Sep 4, 2020
What is digital CBT? How does therapy work over the internet? Can it ever be as good as face-to-face? Dr Lucy Maddox hears from Dr Graham Thew and Fiona McLauchlan-Hyde about an internet-based CBT programme for PTSD. Fiona shares her experience of how this therapist-supported programme helped her through traumatic grief, and also has some helpful advice for people trying to comfort those who are bereaved.
Show Notes and Transcript
BABCP website is at www.babcp.com
CBT Register of accredited CBT therapists is at https://www.cbtregisteruk.com
BPS Top tips for psychological sessions delivered by video call for adult patients
Resource from OCD-UK on getting the most out of online CBT
Graham’s recent paper in the Cognitive Behavioural Therapist can be found on the podcast journal article page
Information from Cruse about traumatic grief
The Good Grief Trust
Lucy: Before we get started, I want to remind you about the survey which I released at the beginning of August. I really would like to know more about who is listening to these podcasts and what you would like. The link to the survey is in the show notes and it takes about five minutes to complete. If you have time to fill it in I would be really grateful.
Hello, and welcome to Let’s Talk About CBT, with me, Dr Lucy Maddox. This podcast is all about CBT, what it is, what it’s not, and how it can be useful.
Today I am exploring digital CBT. I speak to a therapist who has been researching internet based CBT programmes that are supported by a therapist, and I speak to someone who has experienced this first hand.
The particular programme that we talk about is for PTSD, which we’ve heard about before in a previous episode. In this case PTSD was related to an experience of traumatic grief.
Fiona: I think I started last September and I finished just before lockdown, actually.
Lucy: Gosh, so in a way good timing.
Fiona: Yeah, it was great timing to finish just before lockdown. It put me in a good place I think, to be able to deal with what was going on, rather than if it had been six months earlier it would have been a very different experience I think.
Lucy: It took Fiona, who is based in Oxfordshire, a long time to find this type of therapy.
Fiona: It all started six and a half years ago, when my husband died of cancer.
Lucy: I’m so sorry.
Fiona: He was diagnosed in the June, and he died in the December, and it was really horrific. He was 49, I was 42 at the time. And so it was heartbreaking and I couldn’t cope. I couldn’t cope afterwards. We had a little girl, she was seven when he died. And my world was turned upside down.
And I got help at first. But then, as with all things, life goes on around you and everyone thinks you’re fine. And I was still putting my lipstick on, so therefore everyone thought I was okay. And I felt I was getting worse and worse, and no one would believe me.
And it wasn’t until I threw all of my toys out of the pram; after having therapy through my local GP – so this was last year, last summer – sitting in my car afterwards for about an hour just sobbing, because no one believed me that I was feeling as bad as I was.
And I asked to be put in touch with TalkingSpace. And they put me forward for a trial with Oxfordshire Mental Health, and it changed my life. It absolutely changed my life. Because I was drowning and no one believed me, it was awful.
Lucy: It sounds like such a dark time.
Fiona: It was a really dark time. And everyone just kept saying come on, you know, it’s been so many years. And I was functioning, but I think it was last year… So I suffered from panic attacks; I suffered from panic attacks from before my husband died, and they got worse. They’d gone away for years and then they came back when he was diagnosed.
And last summer, around this time last year, I had such a severe panic attack, I was driving my daughter and she had to call an ambulance. And that was when I decided that come what may I needed help.
But it was still quite some time after that. I still had to go through about six weeks of people going, “Come on, you’re fine. Take a pill.” And I didn’t want to take a pill. So yeah, I was lucky, eventually.
Lucy: It sounds like you had to be really tenacious to get access to the therapy?
Fiona: It was a real, real battle. And as much as I really liked my GP, and my GP was the person who was there when my husband was dying. So he knew what happened and how horrific it was. But in the end his last thing was, “No more therapy. You’re lonely. You need to go out and find yourself another man.” And that was when it just – that was when I sat in my car for an hour and a half and cried.
Because it wasn’t that, I knew it wasn’t that. I knew there was something really wrong, and that I really, really needed help. And TalkingSpace came in, and I had a huge amount of telephone conversations and meetings in person, just for them to try and work out which way to send me.
Lucy: Fiona was diagnosed with post traumatic stress disorder. Fiona’s experience of losing her husband was deeply traumatic; not only the death but the lead up to it.
Fiona: I mean obviously it didn’t just happen to me; a lot of us were affected by it. But it was a particularly brutal and nasty way to die.
And you see the other thing is I did most of the nursing when my husband was sick. I don’t know how it happened like that, but it just did. So all of a sudden I became a nurse, which is not on my CV.
Lucy: Super, super hard. Yeah.
Fiona: And for us, Paul’s death was so horrific. He had a lot of failed operations, there was a lot of emergency surgery, there was an awful lot of blood everywhere. There were ambulances called in the middle of the night. He didn’t just have cancer and pass away, he suffered every day for those however many months it was.
And all of those things that we did automatically; like he had a feeding tube, because he had oesophageal cancer. So with me setting up the feeding tube every night, and flushing all of the feeding tubes out in the morning. And all of those things that you do automatically, because you’re trying to keep your loved one alive, they hit you later.
So his death, apart from – it sounds terrible to say this – apart from his death being the trauma, his illness was a trauma too. Because I did everything I could, but I couldn’t make him better. And this is part of my therapy, just my guilt at not being able to save him.
Lucy: The therapy that Fiona was referred to was a trial based at the Oxford Centre for Anxiety, Disorders and Trauma.
Graham: My name is Graham Thew. I am a clinical psychologist. And I do a job that’s split between research and clinical work.
So my research work I do at the University of Oxford, at the Oxford Centre for Anxiety, Disorders and Trauma. And my clinical work I do at two different services that are part of the IAPT programme, the Improving Access to Psychological Therapies programme. So that’s the Healthy Minds service in Buckinghamshire and the TalkingSpace Plus service in Oxfordshire. And both my research work and my clinical work all focus on digital treatment and digital therapies.
Lucy: Graham wasn’t Fiona’s therapist, but he’s involved in the trial that she took part in. I asked him about what digital therapy is.
And when you say digital CBT, what do you mean?
Graham: Yeah, that’s a great question, because I think terms like digital CBT can actually cover a range of different things.
So as we’ve just mentioned, we might be referring to webcam sessions; so video conference sessions that would perhaps cover the same content as a face-to-face therapy session. So you would still be able to see your therapist on webcam, and you both agree to meet at a specific time.
But digital CBT and other online treatments can be broader and look a little bit different to that as well. So for example there are some forms of CBT that still take place online with a therapist at a specific time, but instead of seeing them and talking to them via webcam, you’d actually be typing; you and the therapist would be typing to each other live, in real time.
Lucy: Like a kind of Messenger chat?
Graham: Exactly, like a sort of instant messaging chat.
And then another different category altogether is more of a sort of internet-based CBT programme. So that would be where there’s a website or a programme that has a lot of the therapy content written, perhaps in the form of little treatment modules. So written texts, videos, that sort of thing. And you would therefore work through those in your own time, and perhaps have some support from the therapist every so often; maybe in the form of messaging or a phone call or something.
So it can be a bit confusing because terms like digital CBT can mean different things.
Lucy: Is your research looking at all of those types of digital CBT?
Graham: The work that I’ve done has mostly focused on the last category that I talked about; the forms where treatment is partly written down and put into an internet programme in a series of modules, but that there’s support from a therapist. In the programmes that I’ve worked with most closely, the therapist would communicate with you by telephone, by messaging, and also occasionally via webcam as well.
Lucy: Fiona met her therapist at the start of treatment, but from then on she worked through online modules and she also had regular contact with weekly phone calls and messaging in between sessions.
Fiona: There were phone calls with the therapist, they were quite lengthy, but all of the way through it she would send me text messages, saying, “Don’t forget to take a tea break.” There was a lot of talk about tea. (Laughs) Or, “It’s a beautiful sunny day Fiona, can you get outside for a bit?” Just little nudges, little reminders to take time.
I found it much easier to have a telephone call with her. I think it did help that I’d met her once, so I knew what she looked like. But there was a complete and utter trust and we got on, and I really, really liked her. And I liked the fact that she understood me straightaway. And it didn’t bother me that it wasn't face-to-face.
And there was something that was really quite comforting about still being in my own home, and with my own surroundings, and with things that comforted me. And if I’d finished the modules, or I’d finished a conversation, and I was feeling low, then I was instantly able to do something.
I mean we had this one thing where I had this one particular piece of music that we actually played at my husband’s funeral, but it’s a northern soul track. And if I was feeling really low, I was told to put that on really loudly, which I did. I probably annoyed the neighbours, but anyway, it worked.
It just felt like someone had your back; that someone was just there who understood and was helping you along. It was sort of invisible support and it was fantastic.
Lucy: The content of the modules that Fiona was working through were developed to be as close to the content of the face-to-face therapy as possible. Graham explained.
Graham: I’m lucky to work with some very clever and creative people, who have been able to adapt certain treatment elements that we would do face-to-face, to think about how they could work online.
So the PTSD programme, again is really trying to faithfully replicate the same elements that would be done in face-to-face CBT treatment for PTSD. So the modules focus on a range of different topics. I guess beginning with some sort of information and explanation about what PTSD is, and why some of the difficulties that people might be experiencing are understandable, given what has happened.
And then the modules go on to help people start to think about the idea of reclaiming their life; trying to get back elements of their life that might have got a bit stuck, or have dropped off in terms of what they’ve been doing since the trauma.
And then as people progress through therapy, they would go on to actually working on the memory of the trauma itself. The idea being really trying to process what’s happened, so that it can be put away in the past where it belongs, so that it doesn’t keep popping back up and causing those difficult re-experiencing type difficulties.
Lucy: I asked Fiona what sorts of things she remembers from the modules.
Fiona: There was a lot about working on your triggers, which was great for me, although it was really hard to work out what the triggers were. So for instance one of my triggers was dark, rainy nights, because I associated that with driving back from the hospital. And wet leaves sent me into a… But then you don’t think, “How can wet leaves possibly make me feel this terrible?” But it’s true, it did.
And there are certain smells; the smell of copper coins reminded me of the smell of blood. Because my husband died of oesophageal cancer there was an awful lot of vomiting of blood. So things like that, that are in the back of your mind; you work on them to bring them forward and deal with them. It’s hard. It’s really hard. But when things start to make sense, you start to feel better. Or that’s how it worked for me anyway.
Lucy: You said about being able to identify the triggers. What did you then do with that knowledge?
Fiona: If I just take you to an example of what happened for me, is that I was driving home from work; I picked my car up and I was doing my journey home, from getting off the bus from work. And it was a dark, rainy, winter’s night, and I started to feel like I was going to have a panic attack. And I was on the dual carriageway, and there was not a lot I could do. And that’s when we worked out that dark, wet, November nights, were a real trigger for me.
So what my therapist did was uploaded an image of a dark, wet street with wet leaves everywhere. And I then had to go and look at the image, concentrate on the image, until I could cope with it.
And the first time I looked at it, I fell apart. It was awful, it was the most awful feeling.
And then I’d keep going back to it. It was about taking yourself… You are no longer in that situation which I was in six and a half years ago. My daughter’s at home, I’m doing this tomorrow, Paul’s no longer suffering. So yeah, it was about the here and now, and not being in the past anymore. Not believing it was those same nights when my husband was dying.
Lucy: So some things that you could say to yourself that would remind you that you were safe now.
Fiona: Yes. A lot about being safe, and a lot of thinking that my husband was no longer suffering. That I was safe, my daughter was safe, he wasn’t in pain.
Lucy: That sounds really important, yeah.
Fiona: I found it worked incredibly well for me, because I could keep going back to it. Or if I wanted time to think about something, I could stop, go and make a cup of tea, and let things in gradually, to try and work out why I was feeling the way I was.
So it was like 24/7 therapy, seven days a week. The modules were released for you, so you could never race ahead. My therapist released a module when she thought I was ready for that module.
There was a lot of work before we worked on the death of a loved one, which I was dreading. But it just meant that if it was 2:00 on a Sunday afternoon and I was feeling really, really low, I could go back in and go through something that I thought might help.
Lucy: And the module that you were dreading, the death of a loved one, what was that like when you got to it?
Fiona: It wasn’t as tough as I was expecting, but that’s kind of always the way, isn’t it? The death of a loved one all made sense. And I think it was the right time that I did it, because I’d already started to feel better. So that’s what was brilliant about it; it was all done at exactly the right time.
So there weren’t any of them that weren’t tough. I mean the toughest one of all was when I had to write my story. So you physically write your story, about what happened to you. And I had no trouble remembering the events and in which order they happened, but when you actually see it written in front of you, and you write it yourself; for me that was the breaking point, that was when things started to turn around. Because that’s when I realised that I had been through something utterly horrific. And I was allowed to feel the way that I was, because anybody would do in that situation.
So it’s almost like when I read my story, as hideous as it was, and as upsetting as it was, and I cried a lot when I wrote it. That was the point where I let myself off the hook a bit, for want of a better expression.
Lucy: Yeah, so you could kind of witness what had happened to you almost.
Fiona: Yes. Yeah, it’s exactly that.
Lucy: The programme for PTSD that Fiona did, and another similar one for social anxiety, have shown promising results. I asked Graham to explain the evidence base for this sort of therapy.
Graham: Yeah, we have done a few studies so far, starting with some initial pilot studies, to test the programmes. And also some randomised control trials; so comparing them to other forms of treatment. And what’s been really, really pleasing to see so far, is that the results that we’ve been getting are really encouraging. Really showing that people can make great improvements using this format of treatment, and actually can really overcome their difficulties.
So we’re very excited about the potential for our programmes, and for this format of treatment in general. Because I think it really can change people’s lives and make a real difference, in the same way that face-to-face therapies can.
One other thing to add perhaps is that another possible advantage of programmes that have some of the treatment content written down, is that they can be translated into other languages and shared around the world a little bit more easily.
So some of my work has been working with some teams in other countries to try and see how these treatments perform in a different culture to where they were originally developed. And I think the format there can be quite helpful in terms of translating and sending it to other countries and cultures who would like to use it, and feel that it could be helpful for them.
Lucy: Yeah, absolutely. And even different people in this country, who don’t have English as a first language. That sounds really helpful, yeah.
Graham: Yeah, absolutely.
Lucy: In general, although some people sometimes worry about whether digital CBT will be as good as face-to-face, Graham thinks that the evidence is promising overall.
Graham: So it’s quite an interesting one. I think there’s a sense amongst many people, both members of the public, and therapists and researchers, that digital CBT and online treatments are quite a new development. But actually when you look at the literature, it’s really quite extensive; these kinds of things have been being researched for over 20 years. There’s now over 300 randomised control studies looking at the effectiveness of different internet-based programmes.
So there’s actually a lot more evidence out there than people realise. There are a few things I guess that we can conclude from the evidence so far. Obviously it’s a very rapidly growing area, and lots of people are doing more studies all of the time. But generally it seems that online treatments, when they’re compared – they’re most usually compared to people on a waiting list, or a group that aren’t receiving any treatment at the moment. And so generally those studies will find that actually an online treatment is much better in terms of your clinical outcomes, compared to waiting or doing nothing.
Treatments that have support from a therapist generally do a little bit better than ones that are unguided; that don’t have that therapist support.
Studies have generally done follow-up, usually up to one year, or the longest I think I’ve seen is up to five years after treatment. Those studies all generally seem to find that the gains that people have made during the treatment have been maintained over that time. So that’s really encouraging.
Lucy: One limit to the evidence base is that there are not as many studies comparing digital to face-to-face treatment.
Graham: Generally what those studies have found is where the digital treatments have support from a therapist and have been compared to a face-to-face treatment, the outcomes are similar. It’s really exciting I think to know that actually the outcomes might be similar; it could be just as helpful for you doing your treatment online as it is face-to-face.
There is need for more studies doing that direct comparison, because they’re not quite as common as other forms of research in this area. Some of those review studies have suggested that maybe there are some studies within that that perhaps aren’t the highest quality at the moment. So I think there is need to do more work on that.
Lucy: And is digital CBT better for any particular people, or any particular problems?
Graham: I don’t think we have the evidence yet to know that. But I think there are a number of potential advantages that people might experience doing their treatment digitally. I tend to see it as being that we’re not necessarily looking for digital treatments to be replacing face-to-face work. It might be a really helpful option for people.
They are quite flexible for people, so people can do them maybe in the evenings, at weekends maybe, if they’re working, or they can fit it around other commitments that they have. I guess it avoids the cost and the time that they might need to take off work or travelling to an appointment.
And as I mentioned before, the idea of going at your own pace and maybe going back and re-reading, or re-looking at something from earlier in treatment, that you wanted to kind of refresh on.
Lucy: Fiona sometimes used her commute on a coach to London to work through the modules.
Fiona: It helped me doing that, because if I started to feel panicky or anxious, I’d then concentrate on my surroundings.
Lucy: And how have things changed since having had the therapy? Apart from there being a global pandemic and everyone going into lockdown.
Fiona: Well, for a start I wouldn’t have been able to deal with the global pandemic and going into lockdown, I don’t think. My mother did mention that to me the other day, how proud she was of me, because I was dealing with it. So that was a good thing.
I’m calmer. I’m not going to say that my panics have… I haven’t had a panic attack since. I’ve nearly had them, but I can get out of them easily – well, easier. I’m calmer, I’m more relaxed. I’ve got a sense of wellbeing, apart from the global pandemic. I’m just happier.
I’m not saying it’s all completely gone away, because I miss my husband, but it’s not crushing anymore. And I can think of him and smile, whereas before all I saw was the illness and the pain. And it still flashes into my head, but it was flashing into my head all the time before, and it’s not doing that now. And I think I’m better equipped to deal with things now than I was before.
Lucy: That sounds really different, yeah.
Fiona and Graham had some advice to share for anyone thinking about having digital CBT.
Graham: I definitely recommend asking what sort of studies or research had been done on that particular internet programme. Because as we’ve said they do vary a lot, and so I guess it would be good to know that what’s being considered has been tested and shown to be helpful for people.
Then I guess the other questions; one would be what format is the treatment? Because I think even though it might be called digital CBT or something, that might still vary a lot. So is it going to be done over webcam sessions, or typing, or a written programme online?
And then I guess a last question to think about, or to recommend people ask, would be about what support there is from the therapist. So particularly what format that support would come in and how often they would get to speak or interact with their therapist in some way. Is it messaging once a week, or is it phone calls? Because I think it’s important to get a sense of that.
Lucy: Graham has also been part of writing some guidelines, to help people know what to ask when they’re offered digital provision of therapies. I’ve linked to this document in the show notes.
Graham: So I guess at the moment, in the context of the coronavirus, it might be the case that some people are a bit worried about seeking help, because of concerns about having to go and see someone, or meet them face-to-face. But I would encourage people not to put off trying to make contact and reach out to people.
Most services at the moment are offering a lot of digital and telephone options, so it really wouldn’t necessarily be the case of having to go and see someone in person.
And obviously this is a tough time for all of us, placing many strains on our mental health. So I would encourage people to reach out if they’re struggling and need some extra support.
Lucy: Graham also had a thought for people who might worry about the relationship that can be built with digital CBT and whether it can be as good.
Graham: Actually there have already now been a few studies looking at the idea of a therapeutic relationship online. What those studies have found is that actually the people who have been going through an online, digital treatment, do report a similar level of connection to their therapist as people who are doing their treatment face-to-face.
One idea I have about that, and that might be interesting to explore a little bit more in some studies, is I guess in online treatments you have the ability to send your therapist a message at any time. And obviously it’s not possible for them to get back to you instantly all of the time. But I think for many people that can give quite a powerful sense of their therapist being there for them. That might go some way to really strengthening that connection.
Which perhaps is slightly different in face-to-face. Where you would perhaps have an hour together with your therapist, and then it wouldn’t be common that you would be speaking to them or contacting them too much until your next session.
Lucy: It’s really nice to hear about the difference between the two types of therapy. It’s making me think it would be nice if people had the choice sometimes, between the different types, because they do feel maybe slightly different.
Graham: Yeah, definitely. I think it would be nice to move towards a place where we have these options easily available and that then people could be able to make a choice about what they think is going to work best for them.
I don’t think we’re quite there yet, because a lot of these programmes are still in the earlier stages of development. There is obviously also quite a lot of work to train therapists in how to use them and to actually get them embedded within clinical services. But certainly that work is happening, so hopefully we are moving in that direction.
Fiona: I would say do it. Even if you’ve got reservations, absolutely do it. You’ve still got someone there who’s got your back and wants to help you get better. So I certainly wouldn’t shy away from it just because it’s a different format. It didn’t seem any different to me, and it really did change my life.
But the fact that it was always there if I needed it was invaluable, absolutely invaluable. Because to be able to message your therapist at – it didn’t matter what time. If I was awake at 1:00 in the morning, I mean she wasn’t going to answer, but it didn’t matter. I could still send that message because the next day she’d respond. And I’d got it out of my head and I wasn’t dwelling on it, because I’d sent that question out there.
So just try. Even if it takes you out of your comfort zone, even more than you’re already out of, because you’re having therapy. I feel really lucky that I got that type of therapy, I really do.
Lucy: Do you have any advice for people who maybe are trying to comfort loved ones who are grieving? Do you have any advice for them?
Fiona: I think the awful thing about grief, everyone thinks – unless it’s happened to them – the number of people who said to me, “Come on, pull yourself together.” I mean it was absolutely astounding. A lot of people who didn’t, but also their lives go on. And so at the beginning when someone dies you have an awful lot of support, and then it disappears.
Don’t tell them to get over it, (laughs) don’t tell them to pull themselves together. I think the thing is to listen; to listen and to be sympathetic. Just to not try and make it right. I think that’s what I found, is a lot of people just didn’t want me to be in pain anymore. So they tried to jolly me up or push it away.
And I think it’s really hard if you haven’t been through it to be really, truly, truly sympathetic. But I think the best thing to do is listen and comfort, and not try to make it better. Because the only thing that’s going to make it better is for your loved one not to be dead, and that can’t happen. So you just need gentle support, I would say.
What’s so great about the therapy is I can say it was terrible, it was awful. But then in just a matter of fact way. My heart doesn’t hurt any more. I know that sounds like a real Disney thing to say, but it’s true. And it took ages to get there, to get the help, but I got it. And I’m just really grateful I got it. Yeah, I feel really lucky about that. Thank goodness. (Laughs)
Lucy: That’s all from me. Massive thanks to both Graham and Fiona for sharing their experience and knowledge.
Both digital therapy and traumatic grief are very relevant at the moment, as the effects of the pandemic continue to impact. And I’ve put information in the show notes if you’d like to know any more about either of those things.
Take good care and please do fill out that survey if you get a moment, I’d love to hear from you.
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