Eternal Flame

On Thursday I was listening to the radio.  Recently I’ve had the radio on in the house in the afternoons.  I used to pass my days at home in silence.  I like to work in silence and I find background noise distracting, but it also means that I can spend over 8 hours a day in complete silence, which sometimes seems to make me just too thoughtful, too introspective.

So my plan is that a couple of hours of Radio 2 will break that up and give me some contact with the world outside of my head and my computer.

Yesterday I was listening to the radio and a song came on that make me literally shake and made tears run silently down my face.  That song was “Eternal Flame” by The Bangles.  Not everyone’s first choice for a song to move you to tears but for me this song is very special.

When I was pregnant with Nico I determined to have the “good birth experience”. The one I didn’t have with my daughter.  When I was in labour with her I asked the midwife for pain relief and she replied “no, you should suffer, you wicked sinful girl” So the MN and I made elaborate plans for our perfect home birth.

By incredible luck our midwife lived a few houses away on the same side of our road and she agreed with the plan about having the baby in our bedroom surrounded by everything familiar and with our specially made music playlist so that our baby would be born to the sound of lovely music.  I bought a new nightie,  new bed linen, I made a playlist tape (oh yes, those were the days of mixed tapes!) and the MN worked hard to finish off all the DIY to the bedroom.  Everything was going to be just as perfect as we wanted it to be.  But life so seldom is interested in our plans is it?

Two weeks before my due date the hospital discovered that they had made a mistake and given me someone else’s blood sugar results.  So when a few weeks earlier I was told that my blood sugar levels were great, they actually should have told me was that I had incredibly high (almost off the scale) level gestational diabetes and needed a total diet change and monitoring.  But I had spent almost my whole pregnancy in blissful ignorance of this.

So all our plans were off and instead I was booked in for an induced hospital birth on my due date.  Bum!  However, we arranged with the hospital that we could use their “family room” which was then a very new idea.  A hospital room in the maternity ward, but laid out like a normal bedroom with wallpaper, pictures, a bed of normal width and height, arm chairs with cushions etc.  We thought it would do.  It was a non-scary room and owing to my previous birth experience I was already having the heebie-jeebies, so I needed there to be a lot of non-scary around.

Armed with our cassette player (front loading Sony, only the best in high tech for us!), my specially made mixed tape, my water spray, cologne, sucky sweets, clean nightie, dressing gown, hair brush and bag of yellow baby clothes (because we didn’t know if it was going to be a boy or a girl and as everyone knows, that means lots of lemon to cover both possibilities) we went in on my due date.  My mother had arrived the night before to stay with us, take my daughter to school and keep things happy and normal for her.

Again, things didn’t go quite as planned.  After the initial injection I had a few contractions which gradually faded away to nothing.  By that evening the midwives conceded nothing was going to happen that day and I sat up in bed eating toast very unhappily by 9.00pm and the MN went home.

Bright and early, on the dot of 8.00am we were once again a sea of activity.  The midwives arrived, the MN arrived and they tried again.  I knew it was 8.00am exactly because we had turned our cassette player over to “radio” and were listening to the news.  As I had my inducing injection again it was announced that the UK was accepting applications from Britons wanting to train as astronauts.

Simultaneously my injection kicked in, the MN announced he was going to apply to be an astronaut and a massive contraction threw me off the bed and onto the floor.  I threw up all my toast from the night before and we knew were in business!

I strapped on my TENS machine and we got stuck in.  Most of the next 3 hours I don’t really remember.  The 10 metre long corridor between the room and the loo became like an endless frozen wasteland, with me clinging to the walls when things got bad, but we also had lots of giggles along the way.

By 11.00am, only 3 hours after it all kicked off, we were nearly at the finishing post.  I became rather obsessed with the pink candlewick bedspread I was lying on and after a few gasps of gas and air treated everyone in the room to my theory of how the candlewick bedspread reflected the waves breaking on the Grecian shore.

But in all the fuss no-one remembered to put the cassette player back onto “tape” and instead it stayed on “radio” which meant my mixed tape was never played and instead – with his blue, blue eyes wide open and staring all around, my son Nico was born to the sound of The Bangles singing “Eternal Flame”.https://www.youtube.com/watch?v=qNDifMyQuv8

Yesterday, it was the first time that I had heard that song again in many years.  Suddenly the words took on a whole new meaning “Is this burning an eternal flame?”  I know the answer now. Yes it is – it really is.

On the whole I think Nico did much better than my daughter, who was born to the strains of “Hey fatty bum bum”.  Nuff said.

With Bunny

White Noise

A few weeks ago on Twitter a concerned and hard working woman was talking about her job training future social workers and she used the phrase a “privilege to work with their minds and values before they are set free into practice”.  This made me think about those social workers in training, their aspirations and hopes for the future.  Their yearning to make a difference in the world and their thirst to do good.

It also made me wonder at what point their training includes treating parents of disabled children and adults as if they are a blot on the landscape?  At what point are social workers told to ignore parents, belittle them, bully them and make sure that their wishes are ignored?  At what point are they taught to act as if the words of the parents are simply white noise?

I certainly can’t imagine the woman on Twitter ever including that in her training course.  I absolutely cannot imagine any university course for social workers, any college course for social workers or any other type of course anywhere ever including “how to not listen to parents” as one of the training modules.

So how does it happen? When does it happen and why does it happen?  It there any way we can stop it happening?

I realise that at this point some of the people reading this will say that they know a social worker who is wonderful, who has turned their awful situation around and enabled their child/young person to lead a happier, safer and more fulfilled life.  I also realise that there will be social workers reading this who’ll be hurt, affronted and feel that my description bears no resemblance whatsoever to the work they do and the people they are and the people they work with.

And that will be true, because for every story there’s a contradictory story.  For every person who’s not good at their job there is someone else who shines out.

But the big and inescapable truth is that I’ve had many parents write to me with their horror stories concerned dealings with social services.  Stories of pain and frustration that they simply cannot get their social worker to listen to them.  They almost seem to be deliberately ignoring their pleas.

Nico never had a social worker.  We were never offered one.  Having one was never discussed with us and actually he was 15 before I was even made aware that he could have one, or that many families in our position did.  I remember the first social worker who came to visit us.  It was 2003 and Nico was 15.  She came into my house and told me a lot of stuff I didn’t understand.  She had never met Nico but she told me in ringing tones that I really needed to start living in the real world and accept that Nico “had the intellectual capabilities of an 18 month old baby”.  I asked her why she would say such a nasty thing to me without even knowing him or really even knowing me.  She replied that it was high time I put an end to my fantasies and accepted that my son was “hopelessly retarded” and was going to die young anyway, so I should stop planning for a future that wasn’t going to exist.  Then she left.  I never saw her again and a year or so later I heard she had retired.  I have never forgotten her and I have never forgotten her words.  She had no interest at all in actually meeting my son or hearing any of the things I was trying to tell her.

But that was just the beginning.  In 2008 when Nico was 19 (oh yes folks, the dreaded “post 19” story) we received a letter telling us that Nico was being allocated a social worker.  However it seemed that this was going to be good news as his new social worker was a woman we had known for years.  She worked for years at Penhurst, where Nico went first to school and later to their young adult unit so he was there from the age of 6 to 21.  This lady had known Nico well for some time and her mother still worked with Nico at Penhurst.  We thought this was a gift and in fact our first few meetings with her were just great.  She cut through all the acronyms and jargon and explained everything to us.  She was so clearly on our side and told us that she was going to be there for us to help us through, thick and thin.

Then out of the blue, in July 2010 she wrote to us saying that Nico was to be removed from Penhurst as soon as possible and moved to somewhere cheaper.  Our safe, happy little world collapsed.  In the many, many meetings, letters and emails in the months that followed, she never again listened to us, supported us or did or said anything at all which suggested she cared about us, or about Nico’s future.

The events which passed between that letter arriving and Nico moving to Barrantynes, where he died, will be part of the Independent Investigation which has just begun.  In the circumstances I can’t talk more about it at this point, though I am guessing that many of you will be able to fill in at least some of the blanks.

So how did this caring young woman turn into someone who had no interest at all in what happened to Nico, so long as she fulfilled her brief of getting him out of Penhurst?  What turned her from someone who listened and cared to someone who just heard white noise whenever we spoke?

For a start, cuts from the new government began. Deep cuts.  Cuts that made maintaining an outstanding level of disability care impossible.  If I had been put in her position at that time I would have resigned and then contacted us, offering to help using her specialist knowledge.  But she didn’t do that.  Instead she was offered a promotion based on her ability to coldly and heartlessly destroy the care package that was keeping a precious young person safe and well, and move them away, to anywhere so long as it was cheaper.

There must have been others and there must still be others to this day, who battle on, hoping to do good and to make a real difference from inside the system.  But perhaps they feel overwhelmed and by now are physiologically scarred by their own inability to be a force for good, when prevented by the state.  Perhaps it all seems so terrible that they simply cannot allow themselves to identify with families.  Cannot let themselves hear the anguished and pleading voices because they know that if they do, they will only have to deny what they so desperately need.

I have been studying the SCiE website (Social Care Institute for Excellence) http://www.scie.org.uk/ which is a very good, very interesting website.  It is clear from the various articles and blogs featured there, that the SCiE are deeply concerned about what is happening in social care now.  They are anxious to support and train social workers to be the best version of themselves that they can be – particularly in light of the on-going cuts to Social Services.  They are clearly aware of the “white noise” effect and what they would like to do to help all social care workers improve the service they give.

But perhaps they are already too late.  Perhaps the war has already begun.  As I write this, Oxfordshire (the county we live in) has just announced a further 52.6 million pounds of cuts to social care in the county, on top of the millions of pounds of cuts which have already been forced through.  This will take social care in Oxfordshire to the point where it’s untenable and inevitably there will be great suffering and deaths as a consequence.

There have already been two well documented responses to this; one is from an alliance of voluntary sector organisations and care providers who have formed an unprecedented coalition to try to fight these cuts.  They call themselves the “Enough is Enough” alliance and they hope to not only stop these cuts but make more people aware of the effects that the existing cuts are already having – of how many lives have already been blighted and destroyed and also to make people aware of the devastating effect the increased level of cuts will have.

The other well documented response is from a local Oxfordshire MP who has written to Oxfordshire County Council urging them to re-think these cuts.   He suggests in his letter to the council leader “the proposals for possible cuts were disappointing and suggested the Conservative-run council should look at back-office savings and shared services between the emergency services instead.  There is still significant scope for sensible savings across local government to be made by back-office consolidation, disposing of surplus property and joining up our local public services; we will be discussing with Oxfordshire how this can be taken forward to help protect frontline services.”

Ah yes, interesting………..but you see Mr Cameron, as well as writing letters protesting about these cuts, YOU are the person largely responsible for them in the first place.  If you really don’t like them, there’s such a simple answer.  DON’T DEMAND THEM.  CANCEL THE CUTS DAVID.

But that seems unlikely.  The lines for the new war are already being drawn up.  The opposing armies are already digging in.  I have the strong feeling it will be the families who end up sitting out in no-man’s land while the shells fly over their heads.  It’s already becoming the norm for most families with disabled children.

So my question is this – when did it start to be normal that our voices became white noise?

028

Telling Tales

On 21 October I wrote on my blog that the successful candidates who would be heading up Nico’s investigation were the Health and Social Care Advisory Service (HASCAS) lead by Dr Androulla Johnstone.

Two days later I received an email from a man (who I won’t name here as it isn’t essential and I haven’t got his permission to include his personal details here) I have never met and had never heard of.  He warned me that a man called Jon Allen, a Non-Executive Director with Southern Health NHS Foundation Trust also held a directorship with HASCAS, although his name didn’t appear on their list of directors.  He clearly had nothing but my own best interests and those of Nico’s investigation at heart and wanted to make sure that a great injustice wasn’t done – with Southern Health already tainting the investigation before it had even begun.

I replied to his email and we wrote again to each other a couple of times.  He had also lost a son (under very different circumstances) in the care of Southern Health and was clearly both a very clued-up guy and a caring guy.  I thanked him and assured him that I would be looking into this very carefully and thoroughly.  I emailed Oxfordshire Clinical Commissioning Group and Beverley Dawkins immediately to let them know the situation and we began to look into this.

The man who emailed me then tweeted about this and about his concerns with who was involved (potentially) in our investigation.  His tweet was quickly picked up by some big hitters in the social media disability world and it was re-tweeted a lot.  Then various people started to comment on the “situation” and those tweets were re-tweeted as well.  It started to grow and spread very rapidly.  To my horror I realised that in the course of one day this “news” was being spread around without anyone asking me about the situation.  I posted a tweet, asking everyone to calm down and please to give me time to look into this and I would then let them know.  A few people re-tweeted my comment but the other comments continued to be seen by more and more people.

The validity of our investigation was being questioned on social media before it had even begun.  This was getting serious.

We had chosen HASCAS as a interview panel of people and one of our panel was away on holiday and would be back soon, but it would be after I had left for my own holiday.  We had a conference call and agreed that this was a matter of urgency.  We needed to establish all the facts very clearly and some of this would be done while I was away.

I came back from holiday to find that the Twitter storm had totally died out as other more interesting things had happened in the meantime, but as I said to the rest of the panel “people remember and mud sticks”.  I don’t need anyone to tell me that often the truth is an inconvenience which just gets in the way of a good story.  I knew perfectly well that unless we absolutely knew beyond any shadow of doubt, the total truth of this, then my son’s investigation would forever be tainted in some way.  After the amount of work that I had put into writing the Terms of Reference for the investigation, choosing the interviewees and then interviewing them, no way was I going to let this get trashed at this stage, before it had even begun.

So here my tale of truth and it is completely true.  I was totally prepared to dismiss HASCAS and start again if I needed to.  I was not prepared to compromise, bend the facts or in any other way accept a half truth.  It may be that you were one of the people who tweeted about us being compromised by Southern Health, so now you’ll know the truth and it isn’t quite such a shocking story.  But it is the truth.

When Dr Androulla Johnstone was interviewed one of the things she told us was that Jon Allen had previously been a director at HASCAS but he had stepped down from this position prior to their applying for the investigation.  She volunteered this information at the end of her interview. At the time we thanked her for letting us know, but thought no more of it.  It didn’t occur to me at that point there could be a conflict of interests since the bloke had gone.

But in these new circumstances we wrote to HASCAS, seeking further explanation and assurances.   Androulla Johnstone wrote back (and this letter arrived while I was away on holiday) to say that Jon Allen had been a company director with the HASCAS trading arm for a few months and stepped down in August this year.  But he was never a director with the part of HASCAS which carries out investigations.  When Androulla interviewed with us Jon Allen had already left HASCAS, so they believed there to be no conflict of interests.

HASCAS and HASCAS Consultancy (the trading arm of the company’s official name) are two entirely different legal entities with separate boards. They don’t share information, both run independently and are financial separate.   One simply helps to raise funds for the work of HASCAS to continue.

However (and I think this shows the power of social media) we then received an email from Southern Health about this!

It was from Lesley Stevens (who has featured in this blog before now and not always in a warm, fuzzy and favourable way) and it read “It has been brought to my attention that there has been comment on social media that HASCAS is not independent from us because one of their directors is also a Non-Executive director with Southern Health.  This is inaccurate.  Jon Allen recently joined Southern Health as a Non-Executive director and at that point he resigned from HASCAS.”

So HASCAS says Jon Allen doesn’t work with them and both Jon Allen and Southern Health thinks he now does work for them.

So finally we can begin my son’s independent investigation.   Now we can start the part that really matters, which is getting to the heart of what happened, how and why.

Yet this has been another learning curve for me.  It has taught me not to doubt the power of social media to spread a message fast and widely.  It has taught me the absolutely importance of “getting it right”.    I think I was naïve not to think that other people would be watching this all very closely.  I’ll try not to make that mistake again.

Sometimes I feel that only a very small number of people either read my blogs or watch my tweets, but now I’m not sure about this – and I’m certainly less sure about who those people actually are.

After all, Southern Health is so convinced of the power of social media that they have their own social media department.  They spend a lot of time and money tweeting, blogging and generally writing sharp edged spin about what they do and what they’re going to do.  If they actually ran their organisation in the way that their spin doctors claim they do they’d be pretty wonderful.

Southern Health – the Blairites of disability care.

 

Signposts

Of the people I follow and of those who follow me (on Twitter and via this blog) and of the people I support away from social media, some are much nearer to the start of their journey, some are still loving and fighting for their children and some are further on in their journey than me.

At the beginning I found this almost endless variety of personal circumstances bewildering, but as I am getting further down the road I am starting to recognise some of the signposts.  Things that people told me a year ago which made no sense then now make so much sense as I too reach that place.  I remember what they said and it comforts me.  I have the feeling of some sort of progression.

Often that progression is personal, rather than in terms of “justice fighting” but I now realise how important personal growth is as well as legal progression.  It shows me that there is a way forward; a way to move towards the light.

But far harder to deal with is supporting people who are at an earlier stage of their journey, just as a year ago some people must have listened to me, their hearts gone out to me and thought “she’ll understand this in a year or two”. Now  I write to and I write about, families who are living through the truly awful times I have already lived through and perhaps the worst thing for me is that I know, I really know, what they are going through and I am very limited in the way in which I can help.

It isn’t sympathy.  It isn’t even empathy.  I don’t just “feel it”.  I have lived it.

So when I read their words of white pain and anger I want so much to help.  Help in practical ways with advice around inquests and dealing with the un-carers, advice around raising money, finding the right legal help, finding the right support and knowing where and when to push hard and when to hold back.  I also want to say “this way that you are feeling now is normal.  It is the way that we have all felt and although the pain is excruciating now, one day you will feel that it was worth it”.  But when you are living in the excruciating pain, being told that is meaningless and trite, so often I don’t even say that.

In the weeks following Nico’s inquest I fell into the blackest hole.  It was perhaps the deepest abyss I had been in following his death.  Days before Christmas and I couldn’t even get out of bed.  I was saved from this horror by a simple phone call.  Beverley Dawkins called me up basically to tell me that if I was feeling really low, really very bad, this was normal.  After the inquest you sort of “crash”.  As she talked to me and explained this, I felt as if I was being given permission to be this way and by the end of the phone call some of my blackest despair had started to lift.

I look back now and completely understand this.  In fact now I think “how on earth could it have been otherwise?” but at the time I was too far into the black abyss to see things clearly.

I had waited almost two and a half years for the inquest.  Although I had been told time and again that the inquest was just a staging post along the way and NOT the be all and end all of our fight.  I realise now that in my heart I was waiting for the inquest, waiting to face my enemy and girding up for that terrible, dreadful legal battle which would see the accused condemned and my faith in the long and costly fight vindicated.  Naively maybe, desperately (maybe) and I’d probably seen too many courtroom dramas, but it really wasn’t like that.  See my blog https://justicefornico.org/?s=down+like+waters for what it was like.  We actually had a “good” result, much better than we had been lead to believe we should hope for.

And then nothing.  We went home. My son wasn’t waiting for us.  The “victory” felt as hollow, meaningless and anguish filled as the waiting had been.

So now I know that the aftermath of the inquest is awful.  If you have recently had the inquest you’ve been waiting years for and now you’re in that terrible place please know this.  It’s normal.  It’s horrible but just for a little while it has to be like this.  You are exhausted and it’s hard to keep going.  Nothing makes sense and you find your feelings of tearing anger, frustration, guilt, blind rage, sorrow and bewilderment that this could even have happened to you and your family, very hard indeed.   While you live it I can only suggest you talk about it to people you trust who love you and write about it.  Above all, know it’s normal.   It will get better.

In the days following the inquest I wrote this poem which I haven’t posted before because I felt it was too bleak.  I didn’t want parents at an earlier stage than me to read it.  Sharing it didn’t feel responsible at the time.  Now I feel I am ready to share it.  But that is because I no longer feel like this (most days).  If you are “in the bleak” and if you are feeling that you just want to hide under the duvet, you are so very not alone.  If you tweet about it, email me about it, comment on my blog about it, know that it’s a signpost I know well, but it’s not a place you’re going to have to stay in longer than you can bear.

 

I let you down

I let you die

And now the longing clings to me

The filthy grief

That takes my time

And haunts me like a sooty grime

 

A closed up room

A boxed up life

Where once was fun and love for me

In chilly piles

Bought with such joy

Un-played with, sad and dusty toys

 

And life proceeds

So heartlessly

Taking your farther away from me

I dead the day

I can’t recall

Your smell, your touch, your eyes, your call

Nico's Photos_0041

Almost birthday boys

Today Connor Sparrowhawk should have been 21.  His mother, Sara Ryan, has written very movingly in her blog https://mydaftlife.wordpress.com/2015/11/15/nearly-turning-21-magic-and-mopping-up-crapshite/ of her plans to spend the day wrapped in the comfort of family, friends and a very large memorial quilt.  But whatever you do and however you dress it up, it’s not quite the same as the day they would have liked to have planned for Connor, I’m sure.

This is not the first time I’ve written about 21st birthdays and “almost birthday boys”.  Last June I wrote a blog on the day that should have been another young man’s birthday, another “almost birthday boy”, Thomas Rawnsley https://justicefornico.org/2015/06/07/21-today/

But in the end I can really only speak for and about my own son, Nico.  I don’t pretend to speak for Connor or for Thomas or anyone else I write about.  I don’t speak for their parents either.  I support them, but they speak for themselves and I read what they write and I listen to their words.  I find strength, truth and power in what they say.  Their compassion and kindness amazes me.

The list of “Almost Birthday boys (and birthday girls)” seems to grow ever, ever longer.  No more candles and no more cakes.  No more careful choosing of presents, shopping for that great bargain version of something they will love, no more excited tearing off of wrapping paper. No more.

We find our own ways to get through the birthdays, the special days, the dreaded days.  Sometimes we succeed quite well but the sadness at the heart of it all remains – how could it be otherwise?

We have started a new tradition of writing on helium balloons and letting them off to fly high up into the sky.  I know so strongly how much Nico would love this that I almost wish we’d also done it when he was here.

We did it once with him and it was for my mother.  He was hilarious.  He insisted that he held the balloon’s string but when the moment came he refused to let go.  Almost crying with laughter, despite all our beseeching, Nico refused to let his grandmother’s balloon fly until our begging had turned into laughter too.  Then he let her go and watched, smiling, as her balloon lifted up, up into the sky.  Of course you did Nico, you understood you needed to make us smile that day.  Of course you did my son, you always understood the untold story at the heart of things.

Your child’s birthday is one of the days when you show how much you value them.  For the “almost birthday boys” not only are there now no presents to buy and wrap but now all the parents of these young people are facing the ordeal of fighting a long, long fight for justice.

We are fighting for people to care about what has been done to our children and join us in being shocked and horrified.  Why aren’t they as upset as we are?  Why has our fighting for justice after the death of our children made people so uncomfortable?  Why are they irritated that we even still insist on mentioning them so frequently? Why do so many people view our children as forgettable, disposable and unnecessary?

When was it decided that our children had no value?

2015-04-13 13.10.12.jpg

 

 

Mexico

A luxury family hotel room in Mexico with an open plan loo in the bedroom.

What’s wrong with that sentence?

If you can work out the answer you already have a fascinating and hilarious glimpse into our holiday in Mexico.  For the record I just want to say that I don’t want to eat anything that ends in the word “molé” for quite a while.

But the sea was nice.  When I wasn’t racing out of it and up the beach to the nearest loo.  I saw my first tropical storm.  It was impressive.  I discovered two different hairstyles you can successfully achieve in 100% humidity.  Actually the beaches were fantastic and the surf was amazing.  I got rolled over a few times and encountered what I can only describe as a type of sand enema.  That might explain everything else.  I have truly been exfoliated.

I had a lot of time to think in Mexico.  Floating (sometimes) in the sea, or in the pool.  Walking on the beach, watching sunsets, people watching and a lot of watching the sea.  I did a lot of thinking.  I actually like thinking.  Then I write down the thoughts and they become another blog.

When you take people out of their normal, everyday surroundings and put them somewhere quite different, you see them in an altered clarity.  It’s as if their personalities and character traits becoming magnified, enlarged and so more visible against the very different backdrop.

In Mexico I realised that it isn’t just that we miss Nico every day.  It really isn’t just that we mourn him.  It isn’t just our grief.  It isn’t even our fight for justice.  Losing Nico and everything that has happened since then has changed us all and forever.

In Mexico I realised that my MN used to be such a happy, jokey, fun guy always playing jokes and making everyone laugh.  In Mexico I realised for the first time that this guy had gone forever.  He’s not coming back.  There is no healing which is going to replace the sad, thoughtful man I live with now with the one I used to know. He can still be funny and my god, is he still caring and kind, but it’s all more poignant now.  His pain is something that he lives with every-day, but seldom talks about.  He carries it with him, as if in his pocket.  Sometimes he gets it out and looks at it.  Often he doesn’t, but I know it’s always there.

We arrived in Mexico on their “Day of the Dead”.  In every house they make an “altar” (for lack of a more accurate word) to those who they have loved and lost and on it they put their favourite photos, lovely orange flowers, crosses (often in flowers as well) and mementos of the person including – very importantly, their favourite food and drink.  We paused at a particularly lovely one.  My daughter said “If we made one for Nico we’d have to put spicy curry, Chinese take-away and pom bears on it!”  The MN made a strange choking sound and bent over.  He was sobbing, Almost unable to stand and all he could mutter was “my son, my son”.  We just put our arms around him and held onto him for a long time.

It was then that I started to think about the changes.  About these people who I know so well, better than I know anything else in the world.  And about how Nico’s death has changed them and how I think it has changed me.

Unable to handle stress now, the MN becomes incredibly tense if anything does not go according to plan.  At any challenge or change he didn’t see coming he becomes ashy faced and sweaty, unable to deal with it to the point where he will need to walk away in order to calm down.  There doesn’t seem to be anything I can do to stop this.

I try to deal with it by instantly taking the stress on, whatever the situation is.  “Don’t worry I have this, don’t worry I can sort this out, don’t worry I will talk to them”. On and on.  It’s become my default position and it’s exhausting.

Even harder to see is the change in my daughter.  She is so terrified now of making the wrong decision that she finds it almost too difficult, too painful, too traumatic, to make any decision.   Just in case it’s the wrong one.  She is obsessive about protecting us, her remaining family, from any type of harm.  Any type of pain, upset or slight.

What should have been the relatively simple (for someone who works in travel) act of arranging a family holiday for us abroad became a ghastly circus of stress.  She tried desperately to make sure that we would have the perfect holiday, but as the process of even choosing hotels, never-mind destinations became more and more stressful with no-one able to make choices I saw her become stressed to the point of physical illness.  The burden she felt of the fear of making a wrong choice and not being able to make everyone in the family, our now tiny little family of three, happy.  Of course we didn’t help at all, unable to handle stress and reacting badly to decision making.

Then on the plane coming home I was forced to meet my own grief demon.

My daughter started to feel unwell.  She felt nauseous, faint and dizzy.  Getting to the plane and during the journey I fussed and fretted after her as if she were a poorly toddler, rather than a grown woman in her thirties.    And I was realised how utterly terrified I am of losing her.

Ten years ago she had cancer.  She’s fully recovered now but somewhere lurking in the back of my mind is that constant fear of it returning.  It’s not logical and I realised on the plane that my change is a fear, deep and gnawing, that I will lose my other child.

So in Mexico I finally acknowledged the people we have become.  The people I’m afraid we will always be now.  There will be holidays; there will be laughter, days out and good times.  The rest we will just have to live with.

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Skinning cats

I come from a long line of cat owners and lovers. I am the granddaughter, daughter and mother of cat lovers and I’m one myself.  However, my grandmother had an expression she was extremely fond of using; “There’s more than one way to skin a cat”.  On my way back from my meeting with the CQC yesterday I realised that this was exactly what we’d been doing.

We’d been skinning cats.

When Andrea Sutcliffe (Chief Inspector of Adult Social Care) invited me to go to London and meet with her to discuss my on-going blogs about the “Holes in the Net”; about the 27,000 odd people in Supported Living Homes who did not fall under the inspections of the CQC, I think my first reaction was shock. At no point did it occur to me to be nervous or that her invitation wasn’t for real.  I thought I would be going there just to listen.  Everyone who knows me pointed out how highly unlikely that was.  They were right, but I did do some listening and they did some too.

The tone for the meeting was set by the huge, warm and genuine hug which Andrea used to greet me. It was like meeting a friend you hadn’t seen for a while.  On the way to the meeting room she explained that we’d be joined by a couple of others.  Those others were Frances Smethurst (Head of Social Care Policy) and a bloke who was going to sit opposite me.

Perhaps he thought my customary greeting to strange men was “Oh my god, it’s you – that’s just too weird! I’ve just been writing about you” as I sat opposite Jonathon Beebee (Learning Disability Policy Manager). Never having met this bloke before or really even thought about him, I had specifically mentioned him in one of the “anecdotal evidence” stories I’d taken there to show the meeting.

Andrea thought I was there mainly to talk about Nico and our experience of his death while living in Supported Care. I explained that while I would be mentioning him – mainly because his was the case I knew best, what I was really there to talk about was the hundreds and thousands of desperately concerned parents and family members who had no voice of their own in that meeting.  I was there to be their voice.

It was plain that everyone in that meeting wanted the same thing – to get it right. To prevent needless worry, suffering and death.  Everyone knew what the problems were, but we were there to see if we could come up with solutions.

I began by sharing round the typed sheets I’d brought with me – the “anecdotal evidence”, the stories of Supported Living Homes shared by concerned parents. The majority of parents who had shared their stories with me didn’t want to be identified by name in the documents I took with me, but their stories had a lot of impact.  I told the meeting that I could have brought them even more stories, but some people who had contacted me just felt they weren’t able to share as they were too intimidated by the care providers.  But that too told its own sad story.  We went through the stories a little bit and I left them there for everyone to re-read and think about in their own time.

I’d like to thank everyone who contributed their own story to that list. They made very powerful reading and helped very much to focus everyone on why getting this right mattered so very much.

We got down to business. Jonathon talked about the really well-run Supported Living Homes he’s been to. It can be done well but we all agreed that good stuff is top down and it starts with great management.  The words “Supported Living” don’t have to necessarily mean “poor care” but often they do as without much carrot and naff all in the way of stick, there’s just not enough incentive for them to get it right.

The problems are varied but mostly stem from the single fact that Supported Living Homes are also “private” homes. Each person’s housing benefit pays their rent.  The landlord is often not the care provider anyway. But because everyone’s paying rent they have the same rights under law as any other private tenant and this means that the CQC have no automatic right to go into their homes uninvited, even if it’s to inspect them.  There’s no way around this one.  To try to change the law so that some private tenants are categorised differently to others only makes a different set of problems and frankly, a change of this type would use up so much time – time we don’t have spare.

As I said in the meeting “right now as we’re sitting here, somewhere in a Supported Living Home and maybe in more than one, someone is being bullied, someone is being abused, threatened, having their fingers bent back or dropped into a bath of scalding water. Someone is crying out for help that never comes.  More deaths just waiting to happen.  We haven’t got time to waste.  Someone could die while we sit in this room.  Someone could die tonight.  We have to act NOW”.

Frances explained that the CQC is already making it harder, legally far more difficult and complicated, for a registered care home to just turn itself into a Supported Living Home. The reason that a registered care home might want to change themselves into Supported Living Homes is the benefits issue.  As the government cuts back and back on disability benefits some of these registered homes are looking for other revenue streams.  If everyone living there pays their rent by their housing benefit then that’s a guaranteed revenue stream that’s unlikely to be cut.  But as soon as they change over, that means that the annual CQC inspected just stops.  And it’s not replaced and no-one is keeping an eye on that new Supported Living Home or dealing with whatever other changes might happen there in terms of care or how that care is applied.

But personal care is regulated.  And this is the big thing – this is where serious cat skinning (again apologies to every moggie in the land) can begin.

So while the tenants of a Supported Living Home have “Domiciliary Care” (i.e. they live there, sleep there and their care is there) in a “private home” (so can’t just automatically be inspected annually by the CQC) the care they receive can be scrutinised by the CQC.

If a parent or family member has a concern about the care their child, brother, sister, niece or nephew is receiving in that Supported Living Home – regardless of their status of it being their private home, they can report their concerns to the CQC.

The CQC will then contact the Supported Living Home and discuss this with them and if they feel it’s applicable and appropriate, they will ask if they can visit, to look into this further.

Obviously the home could refuse to allow the CQC to visit. But let’s face it, that would look pretty bad wouldn’t it?  If they did that the CQC would refer the matter to the local adult safeguarding department and in fact they might do that anyway – depending on the nature of the complaint.

So this is how it works. You’re unhappy about the care at the Supported Living Home. You contact the CQC and you tell them about it. They will then act on your complaint.  It might mean a visit, it might mean a letter.  It might mean that they cut the top of a can of worms and bring that right into the light of day.  It might even save a life.

In an ideal world the onus shouldn’t fall on the parents/family to have to go to the CQC to get the ball rolling, but we sure as hell don’t live in an ideal world. What matters most of all is that we break down that culture of anonymous disabled people, hidden away behind high walls, where anything can be done to them and no-one even knows.

The best persuasion is a little bit of carrot and a little bit of stick. But sometimes you have to have just a little bit of extra stick. If you knew that the CQC were going to investigate any unresolved problems that the family had with their child/sibling in your care, wouldn’t you try just a little bit harder to get it right?

So the next thing we’re going to be working on is putting together a really straightforward, easy to understand and easy to act on, version of how to contact the CQC if you have a concern with care in a Supported Living Home. Then we need to make sure that every single family who needs one, has one.   It will take a little while to get this ready and out there and I’m going to be involved.  If I can understand it, so can other families.  This will take a while – it won’t be overnight or even in a few weeks. Then we need to think of ways to make sure everyone has access to this.  It’s quite a big ask.  It’s quite a big cat we’re skinning.

But if we can get this right it might save a life. It might keep one more Nico here with us safe and still in the world.  And that’s just everything to me.

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Naming the rooms

On Friday I was contacted by a woman called Jeanette Long who works as a producer for the BBC covering social policy and mental health issues. Ahead of the publication of the Mazars report into deaths in the care of Southern Health NHS Trust she had been given my name and wanted to talk to me.

She was looking for the “human angle”; the families and the people who had been directly affected by those deaths. I told her the supported living home where Nico died was still being run by Ridgeway Partnership on the date of his death so we were not part of that group for the purpose of this report.  I explained we were told Southern Health where taking the home over 5 months before Nico died there and they had already taken over some parts of Ridgeway by then, but for us, our first official dealings with Southern Health were after his death.

Jeanette asked me to tell her about what I do, about my life in “disability justice fighting” and I replied by explaining to her that my life is like a series of different rooms. As we all know, the BBC knows how popular looking round other people’s houses is – even virtual houses, so she was interested to hear me name my rooms.

The earning room. This is a room I spend a lot of time in and it’s one of the very few rooms which has access to the outside world. The room is called “running a dance company”.  It’s from here that all the classes, courses, workshops, shows, events, merchandise, admin and marketing happens – not to mention a whole lot of music and choreography.  It sounds like a fun room, but the idea is that the end product is fun and the way to make sure that happens is by the work in this room being taken deadly seriously, using a huge amount of hard work, time and effort.  Sometimes I feel I spend too much time working and hiding in this room and I feel guilty.  Other times I worry that I don’t spend enough time in this room and I feel guilty.

The official rooms of guilt. I don’t spend nearly enough time in these rooms and frankly any time I do spend in them, I begrudge anyway.  It’s the room for washing, ironing, all housework and cooking. There’s a much smaller room called gardening directly off it which is so little used it has cobwebs over the door.  I also know that I should be spending more time in these rooms and I’m always trying to find a way to spend more time there – and almost always failing.

Justice for Nico room. Another well used room. In many ways I never leave this room, even if I’ve physically left the virtual house, the actual house or even the country.  You know the expression -“I think about you all the time”?  I think that I think about Nico so much that it now defies time.  He is in every breath I breathe.  I carry him with me everywhere I go.  But when I’m in this room – when I’m in the justice for Nico room I am actually typing, talking, phoning, writing.  I am physically doing something towards getting the various bodies that played their part in his death to acknowledge that they did, to admit to their shortcomings, to tell me they are sorry and to tell me what they’re going to do to make sure it doesn’t happen to anyone again in the future.  So I spend a lot of time in this room and I don’t begrudge a minute of the time I spend here, no matter what the hour is, and I wish I was able to spend even more time here.  I feel guilty when I’m not in this room.

Challenging/changing the CQC room.  This room is busy at the moment.  Whether it stays busy in the future will largely depend on how my meeting with Andrea Sutcliffe (Chief Inspector of Adult social care) goes next week.  With massive cuts to the CQCs budget expected shortly this is not the best time to be trying for a change so that all Supported Living Homes also fall under the CQCs jurisdiction.  However, knowing that over 27,500 young people (like Nico) live in these homes and there’s no independent inspections, no independent body for concerned family members to speak to, means that I have to keep on trying.  So I’m in this room a lot this week. It could be that I shut the door of this room and never go in again because things change and Supported Living homes fall under the CQC.  Or I might end up spending more time in this room working for a change happening in the future.

Making Families Count room. I started this room last March and at the beginning I saw it as more of a tent – a temporary structure useful for only for the short time I’d spend there.  But it became a room.  Everyone who works with me on the steering committee feels our work matters – how important Making Families Count could be.  The others are far more experienced than me and they bring that wealth of experience to each meeting.  So in the meantime I sit in the MFC room and type emails to the rest of the team and answer emails from the rest of the team and I keep the faith that we’ll get the necessary funding to role this pilot project out to the whole country and all NHS Trusts will be trained in how to support families really, really well after there’s a sudden, unexpected and tragic death in their care.

Supporting other family’s room.  This is a new room and it only began this summer.  If someone had asked me to do this a year ago I would have refused – but they wouldn’t have asked me anyway as I was far too fragile to consider doing it.  When I was first approached to support my first family I was very hesitant, afraid of getting it wrong.  I needed persuasion that I had anything to offer any other families who had lost their children in the care of others.  I knew from personal experience that if I got this wrong I could do real damage.  In the first 2 years (and particularly in the first year) it was as if I was wearing my skin the wrong way round and all my emotions touched and snagged on everything until I was a mass of cuts, bruises and pain.  The wrong word, the wrong look, no word, no look – they could all cut me deeply and were continually setting me back as I tried to move down the very hesitant path of grief.  I was afraid of doing this to others.  So far, so good is really all I can say about this new room at the moment.

Writing the blog room. You might think this is part of the Justice for Nico room, but it’s not.  It needs its own room.  Writing the blog has been perhaps the only positive thing since my beloved son’s death.  Finding my own voice, finding the confidence to share more thoughts, stories and opinions in this voice has directly led to me being able to take on almost everything else.  Writing the blog heals me.  I wish I could spend more time in this room.  I wish I had more time to write.

Supporting and loving my family.   I should spend a lot more time in this room.  I feel guilty that I don’t/can’t/choose not to.  My family is small now and made smaller by death and the decision of wider family not to support us.  There have been casualties along the way, too painful for me to write about.  Grief toys with love and makes a plaything of natural affection.  You can only do the best that you can do in the particular time and place.  You try.  You fail.  You keep on trying and you keep on hoping that it will get better, providing you keep on trying.

I think there will be more rooms in the future, new rooms, different rooms. Perhaps I will close the door on some that exist now or perhaps I will just become more comfortable about the amount of time I spend in them and will move with greater ease between them.  And perhaps I won’t.  That’s the thing with rooms.

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Knowledge Bombs

Recently I wrote a blog called “Halfway Through” about how the years building up to Nico’s inquest and the actual inquest felt like the first half of our campaign. I saw the Independent Investigation which would follow as the second half.  This second half is about to begin.

I never thought that we would be a family who lost a child, who went to an inquest or needed an investigation. Yes, we had a son who had cerebral palsy, but he was just another piece of the mix which made up our family.  We didn’t feel sorry for ourselves; we thought we were lucky because we had happy, healthy children and a loving family home.

I always knew that when Nico died my world would never be the same again, but I thought (when I ever did think about it) that this scene would play out in a warm, hushed hospital room, with all his family close around him and he would slip away to the angels, peacefully and calmly, knowing how loved he was. A chest infection I thought maybe, or possibly heart problems.  Looking back I don’t know why I could have ever thought that – as he never had either!  But I suppose it was my way of dealing with the thought that he might go before us, but I imagined him to be in his 40s or 50s by then.

But it wasn’t like that at all.

One of the things I learned from our inquest experience was that if I wanted something to be the way I wanted I needed to be far more involved and far more proactive. I mustn’t sit back and let other people do the work for me, hoping that they would do everything as I liked.

So when I was contacted by the Oxfordshire Clinical Commissioning Group to say that they were commissioning an independent review into Nico’s death I knew that I had to make sure that I had a part in this. I asked Beverley Dawkins to be part of it too.  We began initial work within weeks of the inquest verdict and I remember her saying that we shouldn’t write to the OCCG too quickly after the inquest, so our first letter was sent to them in February 2015.

Things moved forward terribly slowly and in jerks with long periods of nothing in between. We were told the panel would sit on 24 March to decide whether to go ahead with commissioning an investigation.

Beverley did her best to speed things up a little behind the scenes but it was May before we heard that we had been turned down for a Serious Case Review but they wanted to go ahead with the Independent Review. Beverley assured me not getting a Serious Case Review was good as they had a far narrower remit and you had little/no influence over who was on the review panel.  She knew of cases where the families had been disappointed and distressed by the outcome, feeling that the panel had no real knowledge and understanding of the issues of their child’s death.

The Director of Quality wanted to start work on the review as soon as possible and asked us to meet with her at the OCCG offices at the end of May. The MN and I went and so did Beverley.  There we met the director, the senior quality manager and the assistant director of nursing from NHS England.  I dreaded the meeting but it was actually so very different from my inquest experiences I wrote a blog about it “Changing Trains”.  Just being listened to and taken seriously was such a very, very big deal for me.

Then I spoke about my hopes for the investigation in a radio interview. For the first time in a long time I felt that good things were going to happen.

Then the wheels came off……………………..

It was pretty simple. The director of nursing left for another job and the senior quality manager fell ill and had to suddenly take quite a long time off work.  In their absence the director became concerned about the length of time everything was taking and sent the terms of reference to various people and asked them to tender to be the investigator for the case.

The problem was that she sent the wrong terms of reference to the wrong people and I had to just watch as the wheels came off and my hopes for the investigation fell into the ditch.

But I had learnt. Beverley rolled up her sleeves (again) and between the two of us we got it all back onto track.  BUT we could not have done this without the director being so willing, so accommodating, so wanting to get it all right.  She suggested that Beverley and I wrote new Terms of Reference for the investigation.  I thought it would be hard, but I wrote swiftly, from my heart and then Beverley tidied it, reminded me of a few things, acronym-ised it, put in the correct jargon and we sent it off.

By then our poorly quality manager was back. She added some more good stuff to the new ToR and we were good to go!  It was/is a stonker when it comes to Terms of Reference and most importantly for me, it’s what I want to say.

Everyone who was approached wanted to tender for it. We had some BIG hitters in the disability justice world to see over two sets of interviews.  People who work at this level are very, very busy (sadly).  There’s a lot of wrongs out there which these people are busy righting or at the very least, shining a bright light onto.

I was invited to be part of the interview panel and for me, interviewing was just a succession of knowledge bombs going off in my head. “Knowledge bombs” are what I’ve learned to call them – those statements which are made to you and which once you hear them, they’re a game changer.  What these people had seen and done and what they had to say were just a barrage of knowledge bombs.

Everyone was great and I would have had them all and made a “super team” (the equivalent of Batman, Spider Man and Wonder Woman all fighting disability injustice together) but this wasn’t allowed. So we chose one.

I think we have chosen well. Fresh from their work on the Saville Enquiry, HASCAS lead by Androulla Johnstone will be heading up an independent review into the death of my son, Nico Reed.

I know they will turn over every stone, look into every corner, no detail will escape them. They have dealt with unpleasant things already, this will not faze them.

I may not like everything they find. I may not agree with all their findings, but I know that it will be very, very thorough.  They have funding for an investigation lasting anything up to a year, though it’s more likely to take 7-8 months.

They will make no statement or comment and nor will Oxfordshire Clinical Commissioning Group, until the review is concluded and the results published.

But I, on the other hand, intend to drop an awful lot of knowledge bombs into this blog over the next 8 months. Because I can and because I know.

And because I’d like you to know too.

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Down like waters

I’m a pretty tough person. I’ve survived a lot in my life.  But Nico’s inquest nearly broke me.  Even now, 10 months later, I find it difficult to think about and even harder to write about.  We are still very much living with the repercussions of the inquest.

Every day, every long, long day of the Connor Sparrowhawk inquest I had planned to read every message of the live Twitter stream from the coroner’s court. It seemed like the very least that I could do to support his family and friends, but I failed.

Within a day of the inquest starting and the live twitter stream beginning I was in pieces and unable to continue. The words and expressions used in the court were just so familiar to me.  The same coroner’s court, the same coroner, just made it all come back and I was forced to retreat into checking the tweets at the end of each day and sending a daily message of support.  Not much, but all I could manage, so it had to do.

But I’ve been thinking about that coroner a lot and I wonder if he’s been thinking about us too. About all that has changed from the first day of our inquest to the final day of Connor’s inquest.

It seems to me that he has learned a lot (A LOT) from Connor’s inquest. His summing up and his verdict seemed to suggest that he’s learned a lot about our world and about Southern Health since the first day of Nico’s inquest.  I’d like to think that both Nico and Connor’s inquests have informed him, but truthfully I think it’s probably Connor’s.

But I really do have a feeling that if that coroner was to preside today over another case of a young disabled person dying in care (or next week, next month or next year) what he says and does will be far more informed. It must have been a very interesting journey for him.  I wonder if we had our inquest today – would the verdict be the same?  Does the coroner still hold Katrina Percy and Southern Health in such high esteem?

On the first day of Nico’s inquest the coroner opened the inquest by praising the work of Southern Health. In his words “they do a job that not everyone would want to do”.  The job of caring for our young people.  Our apparently un-lovable young people.  All praise Southern Health!

We sat there on the opening of Nico’s inquest; the coroner had not offered us a PIR (pre-inquest review) as he didn’t feel it necessary. Our “team” was literally myself, my partner, my daughter, Beverley Dawkins (who furiously scribbled post it notes and passed them to our young barrister) and my friend who had tried so hard to help us with Nico’s care at Barrantynes, Charlotte Sweeney.

The coroner put everyone from Southern Health in seats directly behind us. So close we could feel their breath on our necks.  We were forced to hear the senior staff member snicker at a comment made about Nico by one of their witness.  We heard their whispers and their giggles.

Our young barrister, Graeme, was working for free. He hadn’t represented a family at an inquest before and was keen to gain experience and was interested in our case.  He thought we “really had something” and was convinced that he could make the coroner see this.  He stood up after the coroner’s opening remarks and formally applied for Article 2*.  The coroner flatly turned him down.

We heard 2 witnesses that day, both from the Southern Health care team. One spoke honestly and directly.  He spoke fondly of Nico and was clearly filled with sorrow and regret.  The second witness told Graeme that they had got into the habit of giving Nico his last feed in the evening when he was in bed.  Graeme asked if they were checking on him regularly while he was having his feed.  She replied that they were in the kitchen and no, they couldn’t hear him from there. Then she made one of the many statement given by Southern Health witnesses which will stay with me forever………she said that they didn’t check on him regularly, just looked in on him whenever they “wafted down the corridor”.

At the end of the first day Graeme asked the coroner for Article 2. The coroner refused and said that he was NOT to ask him again.

Then he closed by apologising to “the parents” for having to continue the inquest as he realised we’d like it all over as soon as possible. He also apologised to Southern Health, but thought a longer inquest necessary as he wanted to call more witnesses.

But he was wrong. We didn’t want it over as soon as possible, we wanted justice.

He granted a PIR. It was conducted as a conference call between the barrister from Bevan Brittan working for Southern Health, Graeme and the coroner.  Someone from Southern Health was listening in, so was our solicitor and so were we, but we’d been told that we shouldn’t speak.  The barrister from Bevan Brittan told the coroner that he hadn’t received several of the witness statements from our side which had been sent to him, so hadn’t had a chance to read them.  But he still objected to those witnesses being called and the coroner upheld his objection (it turned out he hadn’t read the witness statements either).  We just had to listen in horror.  Graeme asked for Article 2.  The coroner turned him down.

Day two of the inquest had a different atmosphere. The courtroom looked like one of those weddings where they bride has hardly any friends or relations and over on the other side, the groom’s lot are so numerous they can hardly fit into their side of the church and so they’ve filled their side and spilled into the back of the bride’s empty seats at the back.  We were the bride’s side.

The only addition to our team from day one was my “daughter from another mother”, my own daughter’s nearly sister, who insisted on being there to support us.

On the other side there were over 10 on their legal team, plus numerous unidentified Southern Health management types, plus their many witnesses and their supporters. I didn’t count them, but it was a lot of people, enough to fill up their side.

Day two began with Graeme asking for Article 2 and being turned down.

Of the rest of the day I can only say that I found the lying very shocking. I honestly wasn’t expecting them to lay their hands on the bible and swear an oath and then lie.   I found the coaching very shocking too.  Our barrister had warned us that witness coaching by the barristers is allowed at inquests, you can even “correct” a witness and say “No, I think what you meant to say was…..” and they did this.  Southern Health had brought in a ringer, a top flight barrister for our inquest and frankly the amount of coaching he did would not have disgraced any football team.

So much of what the Southern Health witnesses said was based on knowing that the coroner wouldn’t fully grasp the finer points of disability and care. So they told him with a straight face that it wasn’t necessary for Nico to have a risk assessment for his early morning vomiting.  They told him that the staff had no training around how to deal with his vomiting but it didn’t matter. They said they had no memory of the additional funding or discussion of the funding which had been committed by the local authority for extra staffing to safeguard Nico if he was sick in the morning.  The corner didn’t comment.  He didn’t mention these things in the final summing up.

In his closing remarks at the end of day 3, the coroner upheld the doctor’s statement that if Nico had been found within 20 minutes he could have been saved. He noted that in Nico’s care plan he should have been checked every 20 minutes.  He felt sure, in spite of various conflicting statements by care staff, that this hadn’t been done.  He thought this was because there was only one staff member awake to care for all four young people.

He granted Article 2.

The coroner began Nico’s inquest with the perception that he was dealing with the death of a non-verbal, small and delicate looking young man in a wheelchair. The inquest had this perception running thought it like a thread which bound up all the proceedings, all the witness statements, all the written statements and all the coroner said.  This was a young man who was poorly in some unexplained way, a young man who would die soon anyway.  So nothing much to see here and no need to look too deeply into matters.

But perception is not reality.

Nico had hardly ever been ill a day in his life. Non-verbal doesn’t mean you can’t understand, a wheelchair doesn’t mean that you can’t think for yourself, have your own dreams and desires.  Nico was a whole person and he deserved to have his life. He was needed and loved and wanted by his family and friends.

By contrast it’s far harder to cast young Connor Sparrowhawk in the mould of “poor little Tiny Tim, waiting to die”. With his good looks, wise cracking sense of humour and big personality; it’s harder to perceive him dying young.  His disabilities were less obvious. The strength, knowledge and understanding of his family and friends  around him, both in his life and in the fight for justice made him harder to cast in the role of helpless little chap, just waiting for a merciful death.

The neglect verdict stunning and wonderful. A game changer perhaps. But all game changers come at a cost and this inquest was dearly bought by those who loved him.

On our final day, at the end of our inquest we sat in the family room, stunned, speechless.  Graeme practically danced around the room, overcome with the excitement and joy of having procured that so important Article 2 decision.  We were completely caved in and felt years older by the end of that day.  Our daughter from another mother left almost immediately, needing to get away from that place, to be able to breathe.  Our own daughter went outside into the corridor so she could cry without us seeing.  My partner and I mumbled to the camera, utterly spent, utterly exhausted.  Our support team went home.  Beverley had to leave before the verdict came in.

There was no feeling of justice. No feeling of victory.  Only the knowledge of trust betrayed and the knowledge that our beloved son could have, should have been saved.  Then we walked in the dark to the station and caught the train home.

Southern Health CEO, Katrina Percy issued no statement, there was no apology and instead we received a letter from their director of learning disabilities a month later. You might recognise her name from the LB inquest tweets – Lesley Stevens.  She wrote “whilst I was not able to be in attendance at the inquest, I am aware of the findings and of the Coroner’s verdict.  I recognise that this has been a very difficult time for you and your family and that the Trust could have done more after Nico’s death to engage in you the investigation process.  I would like to take this opportunity to say how sorry I am that this was not done at the time” 

Not sorry he died, not sorry for the lack of risk assessment, lack of therapy, lack of appropriate staff training, lack of funding (as his additional funding to safeguard him had disappeared) – no, sorry that her boss Katrina Percy had written to us saying that they had decided not to let us know how Nico had died as it would be upsetting for us to know.

All I have to say in reply to this is – Independent Investigation. Yes, we’re coming for you Southern Health.

“Let Justice roll down like water and righteousness like an ever flowing stream”.

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*Article 2 of the European Convention on Human Rights (ECHR) concerns the right to life. There are several parts to this article, which have been interpreted over time: first, the obligation not to deprive a person of life except in certain, limited circumstances; secondly, the positive duty to protect life where appropriate; and, thirdly, the duty to investigate suspicious deaths.

It must be shown that the death was caused by failures that were not only systematic but sufficiently serious as to breach the obligation of the state to maintain safe structures and rules to protect life. One of other the key requirements of an Article 2 inquest is that the authority must be aware of the failings and fail to act upon them – this is one of the criteria for separating ‘mere’ negligence from failings amounting to a breach of Article 2.

The principle behind Article 2 is that the State should take all practical steps to safeguard the safety of its citizens.

Information from Michelmore’s (solicitors) newsletter on Article 2 inquests.