Dear Southern Health

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Imagine my surprise when I received this letter from you yesterday morning. A letter from your head office, from a staff member I’ve never heard of before.

I’m happy that you recognise that it’s been a difficult time for us but I’m surprised that you don’t realise that in addition to the agony of losing our beloved son, so much of the difficult time we’ve been through has been caused by Southern Health!

You’re sorry you didn’t do more “to engage us in the investigation process”. Is that your way of saying you’re sorry you refused to reveal to us the circumstances under which our son had died when we asked you again and again? Are you sorry we had to wait 10 months to find out what had happened to Nico and then only because we were able to see a copy of your “Root Cause Analysis” in the legal papers sent to our solicitors by your legal team?

And now you want us to meet with you and we’re not sure why as you haven’t said.

The thing is, we’re a bit pressed for time at the moment with all the work we’re doing on our application for a Serious Case Review by NHS England into the circumstances surrounding Nico’s death. Then there’s the business of what we should do now that the coroner has declared our case to be an Article 2 (“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.”) so fitting in a meeting with you might be tricky just now.

I’m finding this all rather hard to get my head around. Aren’t you the same Southern Health who just spent thousands of pounds and hundreds of man-hours in order to make sure that you obliterated us at Nico’s inquest last month? Aren’t you the same Southern Health who last wrote to us in March 2013 (almost 2 years ago) to tell us that you considered this matter closed?

Thanks for the letter Ms Stevens and I’ll put it in our Southern Health file. You will be hearing from us again and it won’t be long now, I promise.

 

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A question of time

There is only one time which no-one disputes, which no-one corrects or argues with and that is 6.19am. That has been recorded by the ambulance service as the time the emergency call was made. 6.19am. A fixed point in time.

But that’s the only time that no-one disputes in this grubby business. Every other time is worth arguing about, lying about and trying to fog up so that no-one, least of all us, will ever know the truth.

There was a time when I would have thought that anyone involved in my son’s death would want to make it their business to be very clear about time. Once even the word “time” wasn’t loaded with pain, with double dealing and twisted logic. But not now, for the guilty clutch at straws regardless of their outcome and it often felt both in the lead up to the inquest and during those 3 days in court as if the only people Southern Health were not concerned about were us.

But let’s talk about time.

One member of staff on waking night care duty checks each of the four disabled young people in his care every 20 minutes, in order to fall within the guidelines of Nico’s care.

Four young people who may all need considerable attention at various points throughout the night, one of them with severe epilepsy and prone to night seizures and all of them incontinent.   When not checking every one of those young people every 20 minutes, that single waking night staff member must also clean and tidy the kitchen and living room, sort and iron the laundry and fill in paperwork. One thing not required though is to make a note of every time the young people are checked, so there’s no way to prove or disprove that everyone is seen every 20 minutes in order to keep them safe and well.

Or rather, there wasn’t until the night that Nico died. He died desperately calling out for help that never came and then lay there dead and unnoticed for over an hour, until it was far too late to save him.

The waking night staff made a statement which was presented as evidence at the inquest. According the statement, everyone was checked at 5.15am. Then at 5.35am the checking rounds began again. The first person checked needed a change of pad, but was left and onto the next person. They not only needed a pad change but their entire bedding and clothing needed changing as well and for one staff member alone, this took a while to do. Then onto the next person and they also needed a change. At 6.00pm it was Nico’s turn and he was found dead.   The waking care staff ran upstairs to wake the nurse and they returned to Nico to start chest compressions and mouth to mouth resuscitation.

At 6.30am the nurse called to say Nico was having trouble breathing and we drove  across country in that cold dawn, making a journey which normally took over an hour, in just 40 minutes. But while driving she rang us again at 7.07am to tell us to go straight to the John Radcliffe Hospital, as Nico was on his way there and if we hurried we might arrive at the same time as him. We changed course and drove to the hospital – still completely unaware that our son was dead. Nico had arrived there at 7.19am and was rushed to the emergency room for continuing CPR but when we arrived at the hospital at 7.32am, it was 2 minutes after the doctor asked the staff to cease CPR and declared Nico dead.

At the inquest the coroner questioned both the night staff very closely. He was puzzled as to what had happened between 6.00am and 6.19am. Why almost 20 minutes had passed between Nico being found and the ambulance being called. He was also unsure about the time of the initial check – was it at 5.15am? That couldn’t be proved as nothing was written down and seemingly it may have been closer to 5.00am. Over two days of intense questioning it became apparent that none of the times given were necessarily accurate. Both night staff claimed to have been the one who called the ambulance. The coroner asked how long it took to get from Nico’s room to the nurse’s room. In about 30 seconds, running.

The only fixed point which could not be disputed by neither the witnesses nor Southern Health’s barrister was the time the ambulance was called. All other times given by the care staff and suggested to them by Southern Health’s barrister (who was a very helpful man with the care staff, prompting them continually as they foraged around in their memories for the truth) moved and shifted back and forth over the days of the inquest.

By the time the coroner summed up at the end of the inquest what seemed most likely (but not definite as the care staff could not agree on the time line) is that Nico was checked at some point in the night which may have been 5.00am or may have been 5.15am. He was then checked again at some point which was probably 6.15am and not 6.00am as the witnesses and Southern Health’s barrister declared.   After attempting CPR on Nico, one of them (difficult to say who it was, as they both claimed under oath it was the other one) called the ambulance at 6.19am and the manager of the home at 6.20am. Why they waited another 10 minutes before calling us we will probably never know.

At the inquest both the doctor from John Radcliffe Hospital who was treating Nico’s early morning vomiting and the emergency room doctor who had attempted to resuscitate Nico when the ambulance brought him in, declared that had he be found sooner, there was every chance that he could have been saved.

In Nico’s care plan it declared he must be checked every 20 minutes. Nico vomited that morning between 5.15am and 5.30am. If he had been checked 20 minutes after his 5.15am check, Nico would be alive.

It’s just a question of time……………..

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Goodbye 2014 (and adios 2013 – did you think I had forgotten you?)

This isn’t the blog I intended to post – in fact I have another, completely different blog which is almost finished and ready to publish. But I couldn’t leave 2014 without writing about this very particular, this very changing year and I can’t really talk about 2014 without first looking back to 2013.

2013 was the year that I forgot how to swim. I found myself in a deep, deep pool and I couldn’t remember how to swim. I spent an exhausting year just treading water, waiting for someone to save me or to show me how to swim.

I passed the year 2013 in a state of glazed and hopeless anxiety. A couple of months into the year Southern Health wrote to tell me that they considered our case closed. If I had any further questions I could contact their PALS department (it was never explained to me what exactly that department did or what the acronym stood for, unless it wasn’t an acronym and they actually wanted to be pals, which on reflection seems highly unlikely).

I was in despair and I felt I was howling into the wind. No-one could hear me and no-one seemed even to care. Charlotte Sweeney (at this point my sole supporter) suggested I contact a woman called Beverly Dawkins from Mencap. I was embarrassed to do so and I felt quite sure that even if she was polite and kindly, she’d do nothing to help me. I had started to lose faith in what I thought was true. I was actually starting almost to believe the Southern Health version of what had happened and doubt was I was doing. But I emailed Beverley anyway.

I think I will remember the day and time she rang me back all of my life. It was a Friday morning. It was 13 June 2013 and it was, as the saying goes “a changing day”. She not only believed me, which was a massive thing after 9 months of being told I was deluded, but she actually wanted to give immediate and practical help.

Beverley found me a solicitor (Nancy Collins), who found me a barrister (Graeme Hall). We were quite literally days away from the mighty Southern Health steamroller squishing us flat at the inquest. My brand new legal team, who I met for the first time at the inquest, contacted the coroner to introduce themselves and to send in my new statement. The coroner postponed the inquest that day, giving him and them essential time in which to study the case. So instead of a brisk and crushing inquest in June 2013 at which I’d have no chance to speak, no witnesses would be called and no-one would question Southern Health’s version of Nico’s death, the inquest was postponed and re-scheduled for October 2013.

We went to the re-scheduled October inquest with no particular expectations. Probably just as well, if I’d known in advance what was coming I wouldn’t have wanted to go. To say that the coroner was “hostile” to us would be a massive understatement. He opened proceedings by making a statement in which he praised the work done by organisations like Southern Health who “do a job most people wouldn’t want to do, caring for people who are very difficult and demanding”. Southern Health looked smug. We looked horrified. It was by sheer doggedness that our barrister Graeme managed to wring an adjournment from that day, giving us the essential time we needed to build up our case and collect more evidence as it was clear by then that not only were Southern Health out to crush us, but the coroner was firmly situated in their corner.

As 2013 drew towards its close my long-term supporter, Charlotte Sweeney sent me an email, telling me that another young man had died in the care of Southern Health. I followed the link she sent me and read for the first time about Connor Sparrowhawk. My physical ticks, brought on by the trauma of losing Nico, returned while I was reading Sara Ryan’s blog. The rocking and face tapping returned together with their old friend the repeating phrase (talking to yourself using one constantly repeating statement). It was getting very difficult to get through the days and even harder to get through the nights.

The year closed ended with me working intensively to meet the coroner’s deadline, rather than wrapping presents. Getting more statements and searching for evidence and the more I found, the worse it made me feel. It was like peeling back the skin of an onion, only to find that under the perfect looking skin, everything was rotten and having reached the rotten parts, continued to unwrap the onion, going still deeper into its maggoty centre. We had a quiet and rather solemn Christmas that year.

2014 crept in without us really noticing. In February 2014 we received a letter from our legal team advising us that they didn’t think we’d have success with the case in a civil court and it was very doubtful that our solicitor’s senior partners would insure us for such a case. So basically, after the inquest, which they had already warned us not to expect a good result from, there was nothing more they could suggest that we did. The search for Nico’s justice had no viable future. I stopped answering the phone and hardly ever left the house.

We met the coroner’s deadline of 15 January for all new statements and evidence. Southern Health did not even attempt to meet the deadline and the coroner didn’t seem concerned as the deadline he had given them at the inquest slipped away without reprimand. It was June before they finally submitted some of the documents the coroner had asked them for and September before they finally submitted them all, which massively delayed the ongoing inquest.

Meanwhile slowly but surely the heartfelt outcry built over Connor Sparrowhawk’s death. People were filled with anger and disgust for what had happened to him and what was being done to his family. Their campaign for justice gathered pace, media interest and the wider public supporters began to be counted in their thousands. I could only watch anonymously from the side-lines. I read the words of anger, grief and sorrow. I also read the words of steadfast support and felt more isolated than ever before. Nico’s death didn’t matter to Southern Health, it certainly didn’t seem to matter to the coroner and apart from Charlotte and Beverley, who still fitted in a few emails as they dashed around the country, attempting to mend or replace our ailing systems, Nico’s death didn’t seem to matter to anyone at all. No-one ever asked me how I was or what was happening in our case. I had fallen into a bottomless pool and I no-one was coming to show me how to swim.

By June 2014 I felt compelled to write to Gail Hanrahan of Oxfordshire Family Support Network, but also a close friend and staunch supporter of Sara Ryan, Connor’s mother. I poured out our story in an impassioned email roughly the length of War and Peace. I don’t know if I even expected a reply or what that reply would be. I honestly don’t know what I was hoping for.

In that email I described myself as “dust in the corner”. We were of so little importance that we were not even irritants to Southern Health.   We were nothing and no-one cared what had happened to us. The page had turned and the world had moved on. We were not just forgotten; as no-one knew about us, so there was nothing to forget. No media attention and no-one interested in looking twice at what had happened. We were the parents of someone who had died as quietly as a little candle snuffing out as far as the wider world was concerned.

Gail forwarded my email to Sara Ryan. Both of them wrote back to me that very day. Both of them immediately set about writing blogs about my story. They published their blogs within days and the comments and replies flooded in. Suddenly I was no longer just a minor irritant to Southern Health, I was not deluded, I was not helpless, and I was not “dust in the corner”. As I read the blogs and comments it was as if blinkers were being slowly peeled away from my eyes. I wasn’t alone and a great gasp of air shot into my lungs.

On 7 June 2014 I published my first Tweet, as suggested by Sara Ryan and George Julian which included using the title “justice for”. The hardest thing was trying to speak in coherent, grammatical sentences while still using only 140 characters! Sara Ryan put me in touch with a really lovely, caring man called John Williams, who created my blog. Just 2 weeks after that initial email to Gail Hanrahan, JusticefoNico existed with a twitter account and a blog. We had a voice and could tell our story.

The more I wrote the more people cared. I not only remembered how to swim but swam right across the pool to the computer, where I sat down and started writing. I wrote about Nico and I wrote about how we felt now. I wrote about the love we had for our golden boy and why he was so precious to us.  I wrote about what had happened to us and what was still happening. The more I wrote the more people read it. People were outraged on my behalf and I felt empowered and connected with a whole world of fighters for justice, truth, transparency, good quality care and a better way for us all. In 6 months I had almost 1,000 followers on Twitter and I was able to write about the landmarks, the letters, the meetings and the emails that marked our on-going journey throughout the rest of 2014, going forwards towards our inquest.

I was able to write about our PIR (Pre Inquest Review) meeting at the end of July 2014. It was a conference call at which we didn’t speak, but just listened as others spoke on our behalf. At the end of the meeting the coroner gave us the dates of 10 and 11 December 2014 as the final two days of our inquest. I was able to write about the coroner saying he hadn’t had time to read the statements and documents provided by us or by Southern Health prior to the meeting and several of the files he requested from them were still missing anyway. I wrote about the fact that after the PIR we were in despair after the coroner allowed Southern Health to object to our only two witnesses.

In September 2014 I wrote about Jan Sunman contacting me to ask if I would take part in a meeting with NHS England who were reviewing the way that Southern Health treated families. Taking part in this meeting proved extremely important and in the long term may prove to have more lasting impact than the inquest.

In November 2014 I wrote about Jan Sunman setting up a meeting with Verita, who are also investigating deaths of people in the care of Southern Health. I was able to write afterwards about how deeply disturbing I found both of this and the NHS England meetings. How they forced me to examine issues which were almost unbearably painful and talk about them, out loud, to people I didn’t know, for the first time.

Later in November I wrote about going to London to have a meeting with our legal team at which they could “manage our expectations”. I wrote about how concerned I was about what to wear until I realised that placing all my concerns around my wardrobe was a coping mechanism for dealing with the stress I felt about the meeting. I wrote about what it felt to be standing in “the last chance saloon” as our team explained how unlikely it was that we’d have an outcome that would be anything but disappointing for us.

And then, in December 2014, it was the inquest. Against all the odds and our own expectations, almost everything I’d hoped for came to pass. But how we also found out that “victory” was just an illusion and the only thing that really mattered to us was our tearing sorrow and once again, the empty chair at the Christmas table. But at least for the first time, I could write about this.

So 2014 has turned out to be the year I started writing and the year that took us closer to justice. The year that the media heard our story and for the first time cared enough to write and talk about us. I was helped to find a voice and once I found it, 2014 was the year when I told the world about Nico and what had been done to him and to us. Now I’m no longer “in due legal process” I can say whatever I want to say and you can be quite sure that I’m going to keep on doing just that!

2014 became “words year”. Words of truth, words of power and words of compassion. 2015 will see us move to the next stage in our quest for justice and this will mean more words. No-one can stop me now, no-one can gag me or tell me what I can and cannot say. Southern Health tried very hard to silence me and they nearly succeeded. But near success is just another word for failure.

Again, again and again, the story of Nico, of his love, his family, our battles, his care, his suffering and our fight for justice will be told.

2014 was the year of words. 2015 will be the year that many more people read many more of these words.

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