“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.

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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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2 Days

I remember asking my English teacher at school what the word “juxtaposition” meant and she told me it was a way of using two different and contrasting ideas so that both would be highlighted by each other. They were strong ideas apart, but put them side by side and they served to make the other more memorable.

I haven’t thought about this in some years but this morning it occurred to me that the last two days of my life have been just that. They couldn’t be much more different to each other, both in their own ways very memorable but boy, did they serve to contrast and highlight each other.

On Thursday I went to Manchester to the NHS Health and Care Innovation Expo. The group that I’ve been working with this year “Making Families Count” were finalists in the Kate Granger award for Compassionate Care. Just to make sure you don’t fast forward through the next part of this blog to find out – no, we didn’t win. We were runners up to an excellent children’s cancer initiative in West Sussex, Harvey’s Gang.

It was my first time at anything like this and the closest I think I’ve ever been something on this scale was when my daughter and I went to the BBC Good Food Bakes. The whole building was laid out in such a similar fashion that I was almost expecting to hear Mary Berry’s dulcet tones resonating from a distant “stage area”, but instead I was baffled and buffeted by huge crowds and hundreds of stands promoting heart monitors, alternative therapies, patient events, lectures and seminars of all descriptions. It might have looked like Good Food Bakes, but it was very, very different.

The only thing I really wanted to see (apart from the awards ceremony of course) was the seminar on the future of care of people with learning disabilities, which I missed as for most of my time there I didn’t have to clue where I was, where I was going or what I was meant to be doing when I got there!

The photos make me look relaxed, confident, happy and smiling but that really wasn’t the way I felt (note to self, must wear flats next time). I was out of my depth and in a strange and foreign land. I clung onto the rest of my team and went where they went and did what they did. I had no choice but to be extremely “close” to them in the awards area, as the seating was do tightly packed together they seemed to have been expecting an audience of very thin people with no arms.

OK, so we didn’t win, but hundreds of people heard the story of “Making Families Count”, how we came to be and what we hope to do in the future and we had lots of great feedback, some of which will hopefully turn into funding so we can reach even more people across the NHS. Treating families with compassion, care and outstandingly good attention after a death in care isn’t a jolly subject and our photos were most definitely not as cute as the winners were, but as you can imagine, it’s a subject I’m pretty evangelical about.   So we’ll get there, and in the meantime I’m very grateful and proud to have been finalists.

I got to spend the day as a real “grown up”. I talked and was listened to, people were interested in my ideas and I felt valued. I felt like someone worth listening to. I walked with my head high. I came away from the day exhausted but very positive.

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The next day, Friday, was the day that we packed up my childhood home and moved my brother into his first ever independent flat. I have no doubt that many people of my age have the experience of having to pack up, clean and sell their childhood home – their parent’s home. I’m sure that many find it difficult. So what is it like to pack up and clean a childhood home full of traumatic memories, full of pain and anger and issues which now will forever remain unresolved?

Well, it’s not great.

It wasn’t supposed to be about me anyway. This was all about supporting my brother on this desperately difficult day for him. He had moved into that house as a child and now as a 60 year old man he was moving out and moving into his own home for the first time. His support team for the move was me, my MN and our lovely daughter, plus 4 of his friends from the church. We were all needed. It’s a big house with a LOT of rooms. I took on the role of tea/coffee maker and cleaner. The tea and coffee part was pretty easy; the cleaning part was not.

All the cleaning gave me probably a bit too much time to think. While chaos and constant movement raged around me, I grimly moved from room to room dealing with the dust of ages. After lunch my daughter joined me, doing battle with the ancient hoover. We could only guess at when some of the carpets were last hoovered as not all the house has been lived in for some years. Finally I broke down in tears, overcome by the strength of emotion that having to go into each corner of each room was creating.

I struggled to explain to my daughter why I was so upset. She thought it was because I was finally leaving the house forever, but it wasn’t that. I told her that I was overcome by the feelings of sadness and regret for all that had happened in that house. Regret that I couldn’t protect those I loved, not even protect myself. Regret for all the misery I had caused and all the frightful scenes that had played out there. I sobbed as I told her how my mother had arrived to live in that house so very happy, so delighted to have her dream house, so full of hopes and dreams for the wonderful life we were going to have there and how dreadfully sad I was for her thinking about the reality.

She heard me out and then gently started telling me stories of when she had lived there. All the happy children stories of her wonderful life in her grandparent’s house and particularly of the constant love and loveliness that was my mother, her beloved grandmother. She showed me places where she and Nico had shared fun, love, laughter and happy family times. For her, every room held a memory of her grandmother’s love, wisdom and support. Every room was that safe and loving childhood which had her grandmother, grandfather and loving uncle had helped to give her, standing strong with her against whatever the world might bring.

And I realised that there is more than one version of the truth. My unhappy childhood had faded away with each change of wallpaper and had been replaced by the very happy childhood that my own children shared there. Nico adored every moment he spent in that house and so did my daughter. I saw the house for the first time through her eyes and I realised then that the walls of that house held far, far more than just one story.

At the end of the day we met the new family who have bought the house. Dad, mum and their two little children; a boy and a girl. They were so thrilled and excited to have arrived in their dream home and I watched the little girl run into the beautiful garden which would be such a big part of her childhood now.

We closed the door behind us for the final time. I heard the page turn and the next chapter for this house had begun.

From Little Acorns

One of the strangest things for me about writing a blog (perhaps because I’m still fairly new to it) is that while it almost feels as if I’m writing a letter, you have no idea who you’re sending that letter to.

Someone asked me recently if I have someone in my mind when I’m writing, who the “typical reader” of my blog is and the answer is no. From the feedback I’ve received I’ve realised that they are all sorts of people. Yes, some of them are involved in disability in some way, but a lot aren’t. In fact I find the variety of my reader base fascinating and it keeps me on my toes, stops me from being complacent. It reminds me that I can’t get away with just writing letters to myself!

In spite of this I have never really imagined that anyone with any degree of “power” would be reading my blog. To put it bluntly, I thought they had better things to do. But apparently, someone, somewhere who has the power to make change for the better is reading my blog. I think that is excellent news.

On Friday 21 August I wrote “Holes in the Net” https://justicefornico.org/2015/08/21/a-week-of-blogs-holes-in-the-net/ and on Monday 24 August I received an invitation from the CQC to meet with them. More correctly I received an email from Andrea Sutcliffe’s PA, (Chief Inspector of Adult Social Care) inviting me to meet with Andrea Sutcliffe and the CQC’s Head of Policy Frances Smethurst.

“Well, blow me down, I didn’t see that one coming” is what I thought (feel free to slightly adjust that statement so it uses language more typical to me if you prefer).

Andrea Sutcliffe is a very busy woman. Unsurprisingly. She therefore can’t meet me until October and the only date we all had free was 29 October, so that’s when we’ll be meeting. I’m really pleased to have this opportunity to see her and talk with her, though I suspect my real role in the meeting will be to listen and learn.

I don’t think for one moment that they’re going to turn round to me and say “because of your blog we’ve decided to completely change our policy and from now on we’ll be inspecting every supported living home”. The reality is that this will be at best, the first in a series of meetings as she tries to get to grips with this terrible gap in the law. Right now no-one is going to want to make any kind of changes to what the CQC can do and where they can inspect if it’s going to cost more money (which I suspect it would), but I’m still hoping that we’ll be able to have a acknowledging this need for change and talk together about some viable possibilities for how it could happen.

Worst case scenario is that this is just a PR exercise designed to keep me quiet and them looking as if they are the good guys. But really, I don’t think it is this at all.

So I’m going to go to see them. I’m going to listen to what they have to say and I’ll take lots of notes. I’m sure I have a very great deal to learn. As I have to now presume that someone at the CQC will be reading this, they’ll know in advance now exactly what I’m hoping for from this meeting!

I don’t want to hope for too much, but I know that between now and the end of October, there will be supported living homes in which very bad things are happening and people in them desperately in need of help. So ultimately that’s why I’m going.

As they say, “mighty oaks from little acorns grow”.

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Learning to swim

In the past three years I’ve just been treading water, but now I feel as if I’m learning to swim.

Writing “a week of blogs” has been very hard, not just in terms of the actual sitting and slogging away, writing them, but also making our story so public and bearing my soul in such a truthful way. That doesn’t come naturally to me. Sharing with strangers isn’t usually my thing. Yet I’ve discovered that the combination of the writing, sharing it and the resulting support I’ve received from so many people – the majority of them total strangers, has been very empowering.

I feel as if I have been underwater, but now I’ve come up and gasped in a great lungful of air and now I can go forward again – which is just as well, as we still have a very long way to go.

I go swimming a couple of times a week. The pool belongs to one of the schools in our village and it’s free. It’s not a public pool so it’s very quiet and often there are only a couple of others and sometimes I’m the only one there. People swim lengths up and down without talking so it’s very quiet, almost silent apart from the small splashy sounds of swimming. On sunny evenings the sunlight streams in through floor to ceiling windows on one side and the light and water dance across the walls and ceiling. I swim slowly. Slow length after slow length and as I dip along in the cool, clean water it gives me time to think. I write whole blogs in my head as I swim and they’re always so much better than they are when I get home afterwards and try to write them down.

As I swam, this is what I was thinking last night.

Three years. It sounds like such a long time. What have I learnt in that time? Actually I’ve learnt a huge amount and I’d like to share some of it with you. This is certainly not everything I’ve learnt and I’m quite certain I’ve a lot more to learn, so perhaps I should say “this is some of what I’ve learnt so far”.

30 things I’ve learnt in the last 3 years

  1. When a death is unexpected it will hit you very, very hard.
  2. It will knock you off your feet and turn your life upside down. It will take you a very long time to recover but you will never be the same person again. .
  3. You will be traumatised by the loss. You will have signs and symptoms of post-traumatic stress. This is normal (i.e. you are not weird you are normal).
  4. If your friends are real friends they’ll stick by you for the long haul. If they don’t stick by you as the years go on, they weren’t the friends you needed and you’re better off without them for this scenario.
  5. You’ll need help.
  6. You’ll need help and you won’t know where to turn for it.
  7. You’ll need help and you won’t know where to turn for it and not knowing where to turn will make you feel as if you’re letting down the person you’ve lost and letting yourself down.
  8. THIS IS NOT TRUE.
  9. If you are still breathing and caring then you’re still fighting. Even on the days when it doesn’t feel as if you have done anything, just the fact that you’re still caring means you’re still fighting.
  10. Don’t expect everyone to care as much as you do and try not to be angry with them because they don’t care.
  11. If you want to be angry with them because they don’t care – go right ahead, they deserve it!
  12. Don’t expect support from your family. You may be one of those people who has a slightly rubbish family. If they support you, fine. If they don’t…………
  13. Try to support your immediate family but remember they are all be in as much pain as you but they’ll all show it differently, in different ways and at different times. This doesn’t mean they aren’t suffering too.
  14. Buy tissues in multi-pack boxes. You will use them all.
  15. As time goes on you’ll realise that as well as the person you’ve lost, you are also mourning for the whole life you had with them, now that it has gone.
  16. You may feel angry and bitter when you realise how much you’ve changed. Try not to be, if you have changed, it’s because you needed to.
  17. Tell people you need help. It’s not a sign of weakness. It’s a sign of strength.
  18. When you find someone who can help – LET THEM HELP. I would like to underline that one twice, but my computer doesn’t have that button, so instead I’ll say that when you find someone (or someone finds you) who can actually help you in your fight for justice and help you deal with your anguish and grief PLEASE let them do it.
  19. Remember, you are also grieving so why on earth would anyone expect you to be grief person, legal expert, self-advocate and general big-brain. You aren’t – they don’t.
  20. Don’t be afraid of being judged. Firstly, most people aren’t even thinking about you anymore, let alone judging you. They lost interest in what was happening to you about 15 months after the death. If anyone is judgemental, that’s all about them, their personal experience, the inside of their head and nothing to do with you.
  21. Do not throw any paperwork to do with the place where your loved one died away, even if it seems unimportant – you can’t always tell what’s going to be important in the future.
  22. Whenever possible – get it in writing. Keep copies. Everything you want to say to them, say it in writing (NOT on the phone). Keep copies in a safe place. Print off emails and keep copies. Then you don’t have to worry about your computer losing them.
  23. Make notes in meetings. Record meetings. Ask first (don’t record in secret or they can later say that anything on that recording can’t be used), they’ll say yes anyway and if they say no, make them give you clear answers as to why.
  24. Oh did I mention – KEEP COPIES
  25. Try to get as much good quality sleep as you can. Sleep, or the lack of it, will become a defining feature of your life.
  26. Try to eat well. Try to keep healthy; you’re going to need your health and your energy. Chocolate is NOT a health food.
  27. If you think you are going to be able to, start a social media account of your justice fight (Twitter, Facebook etc). You may find it hard work but it could lead you to people who can genuinely help and support you. For me, blogging has really helped a lot. It might help you too.
  28. Don’t let everything be about the justice fight. As time goes on make sure you also find a place and space to remember and celebrate the life of the person you’ve lost.
  29. Fighting for justice costs money. More money than you have. You’ll need to create a “fighting fund” even if all it does is pay a good solicitor at the inquest.
  30. “Winning” is largely a concept. What you want, the justice you are fighting for – all of this may change anyway on your justice journey. In the end, you cannot bring back the person you’ve lost and not all wrongs can be righted. Perhaps in the end the best you can fight for is for a lot of people knowing what was done and making sure that it won’t happen again to another family.

When I read this through again in another year, I wonder how much more I will add to it or what parts of it I’ll want to change.

Time to take a deep breathe, jump back in and start swimming.

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A week of blogs “The film of our story”

I don’t want to write a great deal here. I want the film to do the talking.

But before you watch it I want explain the background of this film and why I’ve decided to show it in public now and include it in this week’s blog posts. The film was made by film maker Julian Hendy who runs the charity “A Hundred Families” and was made to be part of the training courses by “Making Families Count”, the new NHS Pilot scheme to train NHS Trusts around the UK to support families better after there’s a sudden and traumatic death in their care.

Nico’s death was traumatic. We are still traumatised. Had Southern Health handled his death differently we might be less traumatised – but they didn’t.

I was asked not to mention the name of the Trust in this film or the name of their CEO Katrina Percy, so the film would have more longevity and could still be used as part of the training programme in years to come; years after Katrina Percy has changed jobs or Southern Health ceased to exist in their current form. Maybe neither of those things will happen but by not mentioning them I also hope that more people watching this film are able to identify with our story.

When I first saw this film I was shocked. Since Nico’s death people had been saying things to me about my appearance, but I think they were trying to be gentle. I knew I had gained a lot of weight, but seeing this film for the first time made me realise how much. I knew I had stopped bothering about my hair and make-up and generally looking like a totally different version of my usual self.   Seeing this made me realise I was just going through the motions but I couldn’t really be bothered anymore. I’m trying harder now.

I’ve called this blog “The film of our story” but that’s not really true. This is just part of our story.

The whole story is that we had a son called Nico and we loved him very much. He died and it felt that no-one cared. On the anniversary of Nico’s death I can think of no more fitting tribute to him, our love for him and our need to fight on for justice in his name than to share this film with you.

A week of blogs “Holes in the net”

We start out in life believing that wrongdoing will be punished and evil destroyed. We know good from bad and we know that if a bad thing happens there are people who will come and deal with it and make everything alright again.

As we grow older that knowledge gets dented. It starts with small deceptions, cruelties which go unpunished and in seeing the cunning and malicious thrive. But still we tell ourselves that if a really awful thing happened there would be a net to catch us, there would be people standing by to ensure that the right thing was done and we wouldn’t be left just to fall.

But what if there were holes in that net?

When a family member dies in care, or in a hospital you expect well-oiled and well used machines will spring into life, investigate and punish. It doesn’t matter who you are, rich or poor, clever or not, there’s an almost 100% chance that someone in your family will either be professionally cared for or be in a hospital at some point in your life, so this is literally something that affects us all.

If you’re worried about what’s going on in the care home or hospital you tell the Quality Care Commission. They may already have the place on their radar and will investigate further and see if it reaches their standards. If it doesn’t – worst case scenario, they may even have to recommend putting it into “Special Measures” or even closing it down. They may even want to involve the police.

So no holes there.

Oh, but there are…………………………………

If your family member is one of the 24,485 young people (thanks to Professor Chris Hatton for the statistic) who live in “Supported Living” it’s unlikely that the Quality Care Commission knows of you or knows the home you live in even exists. That’s exactly what happened to us. https://justicefornico.org/2015/02/25/secrets-and-lies/  After I wrote this blog I invited Andrea Sutcliffe, Chief Inspector of Adult Social Care for the Quality Care Commission to comment and outline their position regarding this problem. I told her I would then put her reply on my blog. So far I only have this email from her:

“I did read your blog when you first published it but will go back again and let you have some thoughts. The scope of our remit in this area is I know a source of concern and frustration for quite a few people.”

Whether it’s the CQC, a big health provider, a hospital or one of the big charities, I think it’s too easy to just throw stones and run away. If you really want change and improvement then you have to engage with them and also that means hearing their point of view – even if you don’t agree. I’d still like to hear more from the CQC’s on this situation because when you’re telling each other your opinions then you then have a conversation and with a conversation there’s possibility of making good changes. But right now nothing has changed since I wrote “Secrets and Lies” and those 24,485 young adults are still falling through the net as far as the CQC are concerned.

This matters because “Supported Living” is increasingly the preferred option for Local Authorities. For young disabled adults who can’t be cared for at home, or who want to live an independent, grown up life with support, supported living really does seem on paper to be the way forward. Everyone gets a personal budget decided by the Local Authority which meets their needs, a few of them share the house together and their personal budgets cover the cost of the support they need.

It should be a simple model which works really well, but the problem is that many of these homes are in fact owned or/and run by large organisations who run care homes throughout the UK. For them it’s very much a business. Like many poorly run businesses, they concentrate on running the business, making the sums add up and turning a profit where they can, rather than developing and sustaining a great product. They forget what really matters most – giving great customer care and satisfaction.

And that is when the problems start. That’s when our young people become the terrible statistics of avoidable death. It’s shocking to think of your son or daughter dying in a place that the Quality Care Commission has never heard of, let alone inspected – but even more shocking is how easily and often it happens.

Of course there’s more than one layer to the net. When a family member dies in care not only do the care providers have to inform the CQC (unless of course the young person died in supported living home, in which case they don’t – hence why the CQC were completely unaware of Nico’s death) but they also have to contact the local Clinical Commissioning Group.

If the Clinical Commissioning Group decide it’s needed they will then put into place something called a SIRI (Serious Incident Requiring Investigation). The purpose of this is to look into what happened and make sure that all aspects of investigating the death have been carried out properly. That the family have been well supported and involved and if necessary, changes are made to the care structure and policy of the care providers to prevent it happening again.

The NHS describes a SIRI like this “Serious incidents requiring investigation in healthcare are rare, but when they do occur, everyone must make sure that there are systematic measures in place to respond to them. These measures must protect patients and ensure that robust investigations are carried out, which result in organisations learning from serious incidents to minimise the risk of the incident happening again.”

So far, so good. But what if there’s a hole in the net?

In our case Oxfordshire CCG didn’t realise what had gone wrong with Nico’s SIRI until they revisited the paperwork ahead of meeting with us to discuss the Independent Investigation into his death.

We are lucky – we are dealing with people who care and who feel it really matters that they do their job well. They understand the meaning of “duty of candour” and the vital importance of transparency and truth. So they told us exactly what had happened and even though it shocked us, we were glad to know. It shocks me how easily this happened and how easily it might have gone undetected. It makes me wonder how many times this happens on a regular basis around the country and how many other parents are unaware that they have fallen through the net.

Southern Health informed Oxfordshire Clinical Commissioning Group that Nico had died and OCCG opened a SIRI. They then wrote to Southern Health requesting additional information and when that information arrived, they scrutinised it and were not happy with what Southern Health had told them. They felt that important information was missing, so they wrote and asked for more information. When Southern Health wrote back with their answer, OCCG still felt they were not satisfied that this answer met their criteria and so refused to sign off and close the SIRI.

However, although they were not happy with the information Southern Health had given them and the SIRI remained open, it was then filed and forgotten about and nothing was followed up.

They have been terribly upset to discover this and even more so when they discovered on meeting us what we had gone through as a result. Had they pressed Southern Health on this and followed up, would things have been different? To be honest, I really doubt it knowing Southern Health’s track record, but as this has only come to light because they are now organising Nico’s independent investigation, we can all see how easily this might never have come to light.

The net which is there to catch families like ours is fragile. Holes appear all too easily. Often they are no-one’s individual fault but if the system put into place to investigate death’s like Nico’s and support families like ours was far more joined up, holes where the joins are meant to be and often aren’t, would be easier to spot. It would be harder for a family to fall through without anyone noticing or for a much loved child to be lost without investigation.

I know that a lot of pain has been caused to individual families when the SIRI and the CQC report decides after investigation that there’s nothing more to be done and their part in the investigation is closed and over. That can be a very, very hard thing to read and to deal with. But harder still for us is knowing that the OCCG and the CQC didn’t even know what had happened to us and to Nico. It’s as if we found ourselves over a huge hole that no-one had seen and we just fell through the net.

And no-one even noticed we had gone.

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A week of blogs “What does good look like?”

In May 2011 I sat very nervously in a room crowded with strangers. Lots of people there knew each other and no-one else on my table spoke to me, they were all too busy catching up with conversations. I didn’t mind. I wasn’t there to chat with anyone, I was there to listen and to learn.

The room was large and we were seated at round tables, ten people per table. We all faced the stage and the speakers. The first speaker gave us some basic figures about PLMD (profound and multiple disabilities) to start us off with and introduced the other speakers. I dutifully wrote it all down. I also wrote down her name – “Beverley Dawkins”. It meant nothing to me at the time. How was I to know that within 18 months I would be going through hell with her at my side?

The main speaker of the day was Professor Jim Mansell. He was a most compelling speaker and hearing him speak that day was something I’ve never forgotten. I took his speech down verbatim and have referenced it many times since, including in the many meetings we had with the staff of the supported living home where Nico died, while we tried to improve the quality of care for him there. I know that Jim Mansell was a beacon for many; a man who has inspired countless people and I am only one person on that list, but one of the things he said on that day has stayed with me ever since.

“Good services cost the same as poor services. Good services are not more expensive, they’re just better”.

If we take a minute to think about that simple statement, it’s a big idea. In these times of austerity cuts, this lion of disability equality told us that it’s not about the money, it’s about how you spend it and understanding why you’re spending it that way.

“Good services are individual and person centred. They treat the family as experts and they focus on the quality of the relationships which the staff have with the person they are supporting. Good services are cost effective. The care package needs to be sustainable by the care provider. Good care begins with good management – its top down.  

It’s not difficult to tell the difference between good, well run services and poor ones. As soon as you walk through the door you’ll know the difference. There are some real give-aways with poor services; staff often don’t seem to know what to do unless they’re told and they spend too much time talking with each other as opposed to talking to the people they’re supporting. If you walk into a home where the staff are chatting to each other while they’re watching the TV and the people they support have just been put in front of the TV too, you know you have a problem.

You find care staff talking about how they support people in their care by doing things to them, not doing things with them and often they don’t even mention the idea that really they are there to enable their clients to do it for themselves. They find it quicker to just do it to them. Even those people with the most complex needs can benefit from personalised services and Local Authorities should focus on improving the range and the quality of care, particularly with adult services. So what does good service look like?” 

To answer this question, Professor Mansell was joined on the stage by James, a young man with PLMD and using an assisted communication device (a computer talker), James made it very clear to all of us what he thought good service and good care looked like.

He said “My needs are complex. I have choice over who supports me. I want to have fun. I want to be safe and secure. I need total support with everything but I want all decisions to include ME. Ask me what I want. I enjoy being with people. I like being part of my local community. This is MY life and you are here to support ME”

The good care James received was achieved in simple, obvious ways. Ways that didn’t cost anything extra and weren’t difficult to arrange. He and his parents are part of the staff selection process so James meets everyone who might be going to support him and has the chance to say whether he likes them or not. If he doesn’t, they’re not used.

His parents are treated not as “those annoying parents” but as experts in the field of James. Any new support workers are shadowed by existing support workers for as long as they think they’re needed. All personal care is tailored to be the way that James has asked it to be. His support is reviewed monthly and James and his parents are part of that review as the management thinks it’s important that no-one gets complacent and that any new changes needed are incorporated into his support.

Lastly, they never talk about James needing “care”. They talk about him needing “support”. A subtle difference, but a very important one as it shows the mind-set that they are there to enable James to have the best life he can, not to just wipe him, feed him and put him in front of the TV while they watch a programme they want to watch. 

I’m lucky. I really do know what good care looks like because Nico spent almost 17 years at Penhurst School (the last 4 in their young adult college style unit) and we were part of something wonderful. All the staff were there for one reason only, to make sure that everyone they supported there had the best, happiest, most fulfilled, interesting and healthiest life possible. The place rang with laughter, friendship and hope. The people who worked there and the people they supported were a group of good friends who enjoyed spending time together. But this could only happen because it was really well managed. Staff were not only well trained, but training was on-going and they were given clear, achievable goals and plenty of management back up. Everyone knew that they were expected to be the best of the best and they were proud of how good they were at their jobs and that their school was flagship for the rest of the UK. Everyone there knew what “good” looked like.

This week I’ve been talking a lot with Yvonne Newbold (via Twitter). She has come so close to being another hard breaking story of the mother who lost her much loved child because he was in the wrong placement with poor quality, misguided care that was harming him. But I’m happy to say that instead she has become a mother who has successfully moved her son into a far better place, where he is now happy and thriving. We’ve also been discussing what “good” looks like and in fact this was the inspiration behind my blog.

After reading Yvonne’s story I wrote to her and said that I thought one of the main differences between her son’s old placement and his new one was that in the old home the staff saw “the job” as working there and running the home. They saw the people they cared for as additional to “the job” and therefore weren’t interested (or didn’t understand they should be) in supporting them on an individual level that made each person feel most happy and safe.

In her son’s new home the staff make the people they support the most important thing. Not the paperwork or the meetings, not the budget or the cleaning or the cooking. Not driving them to their many appointments, but the people they support. They ARE the job.

It sounds so simple and obvious, as many good and true things often do, but it really all begins from excellent management. It’s top down. It begins with a CEO with a clear vision, a love for what they do and a burning desire to do it well, excellent leadership skills and a strong moral compass. That then goes down to the manager of each home and from them to every support worker. It requires understanding of their role; it requires training and re-training, awareness of new innovations, pride in your work and genuine empathy and liking for the people you are there to support.

This is what good looks like.

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