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Pamela Dix:

I think what I’m here to do this evening is to present a different kind of human face to those who are on the receiving end of both a traumatic experience and then possibly treatment that you may go through in the aftermath of that experience or series of experiences. I’m here this evening with a colleague and friend, Andy Murphy, who was the other lay representative on the guideline development committee. Just as an aside, it was a very interesting experience for us to sit there and work with professionals on this topic.

So I’m not here to talk to you about the evidence base, that’s not my specialty. I’ve had the opportunity to hear the evidence and to understand it but I come from the other end of the experience, if you like. Stuart brought me very vividly back to the 1980s, which is when my experience originated, in 1988, with the death of my brother in the Lockerbie air disaster. And I’m sure you are familiar with the pictures from Bradford. So too are we familiar with the pictures of the nose cone of the Lockerbie plane that is trotted out on every occasion that Lockerbie gets talked about again. So that’s my own particular personal experience.

I don’t feel that I’m qualified to represent the interests of everybody who will experience trauma and develop PTSD but I’m here to give you a flavour of what it’s like to be in that position. I’m also very well aware of the fact that many of you have been in that position yourselves. You will understand it from a personal as well as professional experience and it’s not that we set ourselves apart or above anybody else; I just think it’s important to acknowledge that.

In the immediate aftermath of a trauma, I’ve thought long and hard about what it is that people might need. Looking back again at the 1980s and the development of response to trauma in the lengthy period since that time, I think there’s been an incredible cultural shift within which this guideline fits very nicely. Shifting from a perspective that was entirely paternalistic, where people were told what they should feel and what they should experience and what they should accept in the aftermath of their experience. That goes across the board, whether we’re talking about trauma or about anything else.

And I had a very strong sense of what perceived needs are and what actual needs might truly be. Now these are not definitive and they’re certainly not based on any evidence. They’re based on thoughts and sharing experience with other people who’ve gone through similar experiences to mine, not only those of major disaster but of individual trauma that the person will live with in the same way as somebody will a disaster on a greater scale.

I think the sense on the outside, if you think of how people pick up a newspaper [or] talk about counselling – and you might put inverted commas around that word – what do we all mean by that? Very many of us in this room will mean something different by it and what a person picking up a newspaper would think by it is also different. Everybody out there now thinks that if there’s a major disaster everybody will be ‘counselled’ and then they are going to be fine. Somebody to make it better, somebody to take it away. There was a very strong sense, certainly of protectionism, in that early experience in the late 80s-early 90s whereby the idea was that if you removed somebody from the reality of the experience you could then somehow erase it and make it go away – if you didn’t acknowledge it, it wasn’t there.

To go back to normal, well, I’m sure many of you will recognise the old phrase – hackneyed phrase I suppose – of the new normal; once you have a particular kind of experience in your life whether that’s major, minor, traumatic or not it will change your view, change the way you are because that’s what life experiences do to us. We do not remain the same, we are not static human beings. And when a major trauma has intruded itself into life you cannot go back and erase the experience and pretend it didn’t happen.

This is what I see as a series of pretty obvious, common sense guidelines: access to information about what’s happening in the aftermath of your particular experience, openness, honesty and sensitivity on the part of the people that are dealing with you and responding to you. Non-judgemental assistance, how fantastic that is when you can work from a base in which you’re not judging the other person but how they respond to something; that you don’t consider them inadequate if they have a particular kind of response to a traumatic event. And I would very much include the question of appropriate medical advice within that; an emotional First Aid. You’ve got to enable people to go through that experience and it’s almost like emotional sticking plasters - it’s how I see emotional First Aid.

Being offered choices; what am I going to do now? What are my options? Can I talk about it; can I not talk about it? Can I go back to the place, revisit the place? Can I go to the trial of the person who attacked me? Can I visit that person in prison and try and understand what they did? All of these things are the kinds of choices we were faced with in the aftermath of Lockerbie and after many other disasters. Or whether or not you want to understand the reality of the experience to its full degree and to its full extent? What does it mean to see a dead body in terrible circumstances? What does it mean if you’re denied access to that body? What does it mean if somebody close to you has been killed? What does it mean if they have been injured and how do I want to go forward with that experience?

That’s really my main point from this slide, you have to acknowledge and go through the experience, and nobody can take it away. And the difference between the professional who’s responding to trauma and PTSD is that you know you can’t take it away. Whereas your best friend, your neighbour across the way, they want to take it away, and consequently they are often of very little value to people who are experiencing trauma` because they want you to feel better now and they want you to go back to that person they used to know. And the fact that you can’t, almost gives you a sense that you let people down.

But how do we move in from trauma to PTSD? I’m not going to talk about what that means in any kind of scientific way at all. But where do we work from when you’ve had an experience of trauma, how do we get from there to PTSD? And how does this guideline meet people’s actual needs? How are people going to be empowered by the guideline and go forward and be able to use it in their lives to assist them? How will these needs be met and who is going to meet them? For me the overriding context for the guideline is of course the scientific evidence, the base, and it’s a real triumph to be able to say something works. And believe me, when you’ve endured a whole series of things that don’t work, it is a revelation when you understand that there is something that will; or that may.

But my context, and I think Andy’s context for this guideline is the personal testimonies that you’ll find within the guideline if you read it all. These for me are the people who have dominated my thinking all the way through this process. In the guideline you’ll find a set of testimonies from people who are direct ‘experiencers’ of particular trauma and who have developed PTSD; and also testimonies from those people who found themselves the carers of those with PTSD.

I’ve just picked out some particular phrases from a number of these different testimonies because what I want people to understand is what it’s like to be on that receiving end. What is it like to sit in the chair on the other side of the desk? What is it like to walk through the GP’s door and to begin to try and explain yourself? It’s hard enough, is it not, to go in that door and explain when you’ve got an ache in your back, it’s hard enough to explain that you just don’t feel quite right so to try and explain your psychological state is incredibly challenging. I felt I was never going to be the same. When I needed help the most I was let down.

So, I haven’t deliberately chosen negative things here but this is what it is. When you have an immediate experience, say a single trauma as opposed to a build up of trauma over many years, you feel catapulted into another world; you’re no longer the same as the other people sitting around you. And when you read about things like symptoms of avoidance and dissociation and all of those kinds of things. When you feel that you understand what it is to live through those words and what they actually mean to your social well being, it’s a very different kind of thing. ‘I just wanted to explode!’ I really like that one because there’s also a very strong sense of people wanting to explode with others, that they cannot control themselves, that you feel like you’re tipping over the edge.

Moving swiftly on to what I picked out as the things that really impacted me when I read other people’s testimonies about what their negative experiences of different kinds of treatment were, and I haven’t thought about primary or secondary care, but it was always, ‘tell me about yourself.’ I can’t tell you the number of people I saw and each time they sat down and looked at me and said, ‘Now, tell me what happened to you.’ And you just want to strangle them and say, as one or two people I know in this room know very well, ‘Read the notes!’ ‘Read the notes’ because [there] should be a history somewhere so let’s have a little continuity.’

It’s not that people don’t want to tell their story necessarily, but even when you do it’s a bit exasperating when you’re doing it in those circumstances. I feel I irritated the professionals. This really stood out for me with a man whose testimony indicates that he was untreatable because he didn’t want to be treated, he didn’t want to be any better. He saw his notes and saw, ‘Mr So-and-so is resistant.’ And you think, well, maybe he is, he could be a very difficult man for all I know but I just thought that was an interesting perspective.

You feel you’ve got to get the people to like you in order [for them] to treat you well. And then the onus is again on the person with the experience to behave appropriately. I felt I had to prove that something was wrong with me; how can I prove it to you? How will you believe me? How can I demonstrate this to you? I felt I was more use to him than he was to me. This, a little bit, harks back to the old days when many people experiencing therapy of different forms felt that they were being experimented on, just as you might experiment on a guinea pig.

So what the guideline does is to tell us that things will work. Okay, we can carry on experimenting, we’ve got to go on learning but we don’t have to start at (a) all the time. And then something that really struck me that we have to bear in mind is where professionals actually vie for the cases. You must know, in the same way that journalists vie for the story, that professionals vie for the person with the most damage. ‘Let’s try and get in there.’ This person who might be treating the family of the child who exploded yesterday in the school in America, who will be seeking to get in there and we all know, from our experience, that the people who do that don’t always do so from the best of motives.

But the positives: how do people walk away from their experiences thinking, ‘I can live my life better now? I’ve been given the tools to help myself, to understand what I’m thinking, what I’m going through. ‘People gave me back a life I think is worth living.’ The central part of that quote actually said, ‘saved my life’ as well. And, ‘we had a rapport.’ What’s the trust? How can you trust this person that’s sitting there with you?

‘It was hard work.’ I kind of like this idea because a lot of it seems a bit airy-fairy, floating around and you think, ‘Mm, I’m going to sit around and talk about my experience, how’s that going to help me?’ But having a structure and understanding that there might be an end goal, can be very helpful to people. As one person put it, ‘it was a revelation. It opened a door to a new life.’ I put in brackets that that was CBT. These are individual anecdotes that have nothing to do with the evidence base but I just thought you might like to have a look at it.

A lot of my experience is of groups of people coming together to share their experience. A very close friend of ours was killed some years after Lockerbie, in a light aircraft accident and once I heard that he had been killed – he was a man who had been very close to my brother and he was very helpful after the death of my brother and really shored up a lot of the family - I couldn’t believe that he too had died in this way. But when I put the phone down from hearing that news, I don’t go to my neighbour, I don’t ring my best friend. I ring my friend whose brother was also killed in a bombing in an aircraft the year after my brother was killed and he can ask me, ‘what happened? Have they found the body? Where is he? Who’s helping his wife? Where are his children? Do they know what caused it?’ Because he knows I want to talk about the nasty stuff and that’s fine. Whereas the nice people are trying to make you feel better by not talking about the nasty stuff. So at the launch this morning, Bill, in some discussions, used the word nasty and I really like that because it is nasty and there’s no getting away from it.

So that’s what really helped me in those circumstances, not people trying to make me feel better – [but] people with the same experience. Well, there’s an awful lot of challenge in being with people with the same experience. It’s very challenging, it’s sometimes very difficult in itself but it’s incredibly rewarding and if you feel at three o’clock in the morning that you have to talk about this right now, you know the people who won’t be bored, who won’t be embarrassed and who won’t be hurt by what you want to say. That’s a fantastically rewarding thing.

Accept the new you. I think nothing could be better than that statement, really, because there is a new you and you can help control who this new you is and learn how to control it. But that’s the point, you don’t erase it, you go forward with it. We’ve all heard those phrases that people use when a person in their family dies - a child [perhaps]. I’ve had a father who numerous times has used this expression: ‘we learn to go forward but it’s like losing a leg. You limp forever.’ But you go forward into the future in a very positive way if you can.

Best of all possible worlds? Let’s understand what the problems are, accept that the problem exists and that we can do something about it. Support those who have it and indeed those who are offering the support as wel, and let’s get access. That’s my hobbyhorse, if you like; definitely, access. But I’d like to leave you with the words of one particular survivor who talked about the physical impact of her very worthwhile treatment, which is that she could freely breathe again. And yet at the same time, PTSD will always walk beside her. It’s not gone and it’s there. It’s acknowledged [and] it’s accepted; let’s try and go through it and take it with us without destroying our lives.

So for me this guideline hopefully will help all those who have yet to experience the trauma [and] will offer them something very different from what we could offer people in the past. Thank you.

Mark Brayne:

Thank you all three of you for putting several critical issues out on to the table. For those of you who have not yet read the personal testimonies in the guidelines - the full guidelines are pretty thick, they’re rather thicker than the small pamphlet that’s at the back there - the personal testimonies are pretty powerful indeed and are really worth reading; especially for the journalists among you.

I’d just really like to put it out to the floor. One of the questions I ask myself about this is how will this be reported? How will these guidelines enhance an understanding of trauma and a more intelligent reporting of trauma on the part of journalists who report the trauma? And what implications do these guidelines have for the narrative of trauma in the coverage – in the journalism? So if we can bring the discussion also round to the journalism to link it in with the clinical and the treatment response. Who’d like to start, with questions or observations?

Stephen Pilling:

I’m the co-Director of the National Collaborating Centre of Mental Health, which sponsored for NICE the production of this guideline. I can’t resist just using this opportunity to again say thank you to John, Stuart, Bill, Andy and Pam who are here today and the other people who produced the guideline.

For me the question, to try and bring it back to what Mark was saying, is that I think we have a product in the NICE guideline that stands the sort of scrutiny against the best that anybody has produced anywhere in the world. And I think we’ve done that consistently for NICE over a number of years now and the PTSD guideline is absolutely no exception. However, we have a real challenge in terms of its implementation, and in my intellectual arrogance I used to think that a headline on the front of the Guardian or the Independent was where we ought to be because then people would realise what a wonderful document we’d got. I’ve now rather switched my view to thinking that a headline on the front of the Sun, Daily Mirror or, God forbid, the Daily Mail, would be something that would have more impact.

I think there is a real issue about what role the press play in promoting implementation because one of the most powerful forces for implementation of this guideline are going to be people who’ve had the experience of Pam, Andy and others going along to the GP, going along to health professionals and saying, ‘this is what I want.’ And if we simply leave it to NICE or to the NHS to get that information over to people, it won’t happen. So I’d be interested in people’s thoughts and comments on that.

Hilde Rapp:

I work across many sectors so I haven’t got a real label. I’ve been a journalist and I’ve also been involved in what I think is relevant here, in the implementation of the National Service framework for mental health where obviously implementation was the real, real challenge. It meant really translating any guideline - developing any guidelines locally was part of that project - into a language that was accessible and meaningful to all stakeholders. To people who have themselves experienced the difficulties and whether they call themselves survivors or whether they call themselves service users or whether they call themselves people, makes a big difference I think, to how people will receive what one says to them. But there’s a message for clinicians that will be different to service managers, to journalists, to everyone. And between us we could probably work very hard together to find ways to creating a strap-line that really targets a particular audience that needs to be on board with this.

Mark Brayne:

Would any of the journalists like to comment on what they’ve heard and how this might be conveyed in a way that will make a difference to people’s understanding of trauma? David Loyn.

David Loyn:

I’m a reporter with the BBC. There is always a problem in reporting these things - well, problem - it’s a fact now that it counts as part of the emergency response to incidents and we expect them to be there. I think as Sarah said there’s always this journalistic line [that] along with the police, fire and ambulance, there are trained counsellors; as if you might send untrained counsellors! I think there’s a real danger with that and potentially there’s a real danger in understanding these guidelines - that there’s a sort of ‘one size fits all’ quite unsophisticated response to what’s happening.

If you look at the Paddington train crash, you’ve got the bereaved and survivors. The two groups don’t talk to each other, they have totally different needs. You have police, fire and ambulance who attend the incidents with completely different kinds of expectations – and journalists – who all have different psychological needs afterwards. I think in a sense, ours are the simplest because we volunteered and because temperamentally we’re quite aggressive people who seek what we need afterwards and are willing to talk very openly about the incident.

[For example] the worst thing that ever happened to me in my life - after it happened I was interviewed by a group of journalists, I wrote two thousand words to the Observer. I wrote to From Our Own Correspondent, I spent the night with the wife of someone we had to leave behind telling her the whole story and why we’d left him behind and so by the time I … three days later I’d told the story twenty or thirty times to a variety of different people; and by the time I sought help it wasn’t a very complicated issue to get myself out of.

So I think, temperamentally, journalists are very simple in all this but I just wonder whether there’s a ‘one size fits all’ group of counsellors, coming in after an incident, which the NICE guidelines fit [into] that stereotype in a way, that it’s eight or twelve sessions - which sounds like jobs for the boys to me - sixty to ninety minutes each in a particular ‘now approved’ kind of way. This, in a sense, could be moving backwards from a number of journalists believing that these things are very sophisticated; people are of different temperaments and require different kinds of intervention.

Stuart Turner:

I think we should have more controversy in this, as well. One of the things that I tried to say at the very beginning was [that] this was a guideline about PTSD; it’s not a guideline about people. I think that’s a problem. I’ve seen probably forty or fifty survivors of the Paddington train crash and you’re right. They’re all different and they all have different needs and for some of them it was very helpful to have the opportunity to talk. Some very mixed feelings come through in my recollections [as] to how they feel about the media interviews they had. Some seemed to have got very caught up in it in an almost obsessional way and it hasn’t been very helpful; others sat at home. That’s my experience; someone’s reacting to that but that’s my experience, that they got too involved in it somehow - in what was happening in the media and it wasn’t helpful they would say, to their long-term reaction.

[For] others it was probably helpful to be able to talk straightaway and to do those sorts of things. For most people, after a disaster you’re not going to get PTSD. For most people after a disaster what you need probably is the support of your friends. What you need is somewhere to be living; you need somewhere where you can eat. You need the basic essentials and you need a lot of support. Those human things are really important. Now, they’re not PTSD. Some people will go on to get PTSD. This guideline is about PTSD and it’s picking out one aspect of the way that some people respond to that sort of incident and I think that’s the difficulty. It’s hard to get to marry the scientific and the human. The human is there because it’s what we do all the time but the science is what we’re trying to get across and that’s difficult.

Mark Brayne:

I think I’d just add that my reading of the guidelines is that quite specifically they are advising against bringing in the counsellors and ‘one size fits all.’ My fear, with you David, is that the media – the Daily Mail has been mentioned in this context – might misunderstand either through ignorance or naivety or through wilful misrepresentation what these guidelines are about but they’re actually a very sophisticated set of instructions about what works and what doesn’t work.

Kate Nowlan:

[I’m a therapist from Counselling in Companies]. Well, I really agree with this ‘one size fits all’ bit. But from a clinician’s point of view, I find it quite terrifying because it seems to me that when one works with trauma, one is working as a clinician with intuition and with respect and with trust and with story telling and all sorts of things, which are not about an imposed model. And what alarms me as a clinician is that some of us who work maybe in different ways, maybe sometimes using EMDR, sometimes using cognitive but sometimes using quite other ways of working, that we are going to be marginalized and all the NHS funds are going to be put into this particular way of working. I think it’s actually quite alarming.

Jane Gilbert:

Independent psychologist, having worked in the Health Service in adult Mental Health for nearly twenty years with all kinds of difficulties. I wondered if the panel could comment on some of the ethical issues involved in randomised controlled trials for anything to do with psychological therapy? This is ground that has been well trodden before in the sense of when they did that big study on sorting out what therapies are suitable for use in the NHS. They did a whole series of studies on psychotherapy, and again they came up with CBT, and one of the things is that that’s often what receives the funding in universities. And I don’t think journalists are fully aware of the ethical implications of RCT when people are in psychological distress. I just wondered if someone would like to comment perhaps, on that as an additional point?

John Durkin:

[From Fire Stress Solutions]. I’m an ex fire-fighter. My career ended when I was injured and suffered post traumatic stress disorder and then went through the trauma of a lot of what you referred to Pam, as, if you like, an establishment control of my particular symptoms. As a result of my disillusionment and the loss of my career I undertook a psychology degree. Within weeks, I claim, my recovery was all but complete simply because I understood what had happened to me.

[I] became convinced that fire-fighter colleagues of mine could do a lot more for themselves than they were actually given credit for and maybe this is true for many people who work on the front line in whatever occupation you find yourself; that the experts have more to learn from you than you from them. That’s a personal opinion.

But in terms of journalism and reporting, one concern that I do have, and I’m going to quote this because it seems to surprise most people that I read it to. This is from the last page of the Cochrane Review: that of the eleven trials, three studies associated intervention with a positive outcome – this is the debriefing review – six studies demonstrated no difference on outcome and two showed negative outcomes in the intervention group. The two, presumably, are your study, Jonathan and another study relating to road traffic accident victims.

So if this was a boxing match, the debriefers would have won by one round and it concerns me that in reporting and interpreting just two of those studies, we have a quite unbalanced view of what is actually possible. I use the term debriefing to avoid further dispute over what that actually means. But I’m concerned that this is actually in the public domain and only one aspect of it. The critical aspect of it has been discussed.

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