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.

“Heroes – every one”

One of the upsides of self-employment is that I’m very often home in the day. One of the downsides is not earning much money, but let’s face it, a lifestyle that allows you to get up later (sometimes) and watch “This Morning” can’t be all bad!

I have something of a complicated relationship with “This Morning”. I’ve watched it off and on ever since the 1980s but watching it very often involves me shouting at the tele and stomping round saying that for sure, this time, I’m definitely going to be writing to them. I never do of course.

It’s probably not the “go-to” morning programme for your typical leftie justice fighter.

But at the moment I’m watching it on Mondays because they are running a series of short pieces on it about being a mum to young people with additional needs.

Katie Price goes off to meet other mums looking after young people who are sometimes rather like her own boy Harvey, or quite different, but face similar challenges (only on lower incomes). Actually watching her with these mums and their children makes you rather like her.

She has the “thing”. The thing that all mums of disabled children just get – that thing when you walk into the room and straightaway you know how to be with the kids and their families, what to say (and not say) and it’s like the glass wall which separates you from all other mothers, their kids and the rest of the world, just isn’t there anymore.

During these short pieces on the programme, just for a few minutes our own world is centre and front on national TV and you feel a sense of shared pride in what we do in our lives and the differences that we make. The love we have for our children and the love that our beautiful children have for us.

Then it ends and Philip Scofield looks to camera and says, quite seriously; “Heroes……every one”.

Arrrrgggghhhhhhhhhhhhhhh (as I so often say on Twitter).

Apart from the annoyingly patronising aspect, which just for now we’ll just gloss over, promoting this type of cliché on a morning magazine programme really, genuinely concerns me. A great many people watching won’t know any children or young people with disabilities/ additional needs and they certainly won’t know any of their parents. As this is a totally unknown world to them, they are just going to take what Philip Scofield says at face value.

They go away from this programme thinking “aren’t those women wonderful, but how I pity them. What terribly sad lives they have looking after those challenging and almost unlovable children”.

And from there it’s really just a very short hop to “wouldn’t it be better for everyone if they weren’t around”.

One of the mother’s we’ve met through the programme (who was actually today’s mum) is the mother of two young men with severe learning disabilities. She said in her interview that she is terrified to think what will happen to the boys in the future after she is no longer able to care for them. She worries about it a very great deal.

Because of who I am and the world that I live in, my answer to that would be to say that she needs to be thinking now about how they might be able to stay on in the house which she owns and be cared for by carers appointed and trained by her, using their personal budgets to pay for it. Maybe someone else in the family who loves and cherishes them would like to become their advocate and maybe there’s even a local charity who would like to be involved. If she chooses the carers well and with very good luck and her own good judgement, then there might be a happy outcome for all.

But let’s face it; the majority of people watching are simply not going to have that response! Even if I sat on Philip Scofield’s lap to say those things they wouldn’t know what I was talking about.

So instead this programme reinforces that old, old, tired old (well I know I’m pretty tired of it) message that these women are saints and that they, their lives and their children are not like ours – thank god. We should admire them and feel sorry for them in equal measure. Obviously their children are a burden, not just to the poor families but also to us all as we’ll always have to pay for them. When they are little they can be quite sweet in a kind of “tiny Tim” (poor little sickly child, not long for this world) way, but when they get older, larger and hairier, aren’t they just best kept out of sight till they die?

Now some people reading this will already be saying “I don’t think like that and I would never think like that” and I say good for you, brilliant, fantastic. But I also think anyone reading this who doesn’t have anyone disabled or with additional needs in their lives who they love, or anyone who doesn’t work with our kids and young people – if you think the majority of people in this country don’t think this way, you are simply kidding yourself. And the worst of it is, they don’t even see anything wrong in this!

A few days after Nico died my mother’s cousin wrote to me. In her letter (and I quote) she put “although you are feeling sad now I’m sure you can see that this is very much for the best. What would have become of Nico as you and (MN) become older yourselves? For him to die before you is a kindness”.

No comment.

A week before Nico’s inquest there was a family birthday in the MN’s family and he went to the gathering. I didn’t go as I didn’t feel able to face it. When he returned I had the strong impression that he wasn’t sure he should have gone either. He said very little except to say that they really did not have a clue what we were going through.

Later, much later – long after the inquest, he told me that at this family gathering someone had said to him “Life must be much easier for you now, without Nico”.

So what I do know is that if I must have a label I know I’d much rather be a hero than a foul, self centred, uncaring, bigoted, hypocrite.

Just saying you know……….. No offence meant of course.

Halfway Through

Is halfway through a good place to be or a bad place to be?

Halfway out of darkness, half into the light.

But do you always know that you are halfway through or can you only know this looking back when it’s over?

Is even calling something “halfway” the sign of an optimist, or the sign of someone desperate to put a marker up to say that even though there is still some way to go, there’s a measureable space that’s gone and past?

I was in Oxford on Friday at a meeting for Making Families Count. We were there to discuss what we’re doing to get ready for next year. There was the usual mixture of everyone talking and lots of laughs, some moments so acutely painful, some statements that made your hair stand on end and some moments desperately sad and hilariously funny. But as I came away from the meeting it very much felt as if we were acknowledging everything we had learned from the first year; chucking out some bits and keeping other bits as we moved forward with a lot more knowledge and confidence into our next year. Not halfway by any means and in fact with a project of this kind I suspect there’ll never be a halfway.

After this meeting I had another meeting. I went to talk to one of the people who will be on the interview panel with me next week at the final interview to appoint the head of the Independent Investigation into Nico’s death. We talked about the last set of interviews, about the next one and also about what’s going on at the moment in the world of justice fighting. A world where many halfways, many endings and sadly, still too many new beginnings, are always going on.

After I left her it occurred to me that we are halfway through.

Maybe I’m wrong in that. Maybe I’ll only know for sure when I reach that vague, shapeless place which now only exists in my imagination. The place called “the end”. But it seems to me that the search for justice after Nico’s death has come in two parts. Part one was definitely the inquest. Not only the inquest itself, but the years of tortuous investigation, all the meetings, the countless emails, reading the awful statements, the hours spent writing even more awful statements. The hours, days, weeks, months and years of reading and re-reading everything written by our legal team, by their legal team and dealing with the frightful, traumatic contents of the so-called “bundles”. The crushing search to find the money to pay for representation at the inquest, the endless worry about funding and funding running out. Finding a legal team and trying to understand anything they said to us. Over and over and over. It was all part of the inquest. That was a very, very long 2 years and 4 months.

For me all of that time was part of the inquest and if the inquest was “part one” then it seems to me that the independent investigation is part two. We were told many times that no matter how much the inquest felt like the culmination of the long, long fight, almost two and half years out of our lives; in fact it wasn’t and that what came after the inquest would be every bit as important, if not even more important. I couldn’t see that or really get my head around that concept while the inquest was still on-going. The inquest felt like a many-headed beast which completely ruled my life and all my thoughts.

But now that it’s over I see more clearly that it really was just part one. It ended. Unbelievably we have waited almost a year for the Independent Investigation to begin, for part two to begin and in that time I have been very busy. Personal growth, I’ve discovered, is tiring. But it feels like another gift from Nico.

I thought the fight for justice was the last, best present I could ever give my son. But in doing it my son has in return, given me a gift so precious; a gift that I can take with me everywhere I go for the whole of the rest of my life.

He has helped me to become who I was always meant to be.

On the journey home, driving towards the train station, my taxi took a short cut through the backstreets and took me through a street where I had never been before. We hit rush hour traffic and held in a long queue of cars I could clearly read the road sign for this street; “The Slade”. A name that once would have meant nothing to me, but now meant such a lot. We inched slowly up the road in heavy traffic and slowly, slowly inched past the horrid building where Connor Sparrowhawk died. I had never been past it before and only recognised it from the news. The sight of it chilled me.

I wondered if Connor’s family ever have to pass this awful place and how they must feel if/when they do.

I thought that I will never ever again go past the house where Nico died. I know I will never again have to even enter the place which holds the house where my son cried out for help that never came. For a trusted, caring someone to save him from the death that he feared most.

Yesterday the first week of Connor’s inquest ended. One more week to go.

Halfway through.

Light up

Monday 5 October – the first day of Connor Sparrowhawk’s inquest. I decided that I would follow the live twitter feed from the inquest which was going to be posted by one of Sara Ryan’s support team and would give all of us who were not actually in the room, a window into what was happening, as it happened.

I began well, avidly following every post.

The night before I had an idea for something which I could do on Twitter which would show my support for the Ryan family. Recently I took a few pictures of votive candles in a church, candles which people had lit specifically in memory of their loved ones. I had lit one that day for Nico.

When he was younger we went into a church and when he saw the bank of votive candles burning brightly he wanted to light one too. I explained that people lit them in memory of someone they loved who they didn’t see any more. I went through a few suggestions with him for who we could light one for and he wanted to light one for Alex, who was his close friend at Penhurst School. Alex left us long before his time, a breathtakingly beautiful boy, and I knew that Nico missed him and thought of him. So we lit a candle for Alex and talked about him.

A few years later and we were in a church again, but this time we had gone there very specifically to light a candle for my mother. Nico disagreed. He thought that his grandma – queen amongst grandma’s, needed a lot of candles so she would be sure to see them. So we piled loose coins in to the slot and lit candle after candle until Nico was satisfied that his grandma could see them.

Since we lost our own shining boy, every church that we go into we routinely light a candle. When it’s a cathedral we light a candle for Nico at every votive we pass. Some UK cathedrals have had at least 20 Nico candles burning in them at the same time. He would like that.

So my idea was that I would light a candle on Twitter for Connor and for his family. A very simple, small thing to do. It wouldn’t appeal to everyone I knew. Some would find it too churchy, some would find it too twee or just not sufficiently hard-core justice fighter. But for some it would be that simple thing that they could do from the heart to show their support for Connor’s family, friends and supporters knowing that they were going to be sitting there, day after day, in that ghastly inquest.

A small light shining in a dark world. A light of hope and hope for justice.

I posted my first candle just after 9.00am, but the wonderful “Wise Grannie” from Twitter had the same idea and had posted a candle already. I posted a few more, always with the message that it was a candle shining for hope and justice and inviting people to post their own candles. A few other people starting posting candle photographs, some were really beautiful.

Then I had one of those ideas that only ever come to you when you’re not trying to think too hard. Hashtag “lightupforjustice”. So I put that on my next one. Then some more people copied the hashtag and put it on their candle photos too. Then it started catching on.

By mid-afternoon I could no longer follow the live Twitter feed from the inquest. There were just too many all-too familiar words and sentences and our own traumatic inquest of only 10 months ago was coming back and tearing me up inside.

I left the feed. I stayed with the candles.

Today is day two of Connor’s inquest and I’ve just started posting the first of my candles for the day. Candles burning for hope and for the hope of justice.

#lightupforjustice.

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Dear Sara

Dear Sara

I’m very sorry but I won’t be sitting in the coroner’s court on Monday to support you. I’ve given this a huge amount of thought but I just can’t bear to go back into that room again.

I am still in pain at the thought of that room and the memory of Nico’s inquest still holds such power. So, knowing that, what words of support and comfort can I possibly offer you?

The simple answer is – none.

I wish I could. I wish I had those words and if I did have those words I would wrap them up in gold and wrap a silk bow around them and hand them to you on a silver plate– or more realistically, I’d write them down here. If I thought that there was anything I could say which would bring you comfort I would say it – I would scream it. But what I can do is write to you from my heart and perhaps there will be some small comfort in here somewhere.

You and your family have waited 2 years and 3 months (to the day?) since that phone call shattered your world into pieces and you lost your laughing boy. Those 2 years and 3 months has been filled with trauma and horror beyond most people’s comprehension. It’s almost impossible for most people to imagine what it would be like to lose a child and then to have the might of two great megalith organisations turned on you in spite and malice. Oxfordshire County Council. Southern Health NHS Trust. Yes – I name you. I know you and I see what you have done and I do not forgive you. I am one of many.

Do you think that you can make what you have done go away? You cannot. It does not matter what cheap tricks and legal jargon you and your vast wealth can throw out in that court room. I know you already and I am one of many. But I know more than most for I have already sat in that awful room and I have seen your tricks. I have heard your lies and sugar coated deceptions.

I know how much money you spend on winning. Yes, winning. That’s all that matters to you isn’t it? Your legal team is engaged by you at vast expense to win. If during the course of the inquest you have to batter the family until they can barely hold their heads up, that’s fine. You don’t care. We are just collateral damage in your scramble to ensure that you do not lose.

Because you have so much to lose don’t you? You lose your reputation, you lose the case. I can’t think of anything else you have to lose. You lose people’s trust in you, but I’m actually not sure that you can technically lose something which is already lost. So really you don’t have that much to lose.

Whereas we – the families. We have a great deal to lose. And we have already lost so much.

When you lose your child that is a loss almost too large for your heart to bear. When you are told that you are delusional, a liar at worst and a pitiful obsessively grieving mother at best, then your heart cracks and is lost again. Southern Health NHS Trust, do you sleep well? Do you fear that all that you throw out into the world, all that you do and all that you have done to us and all that you have done and will do to the Ryan family – do you fear that it will come back over and over again to haunt you?

It will.

So Sara, my words are this. This is one part of the struggle for justice. Just one part. It’s a big part because you’ve waited a long time for it, but no matter what happens it will end and there will be life beyond it (and probably the fight will go on) even though it doesn’t feel like it now. No-one is more committed, more prepared, more ready for the fight than you, your family and your team and if they have the smallest grain of sense they will quake in their boots when they see you coming.

Anyone, any fool out there who says that the inquest is a “non-adversarial process” was clearly not in my son Nico’s inquest, and clearly is not going to be present at Connor’s inquest.

Do not fear them Sara. When you sit there you may think you can count the supporters you have around you and compared to the legal team of Southern Health they don’t seem many. But also sitting with you too will be a vast invisible army of supporters. Maybe not physically present in the room, but we will all of us be with in our hearts and in our souls and we will stay with you, come what may.

With my very best wishes

Rosi Reed (who waited 2 years and 4 months to sit in the same coroner’s court last December for the 3 day inquest of her son Nico – so I really do know). X

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