of the care in the home, the local authority and social services didn’t want to listen to the parents. They didn’t think their voices were very important either.
So this is my question. How long is too long?
How long must you wait to be heard? Why are the people who most need to listen to you afraid to let you have a voice? How much more time must pass before we will be free to tell our story for everyone to hear?
The day after 11 December. It’s not too long now to wait – is it?