Do I look different?
I ought to look different but perhaps I just want to look different because I feel different.
Last week I took part in “Making Families Count”, the brainchild of Jan Sunman of OXFSN and Julie Kerry of NHS England, together with the filmmaker Julian Hendy of the “Hundred Families” charity. They want to develop training for everyone working in NHS Trusts and train staff to treat people who lose relatives in their care, better and with greater sensitivity.
I was incredibly nervous about going. I have never been to anything like this before and I felt completely and totally out of my depth. My two main fears was that I might cry in front of a room full of strangers and my other fear was that I would be the silly little woman that no-one knew. That I would stand out, be dressed wrong, wrong kind of voice, wrong things to say and that I would be left, sitting on a chair by myself and ignored, as others happily chatted. I didn’t sleep the night before.
It wasn’t anything like this. Yes, it certainly was a room for of strangers, but those people who organised the event – Jan and Kerry, couldn’t have been more warm and welcoming.
It was an amazing day for me. I met some people I will never forget. Listening to the stories of the other families and watching the short films about their experiences. Talking to them afterwards as well as meeting all the people who do this work – not because they’ve ever lost anyone but because they are driven by a desire to do good in the world and so they do it the very best they can.
For me meeting these people and being together with them in the room, hearing them speak and listening to the strong reaction from the people who had come to hear us………………………………..….it was as if someone had shone a big, bright light onto me. Suddenly I felt that I was not alone in the dark. I was part of something wonderful, bigger and stronger than just me. And that was a very new experience.
I didn’t feel alone in my struggle. I had a sense of others caring, wanting to know our story, wanting to support me and understand what I have been through. I felt, for the first time, that I am part of a wider community, a wider group of support. Just feeling that you are part of something is a big deal when you haven’t had that before and feeling that you have the support of a group around you is just tremendous!
You see throughout this long, long struggle for justice for my golden boy, it has really just been me alone. Without help from others (Beverley Dawkins and Charlotte Sweeney in particular) I absolutely would not have achieved what I have, but I don’t see them very often and don’t speak to them on a regular basis. Without my solicitor and barrister we could not possibly have achieved a good inquest result or the Article 2 status, but these aren’t people I can ring up for a chat when I’m feeling low.
Day after day, week after week and month after month after month it has just been me, typing and typing and thinking and planning and hoping and just doing my very best, when most of the time I haven’t had a clue what I ought to be doing and if what I’m doing is the right thing to do. I haven’t always had anyone even to discuss this with, bounce ideas off and hold me up when I feel that I just can’t go on.
So to suddenly find myself in a room full of people who wanted to hear our story and wanted to support me and help me in my fight for justice, almost took my breath away and made me feel very humble. Jan Sunman gave a wonderful speech, illustrated by the funny, dry and pointedly sharp pictures created by Sara Ryan and now familiar to everyone who follows her justice campaign.
It was difficult to sit through the short film that they had made of me talking about Nico and about what happened to us, but I always knew it would be. Strangely I didn’t find it as upsetting as I thought I would. It was more moving than upsetting.
Equally moving, and perhaps even more so as I heard them for the first time, were the other families testimonies and films, from the shocking opening recording of Len Hodkin’s mother’s murder to hearing Stephen Habgood speak after the film about his son. I will never forget Mr Habgood’s words “I’m not brave. I am broken”.
But one of the other profoundly moving things was seeing for myself how meeting these families opened the eyes and the hearts of many of the NHS people present in a most profound way.
It is all too easy for many people within the NHS to deal with bereaved families by shutting down their empathy, but making us less like themselves, less like their own families and by not allowing themselves to be in our shoes. I think they do this partly as a survival technique, so that they don’t become too involved in their work, too affected by the families they meet but I also think they do it because of fear. The fear of being wrong, being caught out in being wrong and the fear of reprisals, whether that be disciplinary or being sued, is now almost taught to them by their management as if it is an expected and normal part of their work experience.
Over the last few years in particular, the years of the slashing budget cuts, they have displaced themselves from empathy for their own convenience and in order to get through another tough day.
Meeting us and actually having us physically present in the room; listening to our voices, watching our films, made that distancing impossible for them – perhaps for some of them, for the first time in a long time. They were forced to see for themselves what is done to us by this culture of distancing. Time alone will show what lasting changes this may bring, but I have hope.
At the end of the day a woman came up to speak to me. I can’t write her name here for obvious reasons. She was lovely, friendly, approachable and easy to talk to. She said “I should have known you instantly as I can see you have your son’s lovely eyes”. I nearly lost it.
She told me that she knew we had applied to NHS England for an independent case review following my son Nico’s death. I told her that we were still waiting to hear back from them but I did have some hope of a good outcome. She left me and I ate as many of the free sandwiches as a woman could possible stuff in her face and still stay the right side of dignified.
After 10 minutes the woman returned. She asked me if she could speak to me privately and she took me down the corridor. She said that she had just made a phone call and that she had been given permission to give me some news.
And so it was that I was told, standing in the corridor outside the loos in the Hilton Hotel, Reading (which is not the place I ever thought I’d be standing when I was given life changing news), that NHS England has approved our application and will be carrying out an independent case review into my son Nico’s death.
Do I look different now? I certainly feel it.