I’ve asked a lot of different people and everyone gives me a slightly different answer. Is it pronounced Mazaar or Mazzer? I’ve decided that I’m going to settle on Mazar -as in rhyming with far. At least for the length of this blog.
In October I received a phone call from someone at the BBC and they asked me if I could comment on the upcoming Mazars report into deaths in the care of Southern Health. I was polite but explained I couldn’t comment because my son Nico had died in a supported living home which although in the process of being taken over by Southern Health, did not actually come under their banner until after his death.
Then a few weeks later I received another, very similar phone call. I told them the same thing again. I wanted to be very clear about this. With Nico’s independent investigation coming up I wanted to make sure that we didn’t somehow get joined onto something that wasn’t anything to do with us. Plus I didn’t really know very much at all about the Mazars report.
A couple of weeks ago I became aware of a lot of talk on Twitter about how Southern Health was attempting to delay the publication of the Mazars report. They were questioning the way it had been put together and basically trying to kick it into the long grass where they hoped it might lie, forgotten. It was then that I thought for the first time that there must be a lot in it that Southern Health feared for them to do that.
Then on Wednesday 9 December everything changed. The Mazars report was leaked to the BBC who ran with the leaked report as the headline piece on the main news. The immediate effect on my family I’ve already written about in other blogs this month, so I won’t say it all over again here.
But I’ve since thought how slender is the difference between what actually happened to us and what so nearly could have happened. What could have been our story. If we hadn’t been told to ring Beverley Dawkins at Mencap in June 2013 we would have been sitting in front of the TV that night as a family who received no support following Nico’s death. We would have been a family who were steamrollered by Southern Health at a quickie inquest and sent on our way with a verdict of natural causes. We would have spent 2 anguished years before we happened to be sitting down in front of the TV on the night of 9 December.
That would have been the moment we found out that a population the size of our village had died in the care of Southern Health? I would have been physically sick.
From Wednesday night on my life has been in turmoil. My house isn’t decked. Few presents bought and none are wrapped. My normal life as I knew it has gone on hold. I am ill and yet I’m too busy to be ill. It’s like taking a seat on a crazy carousel that I am scared to stay on and scared to get off.
Since Wednesday I’ve been blogging about the Mazars report a lot – mainly because I thought that was the only thing I could do. I could throw my small voice into the tumult. But within a few days the BBC were talking to me. They wanted interviews. I didn’t really understand why they wanted interviews with me, when Nico wasn’t included in the Mazars report.
A week after the report was leaked to the BBC, Michael Buchanan, principal journalist of the BBC investigation into the report, spent the day at my house. He interviewed me over several hours. They’ve only shown a minute so far of the interview, but I’m guessing that some of the rest may surface at some point.
Towards the end of his time with me he asked me a very curious question. He asked me if I had seen the report. I told him I hadn’t – of course I hadn’t, when would I have seen it? He told me that he was going to show me a section of the report and then he was going to ask me who it was about. He then said to me “and it’s very important that you answer truthfully”. I just looked at him. Why on earth would I lie? I really didn’t understand what was going on.
Then he put his iPad down on the table in front of me and said “Read this and tell me who this section of the report is about”. And there it was.
A whole section about Nico. A whole section about how Katrina Percy had written to us to tell us that they’d held an in-house check into why Nico had died but they had decided not to tell us they’d done so, or what the findings were because they had decided that we would we’d find knowing it too upsetting. Then some stuff about how that had made us feel. Not Nico’s or our names of course – but you don’t need names when you’re as familiar with the words you’re reading as you are when reading your own address.
I was gobsmacked and that’s how I found out the Mazars report is not only looking at the hundreds of needless and preventable deaths in Southern Health’s care, but also the casual, cavalier and utterly repulsive way they have gone about investigating those deaths. If indeed, they have investigated at all.
Thursday night it was me on the TV. I chose that outfit with care so they’d be somewhere to put the microphone. Pity about the rest of me, but in my defence, it was all pretty horrible. It was no flippant and polished talk show.
I found out at 10.30pm last night that I wasn’t being picked up and taken to London to appear on BBC Breakfast time this morning, which meant I had time to fit in a live radio interview with Howard Bentham on BBC Radio Oxford. Considering it was still dark and for me very early, I was remarkably feisty. This was put together by the other driver of this investigation, the rather wonderful Serena Martin, who has stuck like a bloodhound with glue on his nose to both mine and Sara Ryan’s stories since the get-go. Serena – I like you.
I wasn’t too upset to miss my turn on the BBC early morning red sofa. The main reason I couldn’t do it was that they couldn’t fit it around a meeting I had already arranged.
This morning I had an early meeting with (top woman) Jan Sunman (Oxfordshire Family support network) and one of the commissioners of the Mazars Report and some of the NHS England team based at Jubilee House, Oxford. Jan and I did rather put the others on the spot, but to give them their due – if we had the questions, they had the answers. It’s has been very hard to me to suddenly enter this world and yes, I spent quite a lot of time saying “what does that word mean?” and “what do you mean by that?”, but the difference is, I’m no longer embarrassed to ask this. It’s how you find out, after all.
At the end of this meeting I stayed on in Jubilee House. Most of the others, including Jan Sunman, also stayed on and got stuck in with the “Transforming Care” meeting that was taking place there – which I bet was some pretty hot and strong stuff between the Mazars report and the new round of ghastly, almost joke-like cuts to social care announced by Oxfordshire County Council today. If people like Jan and her work partner Gail Hanrahan are anything to go by though, there will be some pretty good and real transformations to care taking place and the people behind the cuts will find out they have taken on some tigers of disability rights.
Mild mannered as Jan may be and elegantly sassy as Gail may be, if Katrina Percy was put in the ring with them, my money would so be on Ms Percy to go down like a sack in the third. Or maybe the board of directors would just throw in the towel.
Me, I went into a “Making Families Count” steering group meeting. I had a lot to say. I know I was loud, I know I was passionate and opinionated. Looking at the support given to families after an unexpected death by Southern Health has galvanised not only me but the whole team in a most remarkable way. We have a lot of work scheduled for next year and never has it seemed more relevant or more important to get the work done. Training NHS Trusts on what “good” looks like, on transparency, candour and best practice in supporting families after an unexpected death. Unsurprisingly, Southern Health has not yet signed up for one of our training days.
I later found out that while we were having our meeting there had been a demonstration going on outside, with people protesting about the deaths of so many of Oxfordshire’s precious young people in the “care” of Southern Health. I don’t know much about it because by the time I left the building it had ended. But the irony wasn’t lost on me that while outside people were shouting about the deaths and the need for change, inside the building exactly the same thing was going on at the same time.
So that is my Mazars – so far. And perhaps it will be the whole of my Mazars experience. My time in the media spotlight may be over for now.
It’s been a hell of a week. And I have never once blogged about Christmas.