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.