Read all about it.

Six months after Nico died I was in the car when I heard the Emeli Sandé song “Read all about it” on the radio.   I had heard this song a hundred times as background music without ever really listening to the words, but now I found myself really listening for the first time.

“It’s about time we got some airplay of our version of events. There’s no need to be afraid, I will sing with you my friend – come on, come on. I wanna sing, I wanna shout I wanna scream ’til the words dry out, so put it in all of the papers, I’m not afraid, they can read all about it, read all about it.”

Without warning I began to weep uncontrollably and cry out, rocking and calling out Nico’s name. At this point I wasn’t able to control my terrible weeping jags which were happening several times a day. I was going through the awful pretence of normal life while in reality I was just staggering on from one horrendous emotional hole to the next.

But this was different. I became absolutely distraught because I realised that no-one was listening to “our version of events” and the feeling that we had no voice made my agony so much more acute. I had a great need to tell the world about what had been done to us and to my boy but I didn’t know who to tell or how to begin to tell it to them. There was a vast, empty, aching void that seemed to stretch out all around me like a great desert. Without support and robbed by Southern Health of our right even to be so angry, we swayed and fell and had to stumble back to our feet again because nobody was coming to help or comfort us.

If no-one knows, no-one cares. You have to tell people about the great wrong which has been done to you for them to be sympathetic, or even empathic. To have listeners you must be able to tell them your story. The opportunity to say your feelings out loud and know others are hearing you, brings its own sense of worth and value. When you know your words are listened to you feel your voice has power. When people start agreeing with you then you have the beginning of validation. With validation comes healing.

In February 2013, almost 6 months after Nico’s death we received a letter from Katrina Percy, the CEO of Southern Health. This was the only letter we have ever received from her. It came in answer to a letter I’d written to Southern Health two months before. I wrote because although I didn’t know what ought to be happening, I felt sure that something ought to be happening; some investigation, some letter to us – just something. I needed to know they remembered us and to know if they remembered Nico. I needed to know if they had carried out an internal investigation at the very least. I just needed them to be writing to me with some words so that I knew they were even aware that Nico had died and that they cared.

She wrote: “Although a Root Cause Analysis had been completed, you weren’t informed that this had taken place. You weren’t informed as it was thought this would be distressing for you, but had you been provided with this information, it would have helped you to understand that the Trust was looking to learn from any issues surrounding your son’s death. I am sorry that we did not keep you informed and appreciate that this must have caused you additional distress.”

And that was the only paragraph specifically mentioning that our son had died in the entire 4 page letter. In June 2014 we finally saw this “Root Cause Analysis”. It was in one of the vast blue backed tomes, the so called “bundles” of legal papers sent by Southern Health to our solicitors. So it was actually June 2014 before we finally knew Southern Health’s version of what happened to Nico and why it would have been too upsetting for them to have told us at the time; why we had to spend 22 months without knowing how our beautiful, adored son had died. And yes, they were right about one thing. They did cause us additional distress.

“You’ve got a heart as loud as lions so why let your voice be tamed? Maybe we’re a little different, there’s no need to be ashamed. You’ve got the light to fight the shadows so stop hiding it away, come on, come on. I wanna sing, I wanna shout, I wanna scream ’til the words dry out. So put it in all of the papers I’m not afraid. They can read all about it, read all about it.” 

By denying us our pain, our sorrow, our anger and our voice, Southern Health had taken Nico away from us twice. You may say, that’s ridiculous – melodramatic even, but when what you say is just brushed aside and paragraphs like “I hope you feel that I have adequately answered your concerns.” are all you get in reply, you feel as if nothing you do or say is considered important. Your voice and what you have to say are just silly, petty and forgettable.

The letter finishes by saying “However, if there are any points requiring clarification or any new points have arisen which you consider have not been addressed by the Trust, please ask for a further response from the complaints officer”. We could feel an underlying thread throughout the whole letter suggesting it was us who misunderstood things, almost willfully. How annoying of us, how selfish. How lucky we are that Southern Health has treated us so wonderfully and really, why aren’t we just more grateful?

Last night I heard the same song on the radio again, for the first time since the that time in the car when listening to it made me crumble and howl. This time it felt very different. I sang along. I sang the words out loud and I wanted to thank Emeli Sandé for writing better words with a better tune than I could have and I sang the sentiment of the song in my heart. Because yesterday the BBC announced that the Oxfordshire Clinical Commissioning Group would be conducting an independent investigation into Nico’s death. The announcement was on the television, on the radio, on-line and in the papers.

“Making sure that we’re remembered because we all matter too. If the truth has been forbidden then we’re breaking all the rules” 

So what can I say? The investigation will be far reaching and will be shining a light into a lot of dark corners that Southern Health would prefer no-one looked into and our local Social Services will not escape either. Taking away my voice has only given me time and space to learn to speak louder. Denying our truth has only given us time to come back stronger and with more proof. “I wanna sing, I wanna shout, I wanna scream ’til the words dry out. So put it in all of the papers I’m not afraid. They can read all about it, read all about it.”

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Changing Trains

It’s been a long time now. If someone had told me how long it would be at the beginning I don’t think I would have believed them and I wouldn’t have wanted it to be true. But in some ways it also feels as if it’s been no time at all. If someone walked into my house right now and told me we were collecting Nico from school today and going off on holiday I’d probably cry with relief that this has all just been a bad dream that is now over, but strange to say, I wouldn’t be amazed. Because I still feel so close to when we were just a normal, happy family with Nico at the centre. This still feels so real I could almost touch it. It’s almost as if all the terrible experiences we’ve been through in the last two years run parallel to the real world and for some reason I’ve been forced to live in this parallel world. I know that makes no sense and I dread the day I accept that this is not a parallel world – this is going to be our now and forever new normal world.

But yesterday I changed trains. Today I realised that there’s a real possibility that in changing trains I may in time go forward to finding a place of peace and acceptance – a place where I can exist in this new world, this new normal. A place where I can love Nico and think of him with love, but there won’t be pain, bitterness and anger. Getting ready for the inquest and fighting through the inquest was drawn out over a period of almost 18 months from the first date we were given in June 2013 to the final day of the inquest in December 2014 and that has most definitely taken its toll. I only realised yesterday just what a toll it has been. Anyone who says that an inquest of our type is not combative, is not confrontational, has clearly never experienced it.   It is awful and draining and all consuming. You are riding on a run-away train and where it takes you to is quite terrifying, but you are equally terrified by the thought of getting off.

We were told at an early stage that the inquest was no more than a side-show, no matter now intense it would feel, and that the real work would only begin after the inquest was finished. A few weeks after the inquest ended we applied to NHS England for an investigation. Then we waited. It was rather like when your train stops and someone announces that you’ll be delayed but they don’t know how long it will be for? That was us. Sitting and waiting and waiting some more. Waiting for someone to tell us that the train would start again and where it would take us.

Then, a couple of weeks ago we heard. We were not to have a Serious Case Review but we were instead to have a full Independent Investigation. Partly because of the huge scope and complexity of Nico’s case a Serious Case Review would not have been able to look into everything we raised, it wouldn’t have had a sufficiently wide remit. But an Independent Investigation would cover a lot more and that is what we wanted and asked for.

I dreaded the first meeting with NHS England and the Clinical Commissioning Group. Yesterday I entered the room to meet with them with the same cold and horrid panic the inquest process had created in me. But when I left that room and those people I knew without doubt that I had changed trains. For someone like me, with what we have endured at the hands of Southern Health, their legal team and the coroner’s court, just simply to be met by people who plainly care. People who are as outraged as we are and just as determined to bring these people to book, was an epiphany. To be treated kindly, courteously, to be listened to and believed meant more to me than I can easily put here into words.

Within the next three weeks we will receive our first document which will detail the scope of the investigation. Within a few weeks after that we will be going through the candidates who wish to be considered as investigator on this investigation. We will choose who we prefer, we will choose together and we will choose who we all think will do the best possible job. Then we press go. Then the investigation begins and we have been told to expect it to last at least 6 months and possibly as long as a year. That doesn’t matter to me right now. What matters is that it’s a far reaching, thorough investigation.

I already think about the faces of those people who are going to receive letters letting them know that the investigator wants to interview them. I am already thinking about the papers that will be demanded and the explanations sought out with a certain degree of tough mindedness. Did they really think they had just got away with it all?

Yes, I have changed trains and the new train that I ride on is a different train. It is taking a different route and I feel very different to be riding on it.

This train only has one destination. It is bound for justice. https://www.youtube.com/watch?v=RTDNW9BfzfY