Open letter to Southern Health

When I was very young my mother told me the story of how a new man became President of the United States.  On the first day he placed a sign on his desk for everyone to see.  It read “the buck stops here”.

She said that in America there was an expression called “passing the buck”.  This means that when there is a problem or a difficult decision to be made, people might try to pass that problem or decision onto someone else till it just went around and around and never got solved.

My mother explained that by putting the sign on his desk saying “the buck stops here” the new President was saying “whatever the problem is, whatever the difficult decision is – in the end I will be the one who makes it”.

I have never forgotten this story.  I must have been very young; perhaps 6 or 7 years old and I salute her powers of storytelling as it has stayed with me so strongly for all these years.

I have been thinking about this story a lot recently.  That and the other maxim “with great power comes great responsibility”.  So I feel obligated to write this and to draw to your attention the fact that the time has come for the buck to stop and for you to shoulder your great responsibility.

The details of our case and how we have been treated by Katrina Percy have been specifically detailed in the Mazars report.  I mention this because I don’t want you to think I’m attempting to present myself and my viewpoint in an unbiased way.  I can’t write more about our case as we’re in the middle of our independent investigation.  However what has happened specifically to us is not the reason for me writing this.  I write now only as a deeply concerned member of the general public.

Everyone, even the most senior of people, are entitled to make a few mistakes.  At all levels it is a truth that “it’s not the mistakes you make, but how you learn from them”.  However, and let us be quite clear on this,  Katrina Percy (your CEO) and your board of governors have not just made “a few mistakes”.

The Mazars report on Southern Health tells us that over 1,000 people died on your watch.  You disputed those figures and managed to get that number lowered to 722 people who died unexpectedly in your care.

722 people.  That’s a lot of people.  That’s the size of my village.

That 6 months on Katrina Percy is still your CEO and your board of governors is now in such public disarray is so shocking.  Instead of dealing robustly with the situation and the terrible findings of the Mazars report you have passed the buck around and around.  Then came the Care Quality Commissions damming report into Southern Health.   The watchwords of your profession – compassion, candour and transparency, have been forgotten in the scramble for your to pass the buck as many times as possible.

Not only have you made yourselves appear heartless but you have managed to make yourselves a laughing stock too.

To use the favourite phrase of Southern Health, “lessons have been learned” but the only people who seem to have learned these lessons are the general public, watching and reading about the farcical antics of your board of governors and the shocking smugness, calculating pseudo ethics and denial of your CEO, Ms Percy.

We have learned that you are more concerned with passing the buck than dealing with the situation or remembering why the buck is meant to stop.

If you want Southern Health not to become a byword for unsafe care and Dickensianly heartless management style – you need to stop this now.  There is absolutely no way in which you can continue as a viable organisation going forward while Katrina Percy is still your CEO and without the board of governors acting in a cohesive and responsible manner.

We, the general public don’t care if you don’t consider yourselves personally responsible for the staggering number of deaths in your care – deaths which are 7 times greater than those people lost in the Hillsborough disaster.  If you think for one moment that you’re going to come out of this all shiny, new and spotless, then you should take a moment to reflect on what has happened and what will be happening to all those in positions of responsibility who attempted to cover up and subvert the quest for justice by the Hillsborough families.

Whether you think yourselves responsible for the multiple deaths or not, by the fact that you took the job and your took the salary – YOU ARE.  The buck stops with you.

If Southern Health are going to survive and go forward you need to see yourselves as we, the general public see you.  Take a reality pill and then take responsibility.  How many of the families of the 700 are having independent investigations right now and how many more will be having them?  How many of these cases will come back to your doors again and again? How many of these cases will see you in court?

Everyone in the top positions of power and responsibility when the 700 people died should now be asked to leave, specifically for their part in the deaths and in the subsequent cover up.  Some of them have already resigned but those who haven’t must now be sacked.  This clearly includes Katrina Percy.  When they are gone then you may be able to salvage what remains and actually learn from your mistakes.  If they stay that will be impossible and you will become untenable as an organisation and as care-givers.

I appeal to you to be the people you want to be.  Have pride in yourself and in your profession and do the right thing.  You have run out of dark corners to hide in and the world is watching you.

Time to step up and stop the buck Southern Health.







Seeing clearly – part 1

By the morning of my eye operation I was so excited by the prospect of being able to see again I practically skipped into the hospital. No – that’s not true.  But I was desperate to be able to function again as a seeing person, absolutely desperate.  If they had told me the surgeon was ill and his dog was going to be operating instead I would have agreed gladly.

And I couldn’t skip into the hospital because a) it was bitterly cold and icy underfoot so not safe for skipping and b) we parked outside the wrong part of the hospital and had to power walk for over 20 minutes to get to the right part, arriving breathless and freezing.

Apart from the initial funny of the nurses trying to stop me going in, convinced I was confused and in the wrong department, it was all very straightforward. I had already had a few experiences of what it’s like when you have an “early onset” condition.  Medical staff are confused by your being there at all and the other patients regard you with a deep suspicion as you are clearly not like them and therefore “faking” in some way.

High-backed chairs were arranged around a room the size of a large sitting room, each with a lower backed chair next to it for your companion. I was probably the youngest person in the room by 30 years (not counting the medical staff) and the majority of people sat in silence, a few chatted a little to each other.  We soon realised it was something of a conveyor belt as a nurse came in to check your details, do your basic health checks and talk you through the procedure.  Then I had a brief chat with the surgeon and then we waited.  And waited. And waited.  After 3 hours of watching people go out to theatre and come back I realised that I was going to be the final person to be seen.  Three albums on the iPod later and many conversations with the MN, it was finally my turn.

I walked into the anaesthesia room. I was so full of excitement and anticipation.  But I think it was in there that reality hit and the wheels of excitement came off a bit.  You know that thing where they say “you’ll feel a little scratch”?  They lie.  You feel a needle being inserted into the back of your hand.  You start to feel anxious and a bit dopey and a bit sick.  Then they started putting special drops into my eye.  They had to use a lot of drops because it wasn’t working properly.  Apparently I have “enlarged tear ducts” (well, they have had a lot of practice) so the anaesthesia for my eye kept going down my throat and into my stomach.  They tried a double dose but in the end had to settle on a double dose x 2.  It really wasn’t that great.

Then they wheel you through to surgery and by now I was in that state where you think you’re normal, but in fact you’re high as a kite.  I’m not going to tell you about the hour I spent in surgery because so far anyone I’ve told begs me to stop, I’m making them feel ill.  All I will say is that having two surgeons in the back of your eye while you’re awake is not great.  I had to dig very deep to get through it, as did they.

In the week leading up to the operation almost everyone told me about someone they knew (or their auntie knew, or someone in their road knew) who had gone through a similar operation and how “it was just nothing” and “they could see brilliantly afterwards”.

This is my message to all of them and to you, in case you’re ever tempted to give similar advice.

It really, really wasn’t nothing. It was an hour long operation inside your eye while you’re awake.  It was pretty bloody awful and immediately afterwards I could see nothing.  I was ill for the rest of the day and everyone who doesn’t get on with anaesthesia and so throws up mightily after their operation will know the total misery I’m talking about.  Plus I could see less than I could before I had the op.

Four days after the operation my sight started to clear and today (8 days after) is the first day that I’ve felt pretty much normal. I have a regime of meds and eye drops to follow for the next few weeks and I have an eye guard (in a particularly flattering shade of NHS plastic) to wear to reduce the risk of getting anything in my eye.  I’m very aware that I now have a permanent implant in my eye and that seems plain weird.  I am the bionic woman, only a size 16.

I will see the surgeon again on 10 February and we’ll set the date for my next operation. I think the next one will be more stressful, because now I know what I’m in for.  However, there’s a very strong chance that by the start of summer I will be seeing clearly, out of both eyes, for the first time in years and I could have many more years of sight before I need more operations.  I am so lucky.  Only a few years ago this operation didn’t even exist and now I can have hours of painstaking, skilled eye surgery to give me back my sight for free.

And for that, NHS, I will be eternally grateful.




2016 – another year

2016 began under a cloud. Or perhaps I should say, in a fog.

Just after Christmas I got up and found I could no longer see across the room. I couldn’t read the clock, couldn’t read the paper or a book and I couldn’t read my emails.  The faces of my family had become pale featureless blobs.  A fog had descended around me.

I felt vulnerable and scared. The pressure of hiding how I felt from my family and trying to manage the most simple of day to day tasks was exhausting.  I didn’t feel like me anymore and I didn’t much like this new version.  I phoned the hospital and my operation date was brought forward to 16 January.

There could hardly have been a worse time for this with the Southern Health scandal continuing to break around me. I could only read emails and tweets with the greatest difficulty and the concentration needed for this task was immensely tiring and seemed to make my sight worse.  It felt as if the rest of the world continued to fight for justice for our precious young people, while I was just standing on the side-lines, wearing dark glasses (quite literally) and unable to contribute.

I was afraid that people would think I had just stopped caring. I wrote a short tweet, explaining that my sight had become worse and so I was taking some time away from tweeting and blogging.  I had some very nice supportive replies, wishing me well in with the operation and I was grateful for these, but I still felt cut off from the fight and alone in a very foggy place.  The end of 2015 slid away without me really even noticing.

The first time it happened was the night of New Year’s Day.

I was woken in the middle of the night. Nico was calling me.  I lay very still and forced myself not to jump up and run next door to his room, as I have done a thousand times.  I refused to go.  I refused to put myself through that torture.  I knew that I would fling the door open to find a silent room and an empty bed.  I had done it too many times before and I wouldn’t let myself do it again.  I lay there with my heart thumping until I went back to sleep.

A couple of hours later it happened again. Nico shouted to me and I woke with a jump.  I lay there, again refusing to go, refusing to let myself buy into the fantasy that I would somehow find him there.  The next day was hard.  I felt under the shadow of what had happened in the night all day.  I told no-one what had happened.  I think part of me was scared they’d say that they had heard it too.

My daughter was staying with us over the New Year. The MN was still on holiday from work and using the time to see friends and let his hair down a little.  Looking back, I can see that having my daughter there was a god-send.  Someone to talk to, laugh with and there was also some fairly hilarious nail painting.

I went to bed pretty tired that night but in the middle of the night I woke with a jump. Nico was calling me.  I could hardly believe it was happening again.  I would not run to his room because I realised I was afraid that I would find him there.  I was afraid that somehow I would open that “low door in the wall” and cross over into a separate reality.  Eventually I went back to sleep but it happened one more time that night and I said out loud “No, I can’t come”, but saying those words made me shake and weep.

The next day I was alone for most of the day. I wanted to tell someone what was happening at night, but there was no-one to tell.  At least no-one who I felt would understand and yet not be upset.  I didn’t want to take my feelings and this story and then force someone else who loved him to know about it, talk about it and have to feel this way too.

Night three. It happened again. This time I kept myself awake for the rest of the night, waiting to see what would happen.  I don’t know which thought frightened me more; the thought of not finding him there or the thought of finding him there.

By night four I didn’t want to go to bed. I stayed up till almost 3.00pm, hoping to trick whatever was happening. It didn’t work and Nico called me in the cold grey dawn.  It was driving me to the edge.

By night five I was going to bed telling myself it wasn’t going to happen that night. It did.  By night six I realised that I wanted it to.  I wanted to hear his voice.  I wanted to answer him.  I wanted to feel that link between us.

On night seven I was woken out of a deep sleep by Nico calling out. I woke up instantly, completely clear headed and finally I knew why he was calling me.  He was telling me he needed me to keep going – that there was still so much more to be uncovered in our fight for justice.  He reminded me that I wasn’t just fighting for me – I was fighting for him and he wanted everyone to know what had happened.  He was telling me to get back out there and keep on fighting.  So I promised him I would.

The next day Beverley Dawkins called me to tell me that some interesting information had been brought to her attention. Using the Freedom of Information act, paperwork between Ridgeway Partnership and Southern Health specifically talking about Nico’s death had been found and read.  It opened up a whole new area which we hadn’t even known about before.  I was instantly back in the fight.

Nico hasn’t called to me since – I hope he hasn’t needed to and a few days later I had my first eye operation.

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The Merry

For a long time I did really well. I kept myself so incredibly busy and so stressed that I didn’t have time to think about it.  But eventually of course I ran out of things to do and that day was today, Christmas Eve.  I kept myself so busy and stressed in the weeks leading up to today it made me ill.  But I thought it would work.

We had so little time to decorate the house and I had to do it in such a rush that there was no time to think about it, I just had to get it done. It was the same thing for the presents, same thing for the cards and for the wrapping.  It was just an exhausting battle with no time to think, just trying to get it all done.

But yesterday that crazy whirl started to slow and this morning it slowed down completely. With little left to do and an empty house for the first time, those thoughts and emotions which I have been hiding from have arrived and I have nothing to distract me.

I was absolutely determined that this Christmas would be better. Somehow I just so desperately needed it not to be the awful misery of every Christmas we have had since Nico died.  We called him “Mr Christmas”, he loved it so, and the pain of every Christmas since we lost him has been just unbearable.

But this year I thought I could trick it. I would be just so busy there would be no time to think and it would be come and gone in a flash of green, red and gold merry before I had time to really register its presence.

Except that now, on Christmas Eve I find myself exhausted, stressed and alone. My thoughts and emotions cannot be ignored.  In time honoured Reed family tradition, Nico’s dad is in the pub and I ought to be watching “Carols from Kings” with Nico while we wrap up presents.  I ought to be singing loudly and Nico was always so proud and amazed that I seemed to know every song (I never told him that if I didn’t know I just read the words off the screen and sang them – he never rumbled me).  We ought to be sitting in a scene of happy, ribbon and paper strewn chaos and singing our hearts out in front of a roaring fire (no matter what the weather, the fire was obligatory) as Mr Reed comes home.

But I’m never going to do those things again. Perhaps in the end what I need to do is to invent a whole new set of Christmas traditions, rather than try to bury my misery in activities so stressful I can’t think, eat or sleep.  There is probably only one way forward and that is to find a new type of Merry Christmas.  To be honest I owe it not only to my daughter and my partner, but also to Nico.

It’s still a work in progress. I tried something different this year and it hasn’t really worked.  But one thing I have realised is that I am not alone in this.  In fact I am one of hundreds of thousands. We are all desperately trying to; if not beat the Christmas misery, not let ourselves drown in it.   At this time you year you feel so alone, but the truth is really very different.  I am thinking of all of you now.

I’m thinking of every mother who will never need to hang up a stocking up again for the much loved child. Every child and every adult who aches to be held by that much loved parent they will never see again.  The agony of a Christmas without the partner you thought you would love forever and grow old with. The pain of a Christmas without that so longed for baby, when everyone else you know seems to have theirs.  The empty dull pain of the marriage which can’t be made to work when it seems everyone else’s can.  The argument which can’t be healed.  The desperate last visits to the hospice.  The knowledge that this will definitely be your last Christmas and your fear for the family you leave behind.

These are only some of the people who are struggling to find the Merry this year. If you are one of these people, or if you are one of the people who find life very difficult, lonely, confusing, fearful and sad – you are not alone, you are also one of many.

In fact, when we look at the truth at the heart of it all, Christmas for most people isn’t very merry at all. It calls into sharp focus who is missing and what we have lost.  It reminds us of how far our lives are from what we wish they were.

So perhaps, the changes that I made for this year haven’t worked out very well, but there is a new knowledge which I am far more certain of.

I know for sure that I am one of very many people who are faking their way through the festive season. We may not be very merry, but we’re here and we’re trying to do our very best.

I hold out my hand to all of you tonight and I wish a very Merry Christmas to everyone.

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Marking the cards

After the “hell of a week” I decided that I’d take yesterday off. Of course that didn’t really work out.  Thanks to my mother I’ve been brainwashed to think that if someone writes to you and you don’t write back promptly, that’s rude. Unfortunately my mother’s brainwashing was in a world before Twitter, so the idea of taking a day off really didn’t work out that well!

After spending several hours on Twitter (attempting to reply promptly to everyone who had written to me) I decided that it was now or never for “operation deck the halls”. We’ve never decorated the house for Christmas this late.  The pressure is so on and once we began we realised the extent of the pressure.

Buy a tree, decorate a tree, clean the house, decorate the house, write cards and send, buy presents, wrap presents. Buy food. Buy a lot of batteries.

Because on a very primal level, my dear MN actually wants to just go and live in his man-cave till it’s all over, where he can drink and cry for his boy alone; he is distinctly lacking in the ho-ho-ho. He announced quite curtly that he was off to get the tree and even that was loaded with symbolism.  We always went as a family to choose the tree and Nico always did the actual choosing.  That is why, inevitably, we ended up with the lop-sided tree, the tree with the missing top branch, the bald tree, the droopy tree – the tree that no-one wanted, which most needed a home.  Nico had an uncanny instinct for spotting the person or the thing that most needed love, and then giving it.  As a consequence, through the years we have had to be extremely creative in using lighting and glittery things to cover up tree defects.

But this year the MN made sure he went out alone to buy a tree quickly and without fuss or even very much “choosing”. Just before he went out the tension ramped up as he started reading some of the tweets sent to me yesterday morning.  Because we still find it hard to tell each other when it’s just all got too much, instead our distress became a ridiculous argument about batteries.

After he left I decided that this was not going to be the theme of my day.  I made a large cup of tea and scrolled down to “Christmas” on the iPod.  With carols blaring out I started cleaning with a will.  Tree and MN (and many, many batteries) came home and there was hugging and some tears.  The rest of the day was me on tree decorating and music choice, him on lighting in all downstairs rooms.

If I’m honest, owing to my current sight problems, the perfectly formed little tree is rather a homage to past, Nico chosen trees, as I have missed bits and misjudged angles resulting in some curious tree stagger and some bald bits. But hey – I like to think it’s exactly as Nico would have wanted it!

I then turned my attention to cards. I’ve made a list for this year and I also found last year’s list.  I used to be a huge card sender.  I loved picking the right card for the right person and each of my messages were individual and carefully thought out.  But last Christmas was the first year after Nico’s death that I even sent. It was hard. I made no attempt at words really.  I just put their name at the top and “from the Reed family” at the bottom.  It was the most I could manage.

This year I’ve done better I think. For a start I bought all my cards from Mencap because I wanted to give something back to a charity which did so much for us last year.  I’ve also written individual messages and perhaps most significantly, for the first time – I also wrote our names at the bottom.

This is significant because it’s very much the reason why I stopped writing Christmas cards. Christmas 2012 was less than 3 months after Nico died.  I sat with my pile of cards and I realised I couldn’t write a single one.  I simply could not bring myself to write our all names at the bottom as I had for over 20 years, and miss one of those names off.  We wrote our four family names, with love.  Now suddenly to write just three and leave a gap was more than I could bear.

I didn’t know how to write the word Merry or even the word Hope. I just sat for one utterly miserable afternoon just looking at a pile of cards I couldn’t write on and I couldn’t bear to touch.  In the end I just picked them all up and put them back in the box.  We sent no Christmas cards that year.

The following year my MN wrote the cards and it was he who came up with the idea of writing the slightly less painful “Reed family” at the bottom, so last year I did the same. I don’t know how he feels, but I still want so very badly to put Nico’s name on as well.  He hasn’t stopped being a member of this family.  He’s still my son.

This year I’ve also done something I haven’t done since Nico died. I actually read some of the cards that were sent to us.  A few have thoughtful messages full of love and remembrance. Others are dashed off, obviously with the same words that were written to all on their list.  As I read them I wondered how many of the writers had thought about us when writing those cards, really thought about us when they had that flash of memory and remembered not to add on Nico’s name.

In the week before that terrible Christmas of 2012 I received a card from a lady called Sarah. Although we always exchanged cards I hadn’t seen her that year.  So she wrote the card she had always sent – with all our names including Nico’s and all 4 kisses below.  I loved that card so much.  I held that card to my chest and I could hardly breathe.  In the sea of misery which was our first Christmas without Nico, I loved that one card because it was ordinary – a card from simpler, happier times.  A card written to a normal, happy, loving family at Christmas.  I still have that card and I still put it out.  Thank you Sarah.

Sometimes you need to remember happier times at Christmas.

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Mazars – so far

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.

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1,000 lives

Since the Mazars Report on deaths in the care of Southern Health NHS Trust was leaked to the BBC on Wednesday it has burst out of our TV screens almost without ceasing. For families like ours, families both featured in the report and affected by the reporting, it has been incredibly hard.  We had no warning, the first we knew about it was quite literally when we were seeing it on television for the first time.

It has been shocking. But we are families still living with the shock, the pain and the heartbreak of losing family members, so watching every report is almost an extension of this.  These are emotions which every single family involved are used to dealing with.  Most of us have already experienced years of anguish at the hands of Southern Health.

Now seeing it being discussed in the House of Commons, on the television and in the papers, seems almost surreal. Even more bizarre are the people in the pub, in the shop and in street who suddenly want to talk about it.  They’ve had no interest in talking to us about it for 3 years, but now they do.

Perhaps the clue is in an email we received yesterday. I won’t say who sent it because it might embarrass him and I’m the last person who would ever want to cause embarrassment or suffering.  I know suffering.  Part of the email reads:“All the things you were saying, Rosi, when we were talking, were true – and it is terrible that it has taken all this time to bring it to light. I admire both of you enormously for your strength and for the way you have held things together in the face of such grief – and such injustice” 

Never at any stage since Nico died has it occurred to me, till now, that anyone might think that what I was saying wasn’t completely true. Now I realise that perhaps one of the reasons why we have been distinctly lacking support from family and friends is because they (at worst) doubted the truth of what we were saying and (at best) thought it possible that our pain and grief was causing us to look for wrongdoing where there was none, or exaggerate what had happened to us.

Or simply see events through the distorted glass of grief.

Now they can see that not only have we said the truth, but even more powerfully, we are very far from being the only family it has happened to. Since Wednesday there has been so much discussion in the media about the “1,000 deaths”, meaning the 1.200 people who have died in the care of Southern Health.

The focus seems to be so much on the number of deaths and of course that’s completely right. But in the last few days I’ve been thinking a lot about the fact that before there were 1,000 deaths, there were 1,000 lives.  Before these people became death statistics, they had lives.  They were real people.

My son Nico had a life. He lived to be 23 years old.  He died very young it’s true and many, many years before he should have.  He should have outlived me.  But nevertheless, he did have a life.

He was the centre of our family. The bossy little Aires in a family of Libras and Pisces.  We all danced to his tune and we did it happily.  Nico liked a lot of attention and he liked to be the centre of attention (can’t think where he got it from!).  Growing up in a wacky household like ours suited him perfectly.  We really didn’t do “can’t” and so neither did he.  When he was really small I was still dancing professionally and he often came to the theatre, or the club or the party, wherever I was performing.  By the time he was 5 his older sister had started to dance professionally too and so he was completely at home backstage in a theatre, in the rehearsal studio, in a TV studio – he thought all families were like us and because we always acted as if Nico was just, well Nico, everyone around him did so too.

He loved sailing, so we took him sailing. He loved animals, so we took him riding.  He loved mountains and dangerous, precarious paths – so that was where we went too.  His father was utterly fearless with him, so Nico had no fear.   I taught Nico to love all types of music – there was no “cool” music, just great music.  So Nico loved Flamenco, Faithless and Sean Paul with equal devotion.

Nico was never surprised when people flocked around him adoringly. He more or less expected it!  He knew how to play a crowd though.  He had this neat little trick which absolutely never failed to work (particularly on pretty women) of dropping his head and then looking up at them through his very long eyelashes with a little coy smile which would widen and widen into a great big grin when he saw how utterly they had fallen under his charms.

Nico had his “special” people. People who knew how much he loved them and their shared love could fill a room with the joy it brought to both him and to them.  I’m so lucky; I was on that list of special people.

Nico, I miss you a lot. Oh, I miss you so much more than I can write down here.

But I remember that long before you became a “Thousand deaths” statistic, you had a wonderful life and now we need to bring those responsible to book for the loss of those 1,000 precious lives.

Then we need to make sure that all our special young people live out their lives without fear, without pain and without becoming more statistics.

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GMP (genetically modified percy)

Katrina Percy was almost genetically designed to be the CEO of a large health trust. She’s the product of a GP father and a physiotherapist mother, who actually worked for Southern Health for a while.  Born and brought up by health professionals, from a young age Katrina Percy would have been included in conversations about the importance of good care, transparency and honesty within the NHS.

Her background may be the reason why she’s climbed so fast, so high. She’s young to be the CEO of a vast health organisation.  She’s young to be in charge of over 9,000 employees.  She’s driven and tirelessly working to promote herself and her organisation. She never misses an opportunity to tell the world about how fantastic her staff are and how good her management team are.  Of course they are Katrina; you must have trained them to be just like you.

In 2013, in the same month that Katrina Percy won the Health Service Journal’s chief executive of the year award she wrote to us. If you read this blog regularly you’ll be familiar with certain parts of her letter in which she rubbished and rebuked all our complaints and questions regarding our son’s death and instead told us:“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.” 

Now I know that she’d just been awarded HSJ chief executive of the year in the same week she wrote to us, I can see why she felt completely confident to say this to me. Top of her game, untouchable, Teflon coated, ambition almost completely fulfilled.  Next stop for her – who knows, top government health advisor? The world at her feet.  No wonder she had little trouble stepping over our annoying, moany little letter.  She really wasn’t going to let the death of our son ripple in her world.

Now social media and national media are full of outraged people asking why she won’t step down. One answer is that she doesn’t want to. Like a lot of deeply ambitious people, she is vain.  Now that the wheels of her career are starting to come off she isn’t ready to jump out.  She wants to stay and fight.

But not because she thinks she is right. She wants to stay because she refuses to relinquish all that hard work, all that sacrifice and ladder climbing.  She cannot let it all be in vain.  She refuses to admit that her name could ever become a by-word for callous mismanagement.  That was never part of the plan.

Luckily she doesn’t have to go because the board of directors at Southern Health still need to keep her in place. To let her go would be admitting they are in the wrong and they are still a very long way from doing that.  Letting Katrina Percy go would be like admitting that there is a reason she should go and that’s completely at odds with their current position, where they tell us that far from Southern Health being the monsters portrayed by the Mazars Report they are actually only guilty of the deaths of 700 people at most.

Only 700. Well that changes everything doesn’t it?

The Mazars investigation team that put together the report have fudged the numbers, possibly maliciously and possibly just through stupidity.  In fact, says Southern Health, the remaining 500 deaths were not their fault and can be put down to “natural causes” like heart attacks.

They are fond of “natural causes” as a reason for death. Possibly fond because after such a death they find it all so much easier to wash off their hands and pop the paperwork in a high, dusty drawer.  Southern Health said that young Connor Sparrowhawk died of natural causes when he drowned alone and unsupervised with the staff who could have saved him literally just feet away.  They told the coroner at Nico’s inquest that he died of natural causes.  Their solicitor told the inquest that there really was no reason for them to be there at all because; “Sad as it is, we have to expect such deaths in young people with profound disabilities”.  In both cases the coroner didn’t agree, thank god.  In both cases “natural causes” was found not to be the cause of death.

So that’s 2 down, so what about the other 498. Shall we argue each of them out with you one by one Southern Health?

While they frantically play for time perhaps the board of Southern Health should seriously consider if they would rather sink their ship entirely by keeping Katrina Percy on board, or would they would be better off to throw her overboard and possibly have the chance to continue to float?

Katrina Percy has spent her entire working life making sure she gets noticed. It seems karma noticed you too Katrina and now you’re going to have more attention than you thought you would ever want to handle.

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The Hardest Word

My mother was a very wise woman. She told me once that the mark of maturity is understanding how and why to apologise.   She said that you should never be afraid to be wrong and to admit you are wrong.

She told me it takes 3 steps. Step one was to admit to the person that you were wrong.  Step two is to apologise, but the apology only works if you understand why you’re apologising and what you’re apologising for.  The third and final step is to offer to make amends in a real and lasting way and this has to be something done not on your terms, but on the terms of what the person you’re apologising to.  It has to be what they want and need.

This means that a successful apology requires a certain degree of humility. You need to sufficiently comfortable in your own skin to be able to do this without feeling it diminishes you.  You actually need to care more about getting it right to the other person, than about how you appear.

I was speaking at an NHS Ethics conference in Coventry 2 weeks ago and at the end of my speech I asked if anyone had any questions. A senior surgeon raised his hand and asked me if Southern Health have ever apologised to me.  I actually laughed – I couldn’t stop myself, as the thought of them apologising just seemed so ludicrous.  I replied “No, we’ve never had an apology and I know now we never will because in order to apologise they would first have to admit they were in the wrong”.

I watched Katrina Percy, the CEO of Southern Health being “door stepped” by BBC’s Michael Buchanan this morning on the national news. She looked haggard, dishevelled and certainly not in command of her own wardrobe, let alone a large NHS health Trust.  However, she had clearly never met my mother, or been given any good advice in her life around apologising as she had this to say:

“My job is to lead a very large organisation and make sure that we have the right environment for our doctors and nurses who work really hard every single day. That’s my job and I’m continuing to do that at the moment”.

Did I blink and miss it? Was there an apology there at all? I didn’t actually even hear a reference to the actual events which are unfolding as we speak – I heard no acknowledgment that people’s beloved sons and daughters have died on her watch.  Died and then she tried to just sweep them into the corner, unnoticed.

Yesterday in the House of Commons I received an apology, but sadly it broke all three of my mother’s “good apology” rules.

When Jeremy Hunt the Health Minister, apologised yesterday on behalf of the NHS, he told us that he was profoundly shocked at the Mazars Report’s findings. He went on to say:

“Today I would like to offer her (Sara Ryan, Connor Sparrowhawk’s mother) and all other families affected by similar tragedies, a heartfelt apology on behalf of the Government and the NHS”.

Hmmm….. Close Mr Hunt, but not quite right. Let me take you through those apology rules again Jezza and while I have your attention, I think you should be listening to this too, Katrina Percy:

Rule 1. “Admit to the person you were wrong”. That means actually people – not some blanket, all family apology.  Ms Percy you definitely know my son’s name and you know my name too.  You can tell Jezza what it is if you want to. You can use our names to remind everyone that those thousand people who died in your care all had names and faces.  They all had loving, now grieving families.

Rule 2. “Understand why you’re apologising and what you’re apologising for.” I don’t think I need to elaborate on this one, but frankly Ms Percy as no-one has even mentioned the “hard working doctors and nurses” in your company, so it sounds very much to me as if you’re really not sure why you’re apologising to and what it’s for.

Rule 3. “Offer to make amends in a real and lasting way and this has to be something done not on your terms, but on the terms of what the person you’re apologising to.  It has to be what they want and need.”  I’m waiting.  I’m happy to wait until you’re interested in even asking me what I want and need.  I’m also very happy to tell you – you really just have to ask.

And so it seems that sorry really is the hardest word. Or maybe it’s just so very hard to say when you don’t mean it and then it just becomes another sound-bite echoing through the air.  Blowing away in the wind.  Until it just becomes nothing.


The 1%


“A failure of leadership at Southern Health. A lack of transparency, missed opportunities, raising the prospect that some deaths could have been avoided if earlier incidents had been properly investigated” 

So said Michael Buchanan in his damming BBC headlining report on Southern Health NHS yesterday. But I can’t be sure at his point if Nico would have been living, safe and well today if “earlier incidents” had been investigated, or in fact if his death was one of those earlier incidents.

Death as “incident”. When you describe it like that you can almost see how easily a culture of non-investigation could thrive in a large NHS Trust.  After all, investigation takes, time, money, resources and a willingness to be thorough and painstaking.  It also requires you to believe that such an investigation is important and necessary.

Of the 12.000 unexpected deaths in Southern Health care, 30% of mental health deaths were investigated but only 1% of the deaths of young disabled adults in their care were even formally investigated.

My son Nico wasn’t even one of the 1%.

Nico was disabled, non-verbal and needed 24 hour care. The fact that he was funny and bright, loving, friendly and kind was irrelevant to Southern Health when he died.  His death was so unimportant to them that they decided that only a “Root Cause Analysis” was necessary.  Not a full investigation.  Just a quick who, what, where and why.  Conducted in house of course, no need to bother outsiders.

But we made a fuss about his death. A stupid time-wasting fuss. How selfish of us.

So Katrina Percy, CEO of Southern Health finally wrote us a letter to shut us up and get rid of us. 6 months after Nico died. 6 months of me making a fuss.  In this letter she told us:

“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.”

For those of you who don’t speak “jargon” they’d had an in-house investigation and had decided not to tell us that they’d had one and had also decided not to tell us what had killed my son – because it might upset us.

Southern Health said in their statement to the BBC that “they have been learning from deaths”.   At Nico’s inquest, over 2.5 years after he died rather than show us just how much “learning” they had been doing, Southern Health demonstrated a sharp desire to crush us.  They had spent a considerable amount of public money bringing in a “ringer” a top solicitor well known for his excellent work in winning high profile inquests for public sector organisations.  They lied at the inquest, they mislead the coroner.  They showed us that actually what they had “learnt” was to crush us hard and mercilessly.  Close down our campaign as quickly as they could.  There was absolutely no sense whatsoever that they regretted what had been done.

Now it seems almost inevitable that Katrina Percy will be forced to step down from her job as CEO. Quite rightly.  I cannot comprehend why she didn’t do this herself as soon as she found out that precious young people had died horrible, needless deaths on her watch.  But will she be cast out from Southern Health as the sacrificial lamb?   After her demise as CEO will it just be business as usual for Southern Health and is it possible for us all to stop that from happening?  To what extend should the work of large NHS Trusts be monitored and perhaps more importantly, how can we make sure that they even understand what “doing well” looks like?

Southern Health took over Ridgeway Partnership in Oxfordshire. They took over the running of the house where my son died and every other home, house, hospital and ATU unit that Ridgeway Partnership ran in Oxfordshire.  They changed nothing, staff were re-graded so they could pay them less, but otherwise nothing changed.

Now Southern Health wants to blame poor practices in Ridgeway Partnership for many of these deaths. “It’s not our fault – it was them!”  But the truth is that when you take over another business, if you are good at what you do, you look closely at current practices and where you feel they are weak or dangerous, you make urgent changes.  If Southern Health didn’t like the way that Ridgeway did things, they had ample opportunity to instigate sweeping changes – but they chose not to.  They even kept on the same staff in their same jobs and just gave them snappy new Southern Health style titles.  It was all business as usual.

This suggests to me that they had no real grasp on what excellent practice is and that simply cannot be blamed on the CEO alone. The instigation and continuation of excellent practice can be found at any level.  All it takes is good, well trained managers at all levels, put into place by a board of directors – all of whom know what good looks like and are absolutely determined to deliver it.  Good care costs no more than poor care but what it does require is for the top down of an organisation to want it.

When these huge and damming reports sweep across the media it’s very easy to forget to include the families affected and I’m not even talking now about us or the family of the most high profile victim of Southern Health, Connor Sparrowhawk. I’m talking about the frantic, traumatised families who have their beloved sons and daughters in the care of Southern Health right now.  How do you think they are feeling today?  How do you think they felt when they turned on their TVs last night?

If these families are going to sleep at night they need to absolutely know their children are safe and will stay safe and that means more than just sacking the CEO and maybe a couple of expendable board members. They have already had a bellyful of slogans, jargon and rhetoric from Southern Health – now they want to see good care.  So I suggest that when the dead wood has been pruned from Southern Health, we all do our best to help them become worthy of the people in their care.

But we really shouldn’t kid ourselves – Southern Health are not the only NHS Trust caring for disabled people who have blood on their hands. I strongly suspect that the true figures for unexplained deaths “Death by Indifference” as my friend Beverley Dawkins put it in her 2007 Mencap report, would be so high that you would be staggered.  12.000 unexplained deaths in the hands of Southern Health – how many deaths would that be across the UK if all the NHS Trusts were added together?

In these times of ghastly cuts to our social care system, cuts which frankly put disabled people’s lives at risk – is it possible to instigate reforms, to save lives, deliver excellent care and still come in on budget?

Or are we all just sitting here and waiting to hear the next damming report? The next set of figures?  The next expose of the next CEO?

Exactly this time and this day last year, Nico’s inquest was beginning. I wish with all my heart that I could be sure there will never be another family who will suffer as we do.  But for that to happen we need to look at more than just changing one bad CEO of one Trust.  We need to look at what is happening to the care of our young people nationwide, and urgently.

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