From the mouth of babes

All families have a type of spoken shorthand for addressing each other. These pet names, nicknames, ways that only your family has of saying hello and goodbye become finely honed over years of use till they become as much a part of the family dynamics as the members themselves.

In our house you know who’s on the other end when someone takes a phone call, just by how they greet them. I had never particularly noticed this until my brother, who is still pretty new to our family dynamics, pointed this out to me recently. Apparently I habitually greet phone calls from my daughter with the words “Hiya babe” which actually shouldn’t come as a great surprise as this is also the phrase I use when sending her a text, an email or a letter.

I said it to her yesterday when I took her call midday. I told her about writing the blog (see but before I told her about this, I gave her another piece of news.

The news was that I’d received an email from Julie Kerry at NHS England to let me know that the group initiative I’ve been working on this year, “Making Families Count “, has been chosen as a finalist for a national award, the Kate Granger Compassionate Care Awards. For 2015 there were 98 nominees and we are now one of only 5 who have made it through to the final for the “team” category. The overall winners will be announced and the awards presented at the Health and Innovation Expo in Manchester on 3 September.

I had no idea that such awards existed. I’ve been vaguely aware of awards as I seem to remember some talk on Twitter about Southern Health awarding themselves something last year (presumably it was for “Trust who spend the most time and money fighting families in court”) but otherwise this is about as alien a world to me as every other alien world I’ve encountered since I first got on board the justice train. Though one of the things I do know about is competitions.

There are a lot of competitions in the world of dance and I’ve been to a lot of them. As a dancer, as the mum of a dancer and more recently as a dance teacher. In fact I didn’t get Julie’s email till late because I was at a dance competition which a group of my youngsters that day.

So I already know that you can be outstanding, brilliant and simply great – and still not win. It’s just the way things are. So if “the winning doesn’t matter, it’s the taking part that counts”, why does it matter that “Making Families Count” have even been nominated and have got through to the final? Simply this; it raises the profile of our initiative and helps to secure funding going forward.   So our aims and objectives of getting families better support when a member of their family dies in NHS care – of making sure that families are listened to and placed at the centre of investigations into death in care, become one giant stride closer to reality.

In order to make the idea of “Making Families Count” an ongoing part of the NHS structure we need money and we need more and more people at the top to back us. I’m sure many of you reading this can imagine how immensely different it would have been for you if you had been well supported from the moment your own journey began. If you had been treated with respect, dignity and honesty all the way. If you had seen first-hand absolute care, transparency, real concern and a desire for justice that matched your own. Well…….right now to me (and probably to you too) that almost seems like believing in fairies at the bottom of the garden, but that’s what we’re trying to achieve

. So even if we don’t win, we’re planning to use this competition as a springboard to help with funding and so helping us to get closer to our goals. So it matters a lot. In fact it’s huge.

My daughter was thrilled and excited when I gave her the news. She thought this was a BIG stepping stone towards making everything happen. She was absolutely delighted for me and, practical as ever, told me I needed to find out if we had to attend the awards ceremony and if it was black tie/long dress, as if it was, I didn’t have one and we’d still have time to get something good.

On the back of this I told her about my “Guilt and Acronyms” blog. Then she said something that just knocked me back on my heels and I just want to share it with you.

She said that I need to take what I have learned from my “Guilt and Acronyms” chat with her and incorporate it into my “Making Families Count” world too. I need to remember that it’s just so very easy to talk using jargon, acronyms and just plain words that are commonplace in your world. To use those phrases which people who work with you or share your interests use with each other every single day, till they become a short-hand way of getting the point across quickly, rather like those well used family greetings.

But if you use those same words and phrases when you are supporting bereaved families they only serve to create a wall between the family and you. If you talk using acronyms and jargon the family feel left out before you’ve even began. If you want to make a family feel supported and cared for, if you want them to feel that they are at the front and centre of the investigation, if you want them to feel healed and empowered then do not use language with them which is part of your world, but not part of theirs. It’s ever so easy to forget this.

The family you are speaking to are already hurt, confused, bewildered and they’ve already just entered into a situation which has crushed them. It’s so important that everything you say helps them. You are there to be a force for good and that means making sure that not only do they understand everything you say to them, but they feel as if nothing matters more to you than them and their situation.

My daughter reminded me of that terrible day at the hospital. That terrible room. The things that were said to us and the things that were written to us later. We understood almost nothing. It was as if everyone had stopped speaking English as we knew it.

If we win the award, or even if we don’t, we may now get sufficient funding to ensure that when it happens to the next family, someone from “Making Families Count” sits with them, supports and helps them using truthful, plain and honest words that help them, even if it’s just a little. For me that would be a lot.


Guilt and Acronyms

In the last couple of weeks people have done very important and worthy things. They’ve been writing to MPs. They’ve been speaking at and reporting on important conferences. They’ve attended the next part of their legal challenge. The hard core disability activists and justice fighters have been doing things that really matter.

While I’ve been on a beach in Antigua.

The most disability active thing I did was write my son’s name in the sand and then photograph it off-centre and badly. Other people do the graft that matters while I’m snorkelling in the Caribbean.

This is not a pity plea. Quite a few people on Twitter said I deserved a break, though I’m pretty sure they were thinking of Cornwall rather than Antigua. Frankly I think this just reinforces the fact that I’m really not part of the disability action movement. I’m a disability justice groupie.

I spent a wonderful week in wonderful Antigua with my wonderful daughter in a sea so unbelievably turquoise that even I thought it must be a fiction.   I thought about Nico exactly the same amount of times each day as I do at home and so did she. Our thoughts of him are constant. But in that white sand and turquoise water week we never actually spoke about Nico except once.

Ironically we were in the sea, treading water. I started talking about how much I know I’ve changed in the last two years. I talked about what I’ve done, who I’ve met and how what I’ve accomplished has made me feel about myself and the world around me. Then she told me her story.

She told me how left out she feels from my “new world”. She talked about how I throw out people’s names as if she ought to know who they are, but she doesn’t. I tell stories about meetings with these people and things they’ve said and written. But she doesn’t know them. She talked about my new habit of talking in acronyms; how everything now seems to have an acronym, or as she put it “talking in letters”. She told me about how that makes her feel. How it makes her feel a bit stupid, ignorant and left out – as if she ought to know and because she doesn’t, she feels as if she’s not really part of the fight for justice for Nico’s any more.

She asked me to be more sensitive and to think about this. She reminded me that not everyone lives in a world of acronyms; it isn’t normal to everyone and that sometimes using them a lot only makes people outside that world feel alienated. She asked me to remember to include her more in everything that happens as we go forward into the Investigation.

I listened to her in silence and offered no justification or argument because she’s right. The reason that I know she’s right is because I’ve been in the place she is now and frankly, I should know better.

When I first started the “Justice for Nico” campaign on Twitter I soon noticed that everyone who came forward to support me used acronyms in all their tweets. I didn’t understand any of them and I had to constantly ask what these letters meant. I think the low point for me was when I asked what “L.A.” meant and was told “Local Authority”. That made me embarrassed by my own obvious silliness – I mean, who on earth hasn’t heard of a Local Authority?

I kept tweeting to explain that I was new to this world and unfamiliar with acronyms, but the more it happened (and it happened every day), the more silly, small and ignorant I felt. All the chips that had ever been on my shoulder about leaving school young and having no qualifications came back with a vengeance. This, on top of the grief I was going through. made me feel as if I wasn’t capable of taking on Southern Health, and that I had no place in this new world of properly organised, educated and experienced, grown up, justice fighters.

And now it seemed that in my eagerness to fit in, to embrace my new role, I had fallen into the very same trap. In flashing around my new friends and my new list of acronyms I had made my own precious daughter feel left out of her own brother’s campaign. I had let my ego rule my own natural kindness.

In a world of watery, transparent greens and blues I had to face my own shortcomings and acknowledge my own lack of transparency. For if I can’t do better than others, how can I call myself a justice fighter?

Thank you my dearest daughter. I.W.D.B. (I will do better).

2015-06-19 07.31.08

One Tweeting Year

Yesterday was the end of my first Tweeting year. My one year anniversary since I set up the Justice for Nico Twitter account.

This type of thing gives you reason to pause and take stock of what has happened during that year and I thought a lot about where things were at when I first set up the account and where things have got to now. I was mightily struck not only by the massive changes on the Justice Train from then to now, but also by the personal changes I’ve gone through along the way. Astonishing changes.

Strangely – or maybe not strangely as this type of thing seems to happen to me a lot, serendipity struck again yesterday. My first Twitter anniversary was marked by a series of events which seem to go some way to summing up this last year.

The day started with someone on Twitter (I won’t say her name as I haven’t asked her permission) asking me what the justice I want looks like. She reminded me that she had asked me the same question a year ago and that I was still unable to answer the question. She pointed out was that without a clear description of what we wanted and how we hope to achieve it, without clear definable goals, it was difficult for people to support me as they wouldn’t be completely sure of what they were supporting.

At this point I hadn’t said on Twitter that it was my one year anniversary, but knowing that the same person had, by some strange chance, tweeted me a year ago to ask me the very same question and the fact I still couldn’t answer it, really got me thinking.

But I didn’t have much time to think because just after 9.00am the interview I’d recorded with BBC Oxford was broadcast. I thought I would listen to it go out live and Tweet along with it, offering comments as it went out on air. This didn’t go as well as I hoped for as my computer kept freezing and I couldn’t get my tweets out fast enough – but I still managed to comment on a few of the comments I made in the interview (which is pretty strange if you think about it)!

If you’d like to listen to the interview it’s on BBC Catch up for the next month. Follow this link and the interview begins at 2 hours 6 minutes. There is quite 15 minutes of me being interviewed and then a short, excellent interview with Beverley Dawkins to end with. You can find the interview by following this link:

Apart from sounding like “a posh chipmunk” on the radio (according to my daughter) as you listen to the interview you’ll also notice a certain amount of woffling answers from me, almost politicians answers, where I seem to be saying an awful lot, but am not actually giving much away in terms of real information. This is because, prior to the interview, I was advised to be careful with my answers and not to allow myself to make any statements which might either be seen as commenting on the scope of the investigation or be seen to pre-judge the outcome. Sounded easy enough but I can tell you, when you’re sitting in the room being interviewed and you have no script and no prior knowledge of what you’re going to be asked – well, some grade A woffling really was the only way that I could pad things out to some decent sounding answers without actually commenting or pre-judging like crazy!

I would say that my normal voice is more like a female Danny Dyer crossed with a Spanish pseudo posh chipmunk, if you’re interested, but try as I might – this slightly intimidating posh bird sound comes out of my mouth on the radio and now it’s happening more often I think I may just have to run with it, rather than let myself be self-conscious about it. It certainly seems to work well if the interviewer asks me something a bit more controversial – as he did. Something the interviewer said was picked up by quite a lot of people on Twitter. He asked me “Have you never just thought, just let Nico rest in peace, let’s just leave it”.

If you want to know what I replied to that, you’ll have to listen to the interview, but I can tell you that an awful lot of people on Twitter thought it was outrageous and watching all those people voicing their outrage via many, many Tweets seemed to me to be very much part of my first Twitter anniversary.

Then the interview finished, the tweeting slowed down and then I received an email.

It was the initial draft of the “Scope of Investigation” document from the Oxfordshire Clinical Commissioning Group. They needed me to go through it carefully and tell them about any amendment or additions I wanted to make. I was about to climb onto our new Justice Train in a serious way and there was no going back now.

Here’s to another year of Twitter. I can’t let myself start to think too much about what the next year might bring.

Personal 293

21 Today.

Years ago your 21st birthday was a very big deal. It signified your coming of age. You were now an adult. It was usually celebrated with a family party and a gift of significance you’d keep all your life, like a piece of nice jewellery, a good fountain pen or (if the family could stretch to it) maybe your first car.

By the time I had my 21st that didn’t really happen. By then the 21st birthday had just become an excuse for a bash with your family and friends and getting legless.

Nico’s 21st birthday was the last birthday he spent at Penhurst. He had moved a couple of years earlier into Penhurst’s young adult unit, Redwood House, and for his 21st he had two parties. Because his birthday fell on a Tuesday he had a huge bash at Redwood House, inviting all the young people who lived there and everyone who worked there – all of whom Nico saw as his friends because basically they were. The big living room at Redwood House was decorated with 21st birthday banners, balloons and streamers. First there was a pile of presents and cards for Nico to open and since opening presents was one of his favourite things (he would even happily open your presents too, such was his love of ripping open the paper and tossing it onto the floor) the opening part was almost as good as the gifts inside.

Nico chose the menu, so it was a massive Chinese take-away for everyone (Nico thought all food was improved by adding garlic and spices) followed by a disco till late. Nico had a ball, but we were not invited. Nico loved us, but he wanted this to be a party for him and all his friends, but not for us and we understood this.

We had a family party the following weekend, with a massive pile of presents and cards, which of course, Nico really enjoyed opening. We spent a load of money – (well, it was a load of money for us), and we always excused the spend level by saying “well, it isn’t like we’re going to have to buy him a car” and as Nico was so obsessed with looking as good as possible and with his labels, frankly we could have taken shares in SuperDry for that birthday! Plus lots of his other favourites, really nice men’s cologne, lots of DVDs and CDs, fun gadgets to enjoy back at Redwood House and of course, the best trainers out there. We had a mini-disco of our own –with Nico and his sister Madeleine dancing around the room like crazy people, all of us shrieking with laughter and turning the music up even louder.

Writing this down now makes me feel so odd. Yes, I’m happy to remember this time, not just Nico’s 21st birthday but all of this time, but then so desolate – almost beyond tears, because this is now just memories. We were so happy and we just didn’t know how close we were to the end of our happiness. As we were laughing, dancing and singing, but we didn’t know then that we were dancing on the edge of an abyss and that misery was coming to swallow us up.

Although I’ve tried very hard to remember the first of Nico’s birthdays after we lost him, I just can’t. I have absolutely no memory at all of that day, which was only 7 months after he died. It was a Saturday, so it’s very probable that we spent the day caring for my father and giving my brother something of a well-deserved break, which knowing him he probably didn’t take, but instead stayed with us in the house. Of course my father would not have mentioned it was Nico’s birthday, as he never mentioned him again we lost him.

My only clear memory of that day is of going upstairs to Nico’s room and finding a birthday card place on the window sill from his sister. With a broken heart she had written in his card the words of love she needed to tell him. I stood there in that silent room, holding the card I just hated that I had lost my golden boy and that my lovely girl was broken hearted and there didn’t seem to be anything I could do to heal her or my MN and certainly not myself.

Today is Thomas Rawnsley’s 21st birthday. You might not know him, but whether you do or not I would like you to join me just for a moment in wishing him a very happy 21st birthday. Or perhaps I should say, wishing it to his family.

Today Thomas ought to be tearing open his presents and excitedly opening all his cards. He ought to be laughing and dancing at his party, hugging his family and loving being the centre of attention – being 21 years old. But he isn’t going to be doing those things.

Thomas died in February. His family had done everything humanly possible to get him placed into somewhere far more suitable where Thomas would well cared for and happy. His family had done everything they possibly could to try to get the staff at the unit to take them seriously when they told them that Thomas was very ill. But no-one wanted to listen to Thomas’ family, no-one cared enough to want what was best for Thomas. He had to live somewhere he hated, somewhere that “cared” for him so badly they weren’t concerned by his obvious severe health problems. If you care for someone in the late stages of pneumonia – would you notice something was wrong? They didn’t. Even when Thomas’ mother called them repeatedly to beg them to take him to hospital, they didn’t.

Thomas should have been 21 today. But Thomas didn’t matter because he had Down’s syndrome and Autism, so he was treated, like so many young people like him are treated, without care, without humanity, without his basic rights. He was allowed to suffer and die because the laws in this country allow this to happen.

Thomas’ mother Paula asked that everyone remember Thomas and that they find a way to celebrate his life and to wish him happy birthday.

So I have, and this is it.

If you would like to know more about Thomas follow this link:

If you would like to do something to stop more of our precious young people dying needlessly like this, you can. Follow this link to support the new “LB Bill”