Keynotes – Jen Kilyon

Jen Kilyon

When my son first ended up in a psychiatric unit I really did feel I was doing the best thing, I didn’t know what else to do. I’ll describe to you the first time he was in a psychiatric ward; this is what happened. I’d never been on a psychiatric ward before and I didn’t know anything about them. Imagine, you go to visit someone for the first time in a hospital, you take something that they like. You think of their favourite thing and take it, that’s the natural thing to do. So, I took a bunch of bananas and a bottle of mango lassi (that’s a yoghurt thing), his favourite things. I get there at 2 o’clock in the afternoon because that was visiting time. So, I get there and we’re in this visitor’s room, it feels like a strange alien place to me, but that’s where we were. He didn’t really look like himself but I didn’t know what to expect, so I gave him the bunch of bananas and the big bottle of mango lassi. He demolished the bananas one after the other and drank this whole mango lassi. I said “you seem pretty hungry, what did you have for your lunch”? And I got this “I can’t go into that dining room, I’m too scared”, so I said “what did you have for your breakfast”? “Nothing”. So, when I got there at 2 o’clock he’d had nothing to eat and nobody appeared to know. I thought “this is a hospital this feels a bit strange” so I said “I’m just going to see if I can chat with somebody”.

Jen Kylion

To find somebody that knew him, he hadn’t even been there for 24 hours, felt odd. Nobody knew he hadn’t had anything to eat and I thought “I must try and get him out of here, this can’t be right, he can’t just not eat”, he loved his food and he ate what I gave him. We chatted a bit more and me and his Dad went home, very heavy hearted and we thought “what have we done? How did this happen? We’ve got to find a way out of this, let’s see if we can change our minds. It wasn’t our decision anyway but let’s see what we can do about it”. We’d been home for about half an hour and we were thinking “what can we do” (this was a Saturday) “it’s a weekend, we’ll phone the doctor on Monday and see if we can find a way to get him out of there”. Then the phone rang, it was my son, at the bus station. I said “Hang on, how have you got there? You were in the hospital” He didn’t really explain he said “I just need to come home, I’ve decided I want to go camping in the mountains of Mourne” (anybody here know van Morrison who talks about the mountains of Mourne)?

It was somewhere he’d always wanted to go. He said “I just need to go camping in the mountains of Mourne I know I’ll feel better if I do that. If I can just get some of my stuff together and you take me to somewhere where I can get a bus or a boat to the mountains”. He gave me ideas of what he wanted for his favourite meal, I said I’d be ok and I’d get help for him there. I phoned the hospital to tell them that my son is at the bus station and what should we do. That was my first mistake, we should have just got him and got out of there but you think, being good parents, I’ll do the right thing.  They said “Oh! When we’ve located him we’ll let you know, I just can’t see him at the moment” I said “No, he’s at the bus station” They said “We will call you back once we’ve located him” and I put the phone down. At that moment I knew we were not dealing with reality.

The unreal bit was the psychiatric ward that were telling me they were going to look for my son when I’d just told them where he was! I wrote about this under a pseudonym in the book that Irene mentioned that I’d edited. I call this chapter “Institutionalised Madness” because it seemed to me that the institution was not in touch with the world that I knew and that my son was in. To cut a very long story short, they called me back after half an hour and said “The security staff are still searching the grounds and we’ll get back to you soon”. I said “he’s in the car with his Dad, he’s just come home to have a cup of tea and we’ll talk about what to do next”. They said “If you let him set foot inside your house, you’ll be contravening section (whatever it was) of the mental health act and we’ll send the police out”. I just thought “we are dealing with mad people!” If he had been able to come home and have a cup of tea we could have talked, we could have done things differently, I reckon it could all have been so different. But what I had to do, and this is the moment where I might cry because I get upset about this, I had to phone his Dad who was in the car with him, he stopped, trying to decide which way to go, to come home or to go to the hospital, and he had to say to my son “Do you trust us?” He said “Yes” and then his Dad said “Do you believe we will always do what is right for you?” He said “Yes, I know that”.

And from that day, for more or less 15 years without a break, he was detained under the mental health act in many different institutions. Most of them didn’t do anything to work with us as a family, to listen to us or to listen to my son. Each time he went somewhere new they would say “when we’ve got the medication right, then we’ll be able to do this or this or this”. And each time I saw someone begin to unravel more and more and more and get more and more angry, more and more frustrated and in more and greater despair with no hope that he would ever have a life. He became more and more angry with me because he could see that I had some power but what he couldn’t see was that I didn’t have the power to change the mental health act. I couldn’t convince other people for a long, long time that there were other ways of doing things. And the number of times he would scream at me when I went to visit him “why did you let them do this to me? Why did you let them put me in prison”? Because that’s what it felt like to him. 

Most of the time I didn’t have an answer, I tried to explain but it was difficult. So, there you can see the bond, the love, the trust that was there over those years, was broken. We know that trust is so important. I was in despair a lot of the time. It had a huge impact on the whole of the family and I know that this happens to so many families. It can split families apart because it can take over your life, you can’t see a way forward. You try your best and when you know things aren’t right you know that abuse is taking place and you don’t know how to stop it. What I learnt over the years was sadly that the more I tried to negotiate, which led to seeing advocacy services  and eventually driven to having to make formal complaints that sadly, things seemed to get worse not better It didn’t improve anything and I could see the services defensive practices take over and I was seen as the difficult one, the one that didn’t understand their ways of working, the one that was always complaining. I learned in the end not to complain, that it didn’t help. I had to learn and was actually advised by two people that I did respect, I was told “don’t keep asking about the medication, he’ll never get out if you keep going on about that”. These are good people and they were right; they knew that. I felt I had to zip my mouth and not ask why he was on such huge doses of medication. That was so hard for me but I also learnt that I had become so angry myself and so traumatised through all of this and so had my family.

My daughter, I felt had become, not estranged but she didn’t know how to be with me and it caused a family breakup in the end. I realised that I had to find for myself a different way, a way not to be “Mrs. Angry”, not to be the mother that was never going to be satisfied. I had to find a different way of being with myself and I had to find more like-minded people. This is how I ended up here on this stage, it was through organisations like ISPS, through finding out about open dialogue and becoming part of the network. Knowing that there were different ways of doing things, that it was possible to work with people in extreme states without using medication knowing that that was possible and trying to promote those ways of working became my salvation, it became part of my healing.

It was the way I leant to be better with myself because I could see everything that had happened and the way I was so distressed and despondent with what had happened to Tom, that I pushed people away. I pushed friends away, I pushed family members away and I certainly pushed away many people working in the mental health system, who could have helped me and who could have been on my side. It took me a long time to realise that the trauma that my son was going through, I’d been more than just touched by it sometimes I’d been taken over by it. I was so overwhelmed by that trauma that I couldn’t live my own life, couldn’t do the things I knew would help me. I had to find a new way of being. So how am I here today? I’m not looking at my phone all the time to find out what’s happened to my son, has he “absconded” again? Has he been brought back by the police or other things that were happening? I think there were several tipping points, as Brenda said. I’d known about open dialogue for a long time, since the Madrid Conference in 2005.

I went to a brilliant workshop there and some of the people in this room now may have been running that workshop I can’t remember. It was a four-hour long workshop and it was conducted like an open dialogue session. The people that were doing it were in a circle, talking to each other and reflecting on their work and how it works in that dialogical way. I can remember sitting there and thinking “It’s so obvious! Why aren’t we doing this? Why can’t everybody work in this way”? I can remember looking round the outside of the circle and many people seemed to be sitting there with their arms folded in front of them looking very serious. I can guess,  but I might be wrong, I might misread people, but they seemed to be thinking “Well this wouldn’t work where I come from”. I guess it was probably because I didn’t have what I see as their baggage about what they think does work.

I was coming at it from just a very human, straightforward perspective, that being together and talking about things in an open way is a respectful and compassionate way of working. I’m not saying it’s the only way but it’s a good way of working from the start. So, I came back with all the info and I thought I just need to tell people back in the UK about open dialogue and then we’ll all do it. It didn’t quite work that way but I still kept on, it was always there. When open dialogue became a possibility in the UK and when some trusts were trying to develop it, I was asked to write an article from a family perspective about why I thought it was important. 

In this article I wrote about some of the things I’ve described to you, not in detail, but what I call the “deep, dark years” and about how I didn’t want other people to have to go through that. That’s why I wanted to promote different ways of working even though I knew it was too late for our family. Val Jackson, who might be sitting here in this audience today, heard that and it really hit her hard and she said “No, I don’t believe it’s ever too late for any family, we can always start from where people are at”. So, we were able to do some form of open dialogue together with my son and myself. We started off using drama therapy and I think that made a big difference because if I’d said let’s go and do some therapy I think he’d have run down the road. I guess for him it felt like he had a lot of control, that he could play, that he could mess about. He could do what he wanted to do and he loved being on the stage. It had all started when he had been playing the lead role in the school production of “Oliver”. He had to go into a coffin because he worked in an undertakers in a scene and that coincided on the day his dear Nanna died. A sad story but drama had a role in his life.

I think that through the drama therapy he started the open dialogue. He was able to work through some things that were important to him. One day he might be standing here and telling you a completely different story but that’s o.k. too. Through open dialogue I learnt how to say difficult things and how to hear difficult things in a safe space. It’s so important to provide that safe space where you feel you can talk about difficult things, things that are overwhelming and that have been stuck for a long time and that really did make a difference. I believe that being able to do things like this, although it’s hard for me to do, can help me make sense of things through having to think about things and think about things over a long period of time. I also think it’s really, really important that we have more space for family members to be able to hear other people’s stories like this and to be able to tell their own stories in a way where they’re not being judged, they’re not being blamed. I always believe that families are always doing their best, and as Brenda said, it might not be the best thing for that person at that time but we always do what we believe to be the right thing at the time.