Dave - Interview 34

Age at interview: 56

Brief Outline:

Dave's son, Ben, was aged 21 when he developed mental health problems. In 2003 Ben took his own life by crashing his car. Dave was devastated. He has found some help for his grief by seeing a psychiatrist and by going to Compassionate Friends.

Background:

Dave is a retired systems analyst. He is married and has one grown-up son. He had another son who died. Ethnic background/nationality: White British.

More about me...

Dave’s son, Ben, went to university, but was not happy and lost weight. Dave and his wife brought Ben home and hoped he would feel better. A university counsellor contacted them and told them that Ben needed help, so they took him to see his GP, who referred him to a psychiatrist.
 
The psychiatrist told Dave and his wife that Ben had been taking drugs which might have made him psychotic. After several months of seeing the psychiatrist Ben was discharged from the system because the doctor thought he was well.
 
Ben soon became unwell again. People heard him saying “strange things”. Dave and his wife tried to get him referred to a psychiatrist again. One day he disappeared and was found wandering on the railway line. Another day Ben hurt his hand and was taken to casualty, where Dave and his wife asked for an assessment with someone from the mental health team. Ben was seen by another psychiatrist, who recommended he be admitted to hospital.
 
Ben went into hospital as a voluntary patient. He was there for six weeks, on medication. He was then discharged under the care of a community psychiatric nurse. Although the nurse visited about 10 times over a 10 week period there did not seem to be a care plan in place. Ben’s mental health seemed to be deteriorating and so Dave and his wife managed to get an appointment with the psychiatrist for 17th March, but on 14th March 2003 Ben killed himself by driving in front of a lorry.  
 
Dave and his wife were totally shocked. Ben’s death came like a “bolt from the blue”. They had been told by the psychiatrist that Ben was in the top 10% for recovery and they had no idea that he was thinking about suicide. Ben had mentioned suicide to one of his friends but he had not discussed it with his parents. They went to see his body at the hospital, which they thought was important, but naturally found distressing.
 
The police and the coroner’s officer acted in a kind and compassionate manner. At the inquest the coroner concluded that Ben had killed himself. The Hospital Trust suggested that it might have been an accidental death, but Dave and his wife were sure that Ben’s death was due to suicide.
 
Dave and his wife put in a complaint to the Trust about the inadequate care they believed their son had received.  They felt angry about the lack of communication between the doctors and themselves and the apparent lack of communication between the community psychiatric nurse and the doctors. The Trust denied any mal practice or lack of care so the matter went to the Health Service Ombudsman.  The Ombudsman made a series of recommendations but the Trust said that they could not guarantee that the changes could be made because of a lack of resources.   
 
Since Ben’s death Dave has tried to work but has found it difficult and is not working at the moment. He finds it hard to concentrate. Dave and his wife have been shattered by events and feel isolated in their grief. Dave has seen a psychiatrist and had counselling and cognitive behavioural therapy, which he has found helpful. He and his wife have also found friendship and comfort from the group, Compassionate Friends. Dave did not find help from Survivors of Bereavement by Suicide (SOBS). He found other people’s stories too distressing.
 
Dave’s thoughts and feelings have changed a little over time. He doesn’t think about Ben every moment of the day, but the weight of his loss can suddenly hit him, and then he feels as bad as he has ever done since Ben’s death. Dave would like to talk about Ben but finds that other people expect him and his wife to have got over Ben’s death and that other people do not want to talk about Ben or about suicide.  This is upsetting and isolating.     
 
Dave and is wife continue to go to suicide prevention strategy meetings. They hope to give health professionals some insight into the terrible effect that suicide can have on a family.

After Dave’s son died in 2003 he and his wife wished the doctors had involved them more in his care. They were also angry that he was discharged from hospital without a care plan.

Looking back, how do you thing the mental health services should have dealt with everything?

They should have involved us more. They didn’t involve us enough. They dealt with Ben as a, they almost took him out of our family and dealt with him, and told us to back off and they were dealing with him. 

How old was he at the time?

Ben?

Mm.

Ben was twenty two, so.

So, were they excluding you because they saw him as an adult?

Afterwards they said that.  Yeah, they said it was confidential, confidentiality. But they were, they just hide behind that. Since he died, we put in a complaint to try and find out what had happened.  Why there such difference between what his medical notes said and what we were thinking at the time, and the treatment that someone in his position should have got.

Mm.

Under the mental health terms like, there’s the national service framework that describes what people with mental health problems should get. And all of the trust work under a system called, Care Programme Approach, which says what should be delivered.

Mm.

And it’s all based on what’s happened, in the past, to people slipping through the system and struggling and killing themselves, and not getting good treatment. And they’ve got this framework but it, they don’t implement it, and they didn’t implement it for Ben. So we looked at what should, he should have got and what he’d got, and we said, ‘This is no good.’ And we put in a complaint to the trust, and said he didn’t have a care plan, for instance. He was released on an enhanced care programme approach and he didn’t even after three months, or after six months, have a care plan.  He didn’t when he killed himself, he didn’t have a care plan.

Four years on Dave no longer thinks about his son every second but every hour. The “weight” of losing Ben can hit at any time and it’s always as bad as it ever was.

Have things changed at all over time or is it just the same?

Yes, things change. Yes, when it first happened, it’s there all the time, every second and, but that, gradually, I don’t know whether it will continue to diminish, but it does, it’s not there all the time now.  It’s there every day, it’s there every hour, but it’s not there every second. So things at times, are easier. You can do things and it not be hanging over you all the time.

But, if you’ve got the scales there, you’ve always got this weight of losing Ben.

That, that, at any time, can hit you.

And, and it’s always as bad.  When it’s there, it’s as bad as it ever was.

Dave’s relationship with his surviving son was great but not ‘easy’. It was no longer a ‘thoughtless relationship.’ Dave has to think carefully before saying or doing anything.

Would you say a little bit about how Ben’s suicide has had a huge impact on the whole family?

Yes, it’s, it’s difficult to explain, but I think it’s changed everything about our lives and how we do everything. We now, I now have to question and think about everything, almost everything I do. The change is so fundamental that before I’d just got on with my life and went to work, and did things, or didn’t do things, without really thinking about them, but now everything is highlighted. Everything is, almost everything is a decision you have to make, without being able to just drift along and do things. And that, that impact, personally, also extends to any social contact, with even people who are close to you, where, like my son, my surviving son, our relationship is great, but it’s not easy. It’s not, it’s not a thoughtless relationship, it, you’re all the time standing back saying, “Oh, after you, or, after you.” And, “What do you want for Christmas? And what do you [sighs], and how shall we do this?” And it’s difficult to make a decision; you’re always wanting to make an allowance for the other person.

The coroner's officer prepared Dave and his wife for what might happen at their son's inquest.

The coroner’s office was very helpful. They gave us information and we went over to see them before the inquest. The inquest was about six months later, but we had been over to the coroner’s court before then to talk to the coroner’s assistant.

And did the coroner’s assistant prepare you for what was going to happen?

Well, he asked us for, he would have answered any questions we’d got, but you don’t know what questions to ask.

No.

Because you, it’s the first time through it. You could ask lots, it’s like everything, you could ask lots of questions afterwards, but he would have answered anything we’d of asked him, and he, he did tell us what the procedure would be, and how it would be organised, and how we’d be at the front of the court, everyone else behind us. And so there weren’t any real surprises when we got to the inquest.

That’s good, because sometimes people say they’ve totally unprepared and haven’t had a chance to ask any questions.

But again the inquest was very difficult, we just sat sobbing all the way through it, I think.

Did you have to say anything at the inquest?

No. No, but the, the coroner kept asking us, ‘Were we okay?’ And we could ask questions, if we wanted.

So, yes, even that was sensitively held.

So, so who had to talk? Who had to give statements, the police?

The police gave statements. The driver of the lorry that Ben crashed into, he gave a statement. The friend of Ben’s who he’d sent the message to, the text message to, she had written a statement. She didn’t stand up and give a statement, but she’d given a written statement. And the coroner’s verdict was suicide. They were; killed, said he’d killed himself, that was, yeah, the word, yeah.

Dave believes that the coroner’s verdict of 'suicide' was correct. He is convinced that Ben’s death was not an accident and that the mental health trust was partly responsible.

And, how do you feel about the verdict?  Would you have preferred it to have been said it was an accident?  Or would you have preferred it to be suicide?

Oh, we were content, I was going to say happy, but we’re never happy [laughs], we were content that it was suicide, because we.

That’s what you thought.

We knew it was suicide.

So, yes, we, we wouldn’t have been, it would have been worse if the coroner had not given a verdict of suicide. That is a little bit of a, that’s a step for us that it’s accepted that Ben killed himself, because then we have to deal with why he killed himself.  And that’s what we attempted to do with the complaint, with the, the finding out about his notes, finding out about schizophrenia, finding out about treatment of people with schizophrenia.

And so are you, are you saying that if the coroner had said it was an accident, then you wouldn’t have felt that you could pursue what had happened with the Mental Health Trust?

The Mental Health Trust, when we met them on one occasion, after it had been a verdict of suicide, the chief executive of the Mental Health Trust said, “Another coroner may have given a different verdict“  So their stance all along was, it wasn’t suicide.

Yes, yes. So it was quite important for you.

It was very important for, for that step in the, in the complaint of saying to the Trust, ‘You know, you had some, you were involved in this.’ 

Even when we met the chief executive, this is after the, after three years after the ombudsman’s report had been highly critical. After the ombudsman had forced them to, in theory, make changes within the trust, the chief executive was still not accepting that anything they had done, or not done, had caused Ben’s death.

So he was still suggesting it might have been an accident, in other words?

He was saying that, he was suggesting that they, they weren’t influential in Ben killing himself.

After Ben died, Dave had cognitive behavioural therapy (CBT). He explains why he found it helpful.

Did you have any individual counselling?

I’ve had loads of stuff, because I worked for the first year, but after a year, I could no longer do my job. I couldn’t think straight. My memory isn’t as good as it was. My organisational skills and thinking things through; it doesn’t work like that, so I had to stop doing my job, and when I stopped doing my job there was an insurance policy at work that would pay me a percentage of my salary if I couldn’t do my job through ill health.

And I’ve claimed on that. And through the process of claiming through that, I’ve gone through on a private health scheme, seeing a psychiatrist, and I’ve, I’ve had counselling. I’ve had cognitive behavioural therapy sessions, which were very helpful.

Could you explain what that is?

It’s sitting talking to someone who can, …from what that person tells you, try and get you to think about things differently, not to assume things. There are, there are ways of thinking that aren’t helpful like, black and white thinking about, or mind-reading, thinking you know what someone’s thinking without questioning why they might be adopting an attitude towards you. So you might think that someone’s dealing with you [in a certain way] because you’re bereaved, when it might be the problem they’ve got that’s totally separate, you know. Someone might ignore you for what, for, for their own reason, you think it’s, so it’s not a good thing to mind-read. So there might be a dozen different ways that you can think unhelpfully to yourself.

And CBT is about changing the way you, you approach people and think about things. So I found that very helpful. I’d often say that people should have CBT as part of their education in schools perhaps.

Just to, to teach people to deal with other people in different way. And you’d get, you’d have a lot less falling out if people could understand people a bit better. It’s all communication. And communication is a cause of lots of problems.

When Ben died, Dave thought suicide was the ‘worst thing’- now he thinks the death of a child is worse than suicide. He and his wife have found Compassionate Friends very helpful.

Has anything helped you over the years?

We’ve had, fairly recently, in the last year or so, we’ve had some support from our Compassionate Friends group, that we go to once every six weeks or so. That’s a group of people who’ve lost children.

And they offer a befriending service. And really that’s what they’ve done for us, they’ve become our friends.

Would you like to say a little bit about that?

Yes, the SOBS meetings tended to be very heart rending. Very, for me, very difficult because you sit in a circle and people round the circle would say how their, the person who’d, they’d know had killed themselves. How they’d done it. And people were so raw and, descriptions of the deaths, was so emotional that I found it difficult to go to these group meetings.

Didn’t find it helpful. There are lots, when you’re bereaved, there’s lots of anger about and lots of the people at the meeting were angry.

Admittedly, when we went to the meeting, we were fairly newly bereaved so perhaps we weren’t coping at the time. It’s difficult to see yourself objectively in, in social settings. And a thing we struggle with now, I certainly struggle in, in social settings, to feel accepted in a social setting. And some of that is, is because of the suicide. That, I think the suicide causes more trouble than the, the death of the child in social circumstances because people, some people have trouble dealing with that, with the suicide thing, with the mental health thing.

Do you, can you say why you think people find it hard to talk to you about it?

Well, all I can say is, really, I know people find it hard to talk to me about it.

And I know people find it hard to, to listen when I’m talking about it, because they change the subject [laughs].

Do you like to talk about Ben? Would you like to be able to talk about him?

Yes. Not at any great length, but it would nice, at times, to just acknowledge that he existed.

Yes.

And it happened.

So that must be painful in social situations. And how is Compassionate Friends different [from SOBS]?

Well, they all know. They all know what it is to lose a child so, it’s, it’s easy to be silent in a room with people who know.

That you don’t have to explain.

But it’s difficult to explain…

So, do you still go to those meetings?

Yes. Yeah.

And what happens at a typical meeting? People just talk about what they want to talk about?

It starts, the meeting, the group we go to, I, I assume every group is different, but the group we go to, the people that run it have run it for twenty something years since their son died. And they know lots of the people; they’ve known lots of the people for a long time. But there are newly bereaved people there, and when we first went, you sit round and there’s perhaps, the meetings vary from ten to twenty people. You sit round in a circle, a sort of a circle, and you can go round the room and each person can say a few things about their bereavement if they want to. They don’t have to, but they can if they want to.

And that often happens. People usually say something. Some people get upset, and you can clearly see the diff., the length of time people have been bereaved by how they’re, how they’re functioning within the group, I think.

So I’ve found the groups very helpful, the people very friendly. No, no pressure, no questions. You’ve got, you’re at ease immediately because people have experienced similar things.
 
And when Ben first died we thought the, the suicide was the worst thing, but we now think that it’s the, the death of the child is the worst thing.
Yes.
And the suicide might be a bit of extra horribleness on top, but it’s, it doesn’t make it any worse than people who’ve just lost a child.

That’s the, the unexplainable thing, and it’s impossible to describe it to someone who hasn’t experienced it.