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Airing Pain Programme 135: Pain Management During the Covid-19 Pandemic – Lessons Learnt
First broadcast 22nd February 2022.
How technology developed for the COVID-19 pandemic has changed the working practices in pain clinics and the benefits of patients working together with doctors.
Paul Evans: In the two or so years when COVID-19 was at its most critical, well hopefully anyway, the face to face relationship between doctors and patients was one of the first casualties. Now, with restrictions relaxed have we returned to the status-quo? Or has what was developed at breakneck speed, with necessity being the mother of invention, lead to new working practices? So what did we learn that would actually improve the management of chronic pain into the future? Dr Cathy Price is a consultant in Pain Medicine with the University Hospital Southampton NHS Foundation Trust.
Dr Cathy Price: It’s going to take quite some time I think before we truly learn and understand what the pandemic has taught us. I feel first of all that we can implement change at a very rapid rate when we need to. So we had to go from delivering face to face services to everything being online in a couple of weeks. We learnt from that how to use a lot of technology that probably would have taken years to introduce. And we also learnt what patient preferences were with that. When we introduced this locally what we learnt was what we could safely manage at a slower rate and what we absolutely needed to continue delivering. So we took a really evidence-based approach to deciding who to prioritise but made sure that the people who we couldn’t see at that moment were safe and checked up on them.
We also looked at what was the impact of remote consultations at all different aspects of the patient journey? In the service we found that really the education sessions that we invite people to could be very safely delivered online and that infact people preferred them because they didn’t have to drive and didn’t have to sit with other people because they were afraid of picking up bugs themselves and it was much more convenient. And people like me, my medical appointments didn’t need to be delivered in a clinic so that saves people sitting around waiting for hours, and then we also learnt that the vast majority of psychological interventions could be safely delivered online. What we also learnt was that it wasn’t a great idea to try and do rehabilitation online because people need that face to face reassurance and modelling of what needs to be done.
Paul Evans: What do you mean by that?
Dr Cathy Price: So to understand what the movement looked like and how to do this safely we really needed to see it in action because many people learn by doing. So the physiotherapy side, particularly, said: ‘we’re not doing this remotely and minute more than we have to.’ So in terms of delivery of a service we learnt quite a lot. In terms of impact then the referrals from primary care (primary care as you know had to reform and reshape many times) and when we were merging services and splitting them apart trying to do different cohorts I think many people got lost in that process. It was difficult to get through to general practices so what we learnt was that primary care services needed to be different, you needed to have better access than just remotely and that trying to do it all with a lot of triage was sometimes not in patient’s best interests.
The other thing that we have learnt is the intense loneliness that people have experienced. When you phoned people in the middle of the pandemic they were just glad to hear a voice and glad to do something. I would say that dropped off very quickly as soon as everybody could get out but its really left its mark, so that one of the biggest impacts that we all know about is that impact on people’s wellbeing – emotional health I think is going to be with us for a long time. We’ve been fortunate to at the same time in primary care be able to provide more staff who can support people’s wellbeing. For example social prescribers, health and wellbeing staff and primary care mental health workers. So there is more infrastructure but what I’ve learnt is that all needs really careful management, grouping and leadership to make it work for patients.
Paul Evans: I think with the online consultations, you think there may be a future in that or there is a future in that. Putting my glass half full about the COVID epidemic, if you tried to get that through in a non-epidemic time it would take you donkeys years and there would be so much opposition to it but largely it has worked and people like it.
Dr Cathy Price: Yes. There are definitely some people who it’s very bad for. It’s about trying to get that balance though isn’t it. You’re absolutely right that we would never have done it at the rate of change that we did but it was something I thought was really needed and had been needed for a long time. I’m not sure it’s terribly fair to ask people to get on two sets of buses to come all the way and then sit for an hour on a seat. By that time I think they’re not up to processing very much at all. I’d much rather do things in the comforts of people’s homes if at all possible.
Paul Evans: What are the downsides of that?
Dr Cathy Price: Well firstly that not everybody can grapple with technology. Even if you provide iPads, which we managed to get, not everybody can use them. People have got communication difficulties – and I don’t mean people who are speaking a different language because actually that was relatively straightforward. More people who may have sensory loss or language difficulty really struggle. So you really need to be sure that people can understand and are finding it useful and not just being polite.
Paul Evans: You mentioned physiotherapy. A doctor can work out a heck of a lot just by watching them walk from the door to the seat in the consultation room.
Dr Cathy Price: It absolutely can’t be done online, can it? You’re absolutely right and I think that’s the bit that sometimes is missing so that’s were you need to sometimes allow space to be able to speak to people. Physiotherapists especially, a lot of it is on observation.
Paul Evans: That’s Dr Cathy Price. I want to take you back now to an edition of Airing Pain we made in the Autumn of 2019, so just a few months before COVID 19 grazed its ugly head. ‘Experts by Experience – Working Together in Pain Management Programmes’ was a workshop running in parallel with the British Pain Society’s ‘Pain Management Programme Special Interest Group’ national conference in Bristol, in which patients and practitioners from four different pain management centres around the UK shared their experience of working together. You can still listen to that edition of Airing Pain, it’s number 119 at Pain Concern’s website which is Painconcern.org.uk. But here’s a flavour:
Primrose Granville: Unemployment is one thing but not being employable is a totally other story. It’s a case of ‘you are useless’ and this happened around the same time when our lovely former Prime minister David Cameron came up with the word ‘scroungers’. And here I was, on benefits, a scrounger.
Penny: If you just help one person it’s so worthwhile I had a lady and she was in such distress and anxiousness when I first met her and all she wanted was someone to listen to her and to feel validated that her pain is real. It really is there.
Primrose Granville: And I turned up Week One, Two and then in Week Three that gentleman there who is trying to hide, Rob, who you all know, changed my life with five simple words: ‘I still live with pain.’
Penny: And it’s rewarding if you see someone who is down here to suddenly be in a better place. It’s worth it just for that one person.
Primrose Granville: I’m going to live with this for the rest of my life, but I’m going to have a nice life. I just do things differently and that’s what pain management has done for me. The best part though, is being on the team. You feel so valued.
John Bremner: If only I had had some of this information earlier in my pain journey. Why didn’t I get this earlier I might not have been there in this state if I had had information earlier?
Lindsay: To those who are considering volunteering I would wholeheartedly recommend you to get involved. It is so rewarding and so fulfilling. Very best of luck to you all and please remember to be kind to yourself.
Paul Evans: That was an excerpt from an earlier edition of Airing Pain, number 119, and as I mentioned you can listen to the full edition at the Pain Concern website. And the voices were of participants in the ‘Experts by Experience Working Together in Pain Management Programmes Workshop’ just a few months before we were hit by the COVID-19 pandemic. Of course, a lot of water has gone under the bridge since then, to put it mildly. The workshop was facilitated by consultant and clinical psychologist Dr Nick Ambler of the North Bristol NHS Trust. He and his team were working to create a more personalised form of management and support for people living with chronic pain. Two years on from that workshop, he and colleagues shared their experience with delegates at the 2022 British Pain Society Annual Scientific Meeting.
Dr Nick Ambler: We convened the pain management programme conference in Bristol and I was very keen to run a workshop that would showcase the involvement of service users in service delivery and service organisation and that’s what we did. It was all about the patients.
Paul Evans: And why was it so good?
Dr Nick Ambler: Well I think it’s a refreshing change to take part in a pain science meeting run by the organisation that most represents the practitioners working in the area. It’s nice to hear the involvement of patients alongside that meeting. Very much in tune with what we’re trying to achieve as health professionals – but as partners rather than in the more traditional way of thinking about the work as being ‘we develop the technologies of pain care and we have recipients of pain care lining up to try it out’. We don’t think in that way in pain management work and that felt like a chance to more appropriately reflect that evolution taking place in the involvement of service users.
Paul Evans: I wasn’t aware that there were many health professionals there. I guess there was you and there was Martin Dunbar.
Dr Nick Ambler: There were probably about twelve of us in the room. I guess our target was really to talk more to the patients. So my main focus really was to try and persuade others who had been involved themselves or were curious about it to come along and hear from people who were involved in delivering services in different shapes and forms in different sites around the country, to hear about how they do that and whether or not it works.
Paul Evans: But its not just about people with pain helping people with pain. It’s also about people with pain helping health professionals manage people with pain.
Dr Nick Ambler: It’s supposed to be a partnership, In my profession when you’re learning about consultation methods, one of the tricks of reflecting how well you’re getting on is to ask within yourself. What does it feel like this discussion I’m having with this client? Does it feel like a wrestling match or a dance? To try and have that picture and approximate where your position is. Because if it feels like a wrestling match it’s probably not going very well and you need to think about doing something different. If it feels like dancing then you’re in tune with each other and that’s a fair reflection of a process rolling forward in the right way. So with that in mind the way in which we work in partnership with patients should feel like the organisation and delivery of pain services is like a dance, where it’s good to see the people who need our help and to be working out what they need and how its suited best to them with them rather than to be second guessing.
Paul Evans: I guess the idea is that patients leave with a smile on their face and doctors are left with a smile on their face.
Dr Nick Ambler: Well that’s a big ask Paul, and I’m not sure we’ll get that when dealing with pain but a sense of feeling heard, definitely. The reverse is where somebody is coming away maybe with a list in their pocket which didn’t quite work out, or didn’t feel like they were able to express themselves or that they’ve been patted off. Those things are quite commonplace nowadays and with healthcare under pressure there is a real risk of that worsening not improving But it is worth it for healthcare professionals to focus in on how well they’re getting on in a sense of finding common ground and hearing what people want. Changing the way they approach things to try and smooth out that kind of discussion so it doesn’t feel quite so tense, but I think tension is still prevalent in those kind of consultations.
Paul Evans: Well we’re at the British Pain Society Annual Scientific Meeting 2022. What were you telling the great and good of the scientific world about that?
Dr Nick Ambler: Well if I tried to tell them I don’t think we’d get very far. I’ve been asked to present something along with my colleague Nicola O’Brien about service user involvement and different kinds of pain service. But for both of us at the core of that are pain management programmes and the way in which working in partnership with people who had been former patients but had volunteered to come back, taken part in training and received some supervision to develop them into the role. How that’s different, what you would have as a health professional if you embrace the idea of that, what you need to put into it, what’s expected of you. Some clarity about how it works rather than just trying to sell the idea of it, that’s what we were talking about today and I hope it was somewhat provocative. But my intention was to say ‘you can’t make an omelette without breaking eggs’, which is an old expression about there are crunch moments as you try and move things forward. The issue really is of something which we have a strong sense of commitment to which is valuable but yet to really take off in pain services and more generally in healthcare.
Paul Evans: Well the title of your talk was harnessing patients to deliver care. Now that word deliver is quite an important word.
Dr Nick Ambler: Can I, before we get to the delivery take the harness off which is what I did at the beginning of the talk. I don’t think harnessing anybody is a good idea and we switched the title to working in partnership to deliver services. Do you find ‘deliver’ is a bit of a provocative thought?
Paul Evans: Well the word deliver doesn’t involve me as a patient. You talk about breaking eggs, who are the eggs here?
Dr Nick Ambler: Colleagues.
Paul Evans: So do you think that deliver is the wrong word?
Dr Nick Ambler: I wish I hadn’t mentioned about breaking eggs, I don’t want anyone to get broken. Delivery does reflect a sort of sense of somebody having something to give and they’re being a passive recipient so no in that sense it’s not a good word. But we did, in the talk, cover at some length the transition from the traditional kind of ‘bring your problems and I’ll fix them’ kind of encounter that exists in the relationship between doctors or health professionals generally and patients to one of shared decision making, joint exploration and a sense of trying to work on the things that the person most wants to work on and then reaching decisions through a shared understanding.
Paul Evans: Those traditional views – they are traditional and they still exist. Doctor sits there, patient sits here. ‘Doctor I’ve got a bad shoulder. Fix it.’ It takes education for the doctor but also for the patient. Lets assume the doctor wants to change things but how do you change the patient viewpoint?
Dr Nick Ambler: I’m imagining here a general practitioner that this is happening to at primary care level, and so I’m thinking that from the doctor’s point of view there is a little voice in their head saying ‘why do you keep asking me that because you know that I can’t?’ That is not a friendly thing to say in the consultation. And instead, I’m not sure you’re asking me the right question here Paul (this is an imaginary consultation). It’s been 3 months since you last asked me that. We’ve been round the roundabout of trying to find a means of fixing this pain and I had been thinking ahead to our discussion today about how we look sideways at that, kind of differently. If you can bear with me a few minutes I’ll explain a bit more about what I mean. Would you like me to do that?
Paul Evans: A few minutes is the problem.
Dr Nick Ambler: Again, a mantra for those undertaking training around this – this is about spending time to save time. Think back to where we were a moment ago. This is a repeat consultation. This is a revolving door process. This person has been in the room sitting in the chair asking for help for this injured shoulder. Whatever is going on with the shoulder, several times previously I suspect, and there hasn’t been any sense of moving forward with that so we need to try a different route. It would be a matter of trying to divert in a direction that is probably more productive.
Paul Evans: Pain Concern has done research and is continuing research into patient doctor consultations and they have developed their navigator tool that puts patients and doctors on the same plane. The doctor has to do his or her homework and the patient has to do his or her homework also.
Dr Nick Ambler: So a preparedness to have a different conversation that is ideally better set up if both sides know what that change in direction is. And the tool can help it from the patient’s side. Training in the consultation process in the different format from the health professional side is also a useful idea. If one or other really doesn’t get it it’s much more of a struggle.
Paul Evans: Well there is an elephant in this room and we’re going to have to talk about it and that is COVID. In the workshop we met – that was 2019 – 3 years ago and we’ve had COVID since then. Now, how has that affected what you were trying to put into place in 2019?
Dr Nick Ambler: Well it was a very unsettling period that’s for sure. In the beginning many of us were diverted into other priority areas to deal with the pandemic, to deal with all the other pressures which existed in the hospital. All outpatient activity was blocked for some time. Many pain clinics really had to shut down and the concern at that stage was where we would pick up as we got going again. But even before that happened there was a push within those of us running pain management programmes to go online and to try to meet the demand in a different way. And I think with that, the beginnings of something different had emerged in extreme circumstances so increasingly we were able to go back to more traditional roles, I think, within about a year of the onset of the pandemic hitting the health service. We were up and running with our online course well before then. And they were something which I guess we weren’t particularly under pressure to understand well before then but now have become very much part of the array of things that we do. And we are in a different phase now where we are able to things again about getting going on an outpatient basis. We have got a backlog of work to pick up with. The consequences of that are going to play out for quite sometime. But we’ve jumped forward in our understanding about access that is made available by the means of working with people. That’s evolved in a different direction. I’m not going to tell you that face to face working is less preferable than working online. I don’t believe that for one minute but I’m really glad that we’ve learnt about how to approach this in an alternative way and I think if nothing else right now, in the NHS we are going through a refresh phase looking again at how to do what we can do with a load of work to catch up with. And it demands new thinking and reasoning and that’s what I find encouraging about what has been a very difficult situation.
Paul Evans: I would guess that one of the issues with that word refresh is that everything we learnt in the last two years, that was just a temporary thing and back to the old ways.
Dr Nick Ambler: I can’t imagine that’s going to happen. I don’t see evidence of that around. There has been this opening to improve access. So we have, for example, introduced first contact being by zoom if possible so it’s possible to come into our service with a face to face contact initially but the initial screening is done by zoom calls, by preference. That’s enabled us to pick up more quickly with people. I think one of the initial things that you experience when you’re coming into the service is the sense of a long wait. Well, that’s less the case because of what we’ve learnt about online consultations. But we blended that with face to face follow up, where that’s possible, and we’ve continued with a segment of service which is not face to face open to those people that would prefer to approach it in that way.
I think new stuff has come out of this – grim as it has been – it has shunted things forward with a lurch. We are still under pressure but we’re doing things differently now and I don’t think we can go back.
Paul Evans: I think the word of question that came up in your talk earlier was ‘disheartened’. Are you disheartened?
Dr Nick Ambler: Not at all. There’s a sense of a lot of effort being expended. I might’ve felt set back because today I’m talking about the thing that you and I were talking about three years ago when we last met in Bristol and in a sense I can’t see that there’s been a jump forward in the involvement of service delivery in a way I would’ve hoped and visioned at that stage but realistically we’ve had three years of COVID and we’re facing a very different situation now. This offers an enormous amount of potential input and I see with this and with the idea of a refresh perhaps a better chance to get a more firm footing with that. I was at one of the talks this morning about virtual reality and how that might be been incorporated. Talking to Owen Williamson afterwards about the slow pace at which – something that I think is really quite helpful for acute pain – the slow pace at which that’s moved forward. He was reassuring in a sense. He said: ‘You know you need to understand on average a new piece of technology that’s going to help things along clinically can take on average seventeen years to be implemented.’ I shouldn’t feel disheartened really. I am accustomed to taking the ideas and rehashing them but also with a new sense of the changed situation to continue to draw attention to this as a huge potential asset of volunteers being alongside health professionals, working in partnership for delivering services. I guess we need another term for that. But the broader term is actually co-production – the idea that you’re creating something, you’re finding a way with something and to take that forwards in a sense that that is part of the way out of this difficult situation. Its an evolution and naturally takes a lot of time. I feel encouraged by that but there’s still plenty of work to do.
Paul Evans: That’s consultant and clinical psychologist Dr Nick Ambler of the North Bristol NHS Trust pain management programme. He and his team guest edited issue number 78 of Pain Matters magazine about delivery of pain management throughout the COVID-19 pandemic. You can get details from Pain Concern’s website which is Painconcern.org.uk and you can download all editions of Airing Pain from there and find a wealth of support and information material about living with and managing chronic pain, including more details about this edition of Airing Pain. Now, as in every edition of Airing Pain I like to remind you of the small print that whilst we in Pain Concern believe the information and opinions in Airing Pain are accurate and sound, based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. They are the only people who know you and your circumstances and therefore the appropriate action to take on your behalf. It’s important for us at pain concern to have your feedback on these podcasts so that we know what we are doing is relevant and useful and to know what we are doing well or not so well so do please leave your comments or ratings on whatever platform your listening to this on or the Pain Concern website of course. That will help us develop and plan future editions of Airing Pain. Back to this edition of Airing Pain. We heard Dr Cathy Price earlier talking about how pain teams have adapted to working through COVID-19 restrictions so what would she like to keep from those two years?
Dr Cathy Price: I’d like to keep the flexibility – our team meetings are so much better since they’ve been online. Haven’t had grumpy people turning up at 8.30am in the morning having fought their way through two hours of traffic, for example. I’d very much like to keep that flexibility. When people have been booked in face to face and I can’t see why I say ‘what would you have wanted’ and they say ‘we’d have been perfectly happy at home’, so we need to really step back and think. I’d like to keep a lot of that technology. I fear we’ll be told it’s too expensive and we won’t have as good access as we have had. I’d like to keep all of the different ways that we’ve communicated with people. I’ve got much better at text messaging, sending links, doing video consultations – much, much better. And people have as well. They have been really open to it. I’d like to keep that openness I think.
Paul Evans: How do you make sure that all the good things aren’t rolled back?
Dr Cathy Price: What we’ve done is done an evaluation to really make sure that you’ve asked people how it has gone and what they’ve felt. You learn from that and you keep asking again and again. Look to see whether you’ve got lots of complaints, also use patient feedback as well and ask the right questions.
Paul Evans: Cathy Price. Going back to that experts by experience working together in pain management programmes workshop just before COVID hit – Nick Ambler.
Dr Nick Ambler: The person that hit the right tone at the beginning who works with us at Bristol is Primrose Granville, who I thought did a really inspiring talk about how she had found it incredibly useful taking part in a programme, changing her life and then continuing to do that. So I have to say one of my main memories from the period of time when we were all locked in watching TV, which is pretty much all I did when I wasn’t at work. Seeing the local news, seeing Primrose out on the street in one of the suburbs of Bristol where the uptake of vaccinations was very low, stopping people on the street and persuading them to have jabs. And I thought well my immediate reaction was – isn’t that just Primose, she’s phenomenal. Then I thought well I don’t want to lose her. Someone has found her and taken her away from our service and immediately felt quite defensive about that. It just shows you the kind of people that come forward and they know the impact they can have. She was interviewed on TV about why you’re doing this. And she said: ‘Well I’ve realised how important this is and if I can use the way I present things to persuade others to do it I’m going to do that.’ I identify with these people. It’s a poorer suburb of Bristol in the sense of average income so I need to talk to them. I’m the one who should be talking to them. And doesn’t that nail it actually. That’s exactly right. That totally reflects the way in which we became involved with Primrose in trying to improve the way we do things in the pain service.
Paul Evans: And that is patients being involved in a team.
Dr Nick Ambler: Being part of the team.
Paul Evans: Nick Ambler. And so we let Primrose Granville, part of that team have the last words of this edition of Airing Pain.
Dr Primrose Granville: I have been on two pain management courses, so I went to one in the old days. That course didn’t do anything for me. It was purely instructional. I felt like I was in high school again being forced to do maths which I hate. And I got nothing from it whatsoever, absolutely nothing. Fast forward a couple of years, anyone know Dr Greenslade? Yes, so we had a really long conversation. It ranged from articles in the Guardian to articles in The Sun where he was actually trying to convince me to go on a second course and I was like no I’m not doing that, give me the magical pill and I’ll be fine. Give me surgery give me anything. And he was like ‘no you’ve had the surgery, you do need to go on another pain management course, I promise you its different’. And I turned up Week One, Two and then in Week Three that gentleman there who is trying to hide, Rob, who you all know, changed my life with five simple words: I still live with pain. Those were the five simple words that literally changed my entire life. And then he started talking about all kinds of things that he did and I’m like I was stuck and I still live with pain. And I remember leaving the room with my pain friend and we used to be a lot of trouble on the course. You know we were the talkative ones. And we were sitting in my car because I was taking her home that evening and we were like ‘so we can do stuff’. The pain was controlling my life and one of the things I wanted to do was, my only goddaughter lived 146 miles up the M4 and the A13 in deep Essex. Why her parents choose to live there, I don’t know. And I wanted to be able to get in my car and do the journey from beginning to end and just not stop. And he spoke about going down the M5 to Cornwall and how he had to stop several times. And I was like, oh my God, stop several times. But I heard him out and it was like wow so he changed my life with his examples but he got me with those five words and I thought ‘hmm’. And you know the end where they give you that long questionnaire that we all have to fill out, the big long one that looks like an epistle. So when you get to that last question that said: ‘Do you think you could volunteer here?’ or something like that. And I consulted with my friend and she said it’s too much and I said I’m going to try and I ticked the box. And they phoned me the following week and I was like they don’t hang about so I kind of wanted to see what it was like from the other side. To find out if I could impact somebody else the way Rob has impacted me. His simple example, his simple words. His: ‘I still live in pain but I actually have a life that I enjoy.’ And I’m glad I met Rob because I’m glad that I actually volunteered because I felt valuable. I was turning up on Wednesday and when I wasn’t well they missed me. And that’s my why. I feel like I’m doing something that’s worthwhile to someone else. Who would’ve thought the words ‘I still live with pain’ would mean anything to anybody? I wouldn’t have thought it would mean anything to me. But it does now because it was the moment that I decided I’m going to live with this for the rest of my life, but I’m going to have a nice life. I just do things differently and that’s what pain management has done for me. The best part though, is being on the team. You feel so valued. It’s a case of somebody wants you there. For me being that messenger is a lot more important than the message.
End
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This edition of Airing Pain examines the impact that the Covid-19 pandemic has had on the relationship between patient and healthcare professional.
At the start of the Covid-19 Pandemic in 2020, the face-to-face consultations between doctors and patients was one of the first casualties. With restrictions relaxed, have we returned to the status quo, or has what was developed at breakneck speed led to new working practices?
In 2019, just months before Covid-19 became part of our lives, a workshop, ‘Experts by Experience – Working Together in Pain Management Programmes’ explored an innovative approach to pain management in which patients became integral members within the clinical pain team. Has this relationship survived social isolation and lockdowns?
COVID, self-management of long-term conditions, peer support, communicating pain, community healthcare, patient volunteer, support group, training course, volunteering and workshops.
1:15 – Dr Cathy Price on delivery rapidly changing from face-to-face to online, having to prioritise vital healthcare, and what didn’t work remotely.
6:00 – Dr Cathy Price on the barriers the technology can create.
7:05 – Paul Evans recaps Airing Pain 119 Experts By Experience: Working Together In Pain Management Programmes
10:10 – Dr Nick Ambler talks on the Experts by Experience: Working Together In Pain Management Programmes Workshop.
14:12 – Nick on the service user involvement in delivering Pain Management Programmes and what it means for health professionals.
17:00 – Paul ask Nick how a GP could approach a repeat consultation about pain to create a productive outcome.
19:55 – How the Covid-19 Pandemic impacted the work of pain clinics.
22:25 – Paul questions whether post-pandemic approaches to healthcare will revert.
27:00 – Cathy Price on the positive outcomes of working during a pandemic.
28:00 – Nick Ambler on the impact of patients being part of the team.
30:00 – Primrose Granville on her pain management programme experience.
This edition of Airing Pain was possible thanks to support from the British Pain Society and has been funded by grants from the James Weir Foundation, the Hospital Saturday Fund and the Erskine Cunningham Hill Trust.
While #WalkYourDogMonth is an attempt to encourage people to exercise their dogs regularly, the team at Pain Concern reckon that it’s a great opportunity to consider the positive effects that regular dog walks can have for the owners too – whether living with pain, or not.
It goes without saying that we also wanted to introduce you to some of the furry friends who are part of the Pain Concern Community – the pets who belong to our team and volunteers.
We acknowledge that for many people, pain will be a barrier to getting out and about with a dog, so finding exercise within your abilities is key. With that in mind, here are some of our resources that can help with building your fitness:
This is Marley, who belongs to Sam, our People, Project & Operations Manager at Pain Concern.
Sam says ‘Taking Marley ‘walkies’ really helps me to relax and meet my daily step count. It’s always nice to meet other dogs and have a chat with their owners too!’.
This is Lindsay with her dog Dexter. Lindsay volunteers on the Pain Concern Listener and Reader panel.
Lindsay says ‘Dexter helps me in getting me out every day and socialising with people. He’s always there to comfort me on the bad days to cheer me up but he does hog the bed!’
Ali reviews and proofreads Pain Matters articles and podcasts. This is Ali’s dog Magic, so named for the white tip on her black tail.
Ali says ‘She gets me out in all weathers and even if I am almost completely seized up a walk invariably helps ease those joints and takes my mind somewhere much more pleasurable.’
Miriam is the Media and Production Co-ordinator at Pain Concern, and owner of Bertie.
Miriam says ‘walking my dog Bertie gets me out in all weathers. I always feel refreshed and more relaxed after we’ve been out together – and I love cuddles with him too!’
Fiona is a volunteer on the helpline, this is Fiona’s dog Betsy.
Fiona says ‘She loves her walks and since getting her I’ve made a whole new group of friends. I have persistent pain but having Betsy makes me get out and about every single day and I absolutely love her to bits
Owen is an audio transcriber for Pain Concern and has kindly sent in a picture of his dog Champ, who suddenly passed away last December. Owen says ‘We are utterly devastated and miss him dearly. I think the following quote form Dean Koontz will resonate with anyone who has lost a dearly loved dog: Once you’ve had a wonderful dog, a life without one is a life diminished.’
Heather is the CEO of Pain Concern and dearly misses her dogs above, whom she used to walk. She continues to walk her sister’s gorgeous dog, pictured below.
Heather says ‘My dogs helped me to get out and about and meet people. They loved every walk, even the short walks. Watching their radiant faces and shining eyes, lifts your spirits, as does saying ‘good day’ to others as you pass by.’
Find out more about what Pain Concern does, and our current volunteering opportunities – pet dogs are welcome but optional!
We’re starting 2023 with a round-up of our recent achievements, including updates on our core services and the support that they provide.
Every month Pain Concern reaches over 8,000 people. Our charity provides high quality information and support to people living with pain and those who care for them, whether family, friends or healthcare professionals.
A key objective has been to consolidate our activities: helpline, pain education, Airing Pain podcasts, publications, The Self-management Navigator Tool so they coherently fulfil Pain Concern’s vision of empowering all people living with pain to manage their condition and live life to the full.
Last year, we produced a promotional video that explains what we do and how we can help. We have made subscriptions to our magazine Pain Matters free to anyone living with long-term pain.
We either attend, or our video is played at 6 different NHS Trusts across the UK, and a growing number of NHS pain management programmes promote our free evidence-based resources, for example, 11 of the 14 NHS pain clinics in Scotland receive our magazine. In primary care, we have developed our relationships with Link Workers and GPs, for example recently we met with the Royal College of General Practitioners.
‘The group members were saying they really appreciated the info and hadn’t known about other forms of support‘ – Dr John O’Sullivan, Clinical Psychologist, Chelsea & Westminster Hospital
We achieved a steady increase in social media followers to 500 followers across each platform over the year. We use our presence on LinkedIn to reach health care professionals.
‘I really appreciate your help and time‘ – service user
‘I have learnt so much and I feel like these skills are being put into practice and making a positive difference to people’s lives‘ – helpline volunteer
The impact of the COVID-19 pandemic on NHS waiting times has been profound. Our helpline now provides a lifeline to those on the long waiting lists or those just struggling to get an appointment. In recognition, in the winter of 2022, the Scottish Government awarded us a 3-month grant. In that short time, we showed that over half of our callers felt better/more positive after speaking to us.
We presented a poster of the results at the Scientific Meetings of the North British Pain Association and the Scottish Pain Research Community (SPARC).
Our helpline is one of only a few which focus on chronic pain. It has grown steadily, since “lockdown” with over 150 service users contacting us each month by phone or email. We plan to extend our opening hours to 3 days per week and to make better use of our pain educational materials, including the Self-management Navigator Tool. To do this, we are training additional helpliners. Training covers contact skills, pain education and understanding self-management.
Ongoing supervision and support of our helpline team is provided by expert counsellors at Professional Help. To ensure that we provide a high-quality service, we are members of the Helplines Partnership and SAFEcic, following their standards. We have worked extensively with Evaluation Support Scotland to monitor and evaluate our service.
In 2021 Louise Cromie, one of our helpliners won an Inspiring Volunteer Award:
At HealthUnlocked the Pain Concern online community remains one of the most active forums in the UK, providing high quality and humane support to its 33,964 members. This year we attracted 2,000 new member and received over 5,000 posts
The award-winning Self-management Navigator Tool (Navigator Tool for short) is an interactive booklet which is designed to foster supported self-management and actively focus healthcare appointments on meeting the patient’s concerns.
Our helpliners use the Navigator Tool to help our callers identify their needs and prepare of healthcare appointments. Our web-based edition of the Navigator Tool has made it more accessible. It is used routinely in NHS Gloucester, NHS Grampian and NHS Greater Glasgow and Clyde. Its use is supported by the Scottish Government and it is mentioned in the recent NICE Clinical Guidelines for Chronic Pain.
We continue to promote its importance, so we were delighted to be contacted by the Pain Society of Alberta. They had watched our videos and loved the Navigator Tool. They invited Pain Concern’s chairman, Dr Martin Dunbar to give a presentation to their 2022 World Pain Summit.
‘The Navigator Tool can help patients to recognize all the different ways in which pain affects them, and therefore all the ways in which they can be helped or can help themselves. It also allows their healthcare professionals to get a quick in-depth snapshot of the most important areas to address. Most importantly, it allows an informed and realistic conversation about how we can all work together, as patients and professionals, to improve life with pain‘ –
Professor Blair Smith, former National Lead Clinician in Chronic Pain
‘The Navigator Tool is a literal treasure chest for the busy clinician. It allows one to discover root pain beliefs and concerns that could otherwise take months to uncover. The tool guides conversations and self-management treatment choices, while avoiding the dreaded pit fall of the patient thinking we don’t believe in their pain. It does the opposite…helps the patient feel heard, and gives us reassurance we are on an “evidence-based path together‘
– Alexandra Chisholm, physiotherapist, Calgary, Alberta, Canada
‘The tool really helps alleviate my nerves about not being able to get my point across properly‘ – Ruth Barber, service user
In the past our leaflets were accredited by Information Standard. This prestigious award certified that they, and aspects of our website, meet the quality standard required by the NHS. The PIF TICK award, administered by the Patient Information Forum, has replaced the Information Standard. We will ensure that we achieve this award in 2023.
‘The Four Nation Strategy for Pain Management is patient focused from point of first contact including, self-help signposting, personalised care and shared decision making‘ – Dr John Hughes, Dean of the Faculty of Pain Medicine
We were glad once again to support the work of the Faculty of Pain Medicine, by endorsing The Four Nation Strategy for Pain Management which was published in 2022. Likewise, we have endorsed the British Pain Society’s leaflet Managing your pain after surgery.
As members of the Scottish Government’s National Advisory Committee for Chronic Pain, we have had a say in shaping the Framework for Pain Management Service Delivery. The government’s plans are to work with the Third Sector Network to support the NHS and government to build sustainability in commissioning and coordinating community-based support for people with chronic pain.
Our helpliners have signposted callers to Flippin’ Pain’s excellent webinars on self-management and we participated in their roadshow campaign to change the way we think about, talk about and treat persistent pain.
We attended a conference organised by CRPS UK as well as a number of community groups throughout the year. We are all stronger through collaboration.
‘When I was first diagnosed, I listened to every Airing Pain radio programme. It gave me a bit more hope‘
‘So much more information than I got from the consultant, that’s why we need Pain Concern‘
Airing Pain radio programme is a series of half-hour podcasts supporting Pain Concern’s vision to empower people with chronic pain to manage their pain and live life to the full. They are produced and presented by Paul Evans, a multi-award-winning producer with forty years of experience as a programme maker – 30 years with the BBC and 10 years as an independent producer. He has lived with fibromyalgia for over half his working life, the experience of which combined with his professional expertise bring a unique quality and authenticity to Airing Pain.
Paul’s purpose is to provide support for everyone who lives with chronic pain, their families, supporters, social circle, employers and healthcare professionals, bringing them all under one umbrella: the pain community. Airing Pain promotes the concept of supported self-management as a recommended, effective intervention for chronic pain, and provides a powerful platform to hear the views and experiences for the all-the-often voiceless patients.
The assistance of the British Pain Society has enabled us to interview world-class experts and patients at their Annual Scientific Meetings. This year we collaborated with The International Association for the Study of Pain to provide a global perspective on back pain. Pain Concern collaborates with the UK’s only disability internet broadcaster, Able Radio, who broadcast each new edition of Airing Pain.
Every edition of Airing Pain is on Pain Concern’s website, along with programme transcripts. In 2021-22 we produced five new podcasts covering: a global perspective on back pain, neuropathic pain, Parkinson’s, shingles, post-herpetic neuralgia – facial pain, pain management programmes and benefits of an online community. Our listener numbers are 13,000.
‘Your body needs movement. I’ve always kept that with me that despite the pain I have to move’ – Janet Kerr, on managing Parkinson’s.
‘By sharing our problems, it becomes easier, first of all to really navigate, but it also becomes easier to understand that we are not in this alone‘ – Otieno Martin Ong’wen, physiotherapy ambassador for Kenya in the Global Physical Therapy project.
‘There’s not one part of my life that is untouched by pain. So, I would encourage anybody who doesn’t have pain, just to talk to the people they know who do. You just have to say ’How can I be a better support to you? What would make today easier for you?’ – Vina Mohabir, Clinical Research Project Assistant, The Hospital for Sick Children, Toronto.
‘There is only one answer to post-herpetic neuralgia, and that’s don’t get it. And the only way we have of not getting it is by shingles vaccination‘ – Dr Richard Johnson, Honorary Senior Research Fellow, Bristol Medical School
‘Your body needs movement. I’ve always kept that with me that despite the pain I have to move’ – Janet Kerr, on managing Parkinson’s.
‘By sharing our problems, it becomes easier, first of all to really navigate, but it also becomes easier to understand that we are not in this alone‘ – Otieno Martin Ong’wen, physiotherapy ambassador for Kenya in the Global Physical Therapy project.
‘There’s not one part of my life that is untouched by pain. So, I would encourage anybody who doesn’t have pain, just to talk to the people they know who do. You just have to say ’How can I be a better support to you? What would make today easier for you?’ – Vina Mohabir, Clinical Research Project Assistant, The Hospital for Sick Children, Toronto.
‘There is only one answer to post-herpetic neuralgia, and that’s don’t get it. And the only way we have of not getting it is by shingles vaccination‘ – Dr Richard Johnson, Honorary Senior Research Fellow, Bristol Medical School
‘Your body needs movement. I’ve always kept that with me that despite the pain I have to move’ – Janet Kerr, on managing Parkinson’s.
‘By sharing our problems, it becomes easier, first of all to really navigate, but it also becomes easier to understand that we are not in this alone‘ – Otieno Martin Ong’wen, physiotherapy ambassador for Kenya in the Global Physical Therapy project.
‘There’s not one part of my life that is untouched by pain. So, I would encourage anybody who doesn’t have pain, just to talk to the people they know who do. You just have to say ’How can I be a better support to you? What would make today easier for you?’ – Vina Mohabir, Clinical Research Project Assistant, The Hospital for Sick Children, Toronto.
‘There is only one answer to post-herpetic neuralgia, and that’s don’t get it. And the only way we have of not getting it is by shingles vaccination‘ – Dr Richard Johnson, Honorary Senior Research Fellow, Bristol Medical School
‘Your magazine offers hope‘
Staff and patients from NHS pain management programmes have guest-edited the different editions of Pain Matters quarterly magazine. This has brought fresh content and personal accounts that are inspiring to read. Articles that proactively help people in pain to acquire self-management skills and take more control of their lives are appreciated by readers.
Last year guest editors from NHS North Bristol explored how pain services have adapted during the pandemic. We covered the global year about back pain with guest editors from the International Association for the Study of Pain’s Global Alliance of Partners for Pain Advocacy, while in another issue guest editors behind the Advance Pain Discovery Platform showed how researchers and patients are collaborating in their efforts to advance our understanding of pain.
From our contributors
‘Ask yourself: when your doctor prescribed a tablet for your pain, did they discuss what you might do while you wait to see if they help?’ – Professor Michael Nicholas, on the importance of adopting a collaborative approach to care
‘It’s hard to explain that this invisible pain in my legs, feet and hands has caused major disruption to my life. It’s an unwanted soundtrack and I can’t turn the volume down‘ – Fiona Talkington, broadcaster, writer and presenter, on how difficult it is to describe pain.
‘I’d walk in the park or around the block, just for a few minutes every day. I still miss social interaction so I made sure I spoke to someone each day, just a ‘good morning or a ‘how are you’ helped‘ – Cathy Parker, former attendee of North Bristol pain management programme, on what helped her through the pandemic.
‘How could we all work together to ensure changes in the lives of people in pain?’ – Professors Lesley Colvin and David Walsh explain why researchers set up the Advanced Pain Discovery Platform
Other publications
Our popular pain education publications remain available on our website and we will post leaflets free of charge. With the support of two charitable trusts, The Stafford Trust and R. S. MacDonald we have created new publications covering Nocturnal pain in Parkinson’s disease (that is when most pain occurs) and, with the Shingles Support Society, Shingles vaccination, explaining why vaccination is central to preventing post-herpetic neuralgia. These publications accompany the Airing Pain podcasts on Parkinson’s pain, shingles and post-herpetic neuralgia. We have been heartened at the response.
The Immunisation and Vaccine Preventable Diseases Division of the UK Health Security Agency has invited us to collaborate with them in 2023 in updating their information. We have progressed our information on opioids for chronic pain, once again collaborating with the charity Maggie’s to produce a new publication on Opioid-induced constipation. We have collaborated with the Brain and Spine Foundation, to publish their article on Signalling for support – navigating life with a hidden condition.
Pain Press is a free e-newsletter which supplements Pain Matters and keeps beneficiaries and supporters up-to-date with our activities and achievements. We have published 7 editions of the supplement in the year.
2009 – Pain Concern wins Napp Award in Chronic Pain which allows us to launch Airing Pain radio programme in 2010.
2015 – Paul Evans wins best Nationals and Regions Producer at the Radio Productions Award, with the judges singling out our Airing Pain programme on ‘Female Genital Mutilation’ as a ‘stop what you are doing’ moment.
2016 – Our research Barriers to Self-management in Primary Care wins poster prizes at the annual scientific meetings of the British Pain Society and the North British Pain Society.
2016 - We contribute the chapter ‘Communication with patients’ to the Royal College of Anaesthetist’s Core Standards for Pain Management.
2017 – Barriers to Self-management is published in the British Journal of General Practice.
2017 – NHS Greater Glasgow and Clyde’s Pain Education Sessions, along with Airing Pain win Highly Commended Award at the Grünenthal Pain Awards for ‘widening access to pain education.’
2019 – The Self-management Navigator Tool wins a Best Poster Prize at the Annual Scientific Meeting of the Scottish Pain Research Community (SPaRC).
2020 – A pilot evaluation of the Self-management Navigator Tool to enhance communication in primary care consultations about chronic pain is published in The British Pain Society’s Pain News.
2020 – Open Access Government publishes 2020: Global Year for the Prevention of Pain.
2020 – Evaluation Support Scotland publishes Pain Concern Helpline: A Case Study; in 2022 they publish an update on their website.
2021 – Our helpline volunteers receive an Inspiring Volunteers Award in recognition of their service throughout the pandemic.
2022 – We present a poster Impact of a Patient-led Helpline on NHS Services at the scientific meetings of the North British Pain Association and the Scottish Pain and Research Community (SPARC).
First Broadcast 1st December 2022
What is mental defeat and does it have an impact on the experiences of those living with pain?
In this edition of Airing Pain, Paul Evans interviews the team at the Warwick Study of Mental Defeat in Chronic Pain (WITHIN Project), and research participants, as well as taking part in the study as a participant himself.
The study, which runs until May 2023, is investigating how mental defeat can influence pain sensation, sleep patterns, social activity, physical activity, and the general health of individuals who have chronic pain.
Mental defeat is defined as the perceived loss of autonomy in the face of uncontrollable, traumatic events. In the context of chronic pain, this can be explained as a loss of identity and self in relation to repeated episodes of pain.
Paul talks to the team about their experimental, lab-based study and the sleep-tracking survey, then undergoes the lab experiment himself. Afterward, he discusses how he found it and the possible outcomes of the research. He also interviews other participants on their experiences.
Research into mental defeat is in its early stages. It is hoped that the WITHIN Project will generate important information to help us further understand the influence that mental defeat has on distress and disability in chronic pain patients. This is essential listening for anyone wanting to know more about the research process or wanting to participate.
Issues covered in this programme include: Mental Defeat, pain research, insomnia, psychological effects of pain, chronic pain, patient perspective, acceptance and commitment therapy, research participation, pain thresholds.
Paul Evans: This is Airing Pain, a programme brought to you by Pain Concern, the UK charity providing information and support for those of us living with pain, our family and supporters, and the health professionals who care for us. I’m Paul Evans. And this edition of Airing Pain is funded by the Medical Research Council.
Nicole Tang: Mental defeat is a rather abstract concept. It is a concept that has been developed in the field of depression, post-traumatic stress disorder and even in the field of suicidality. It is only when I have spoken to a large number of pain patients themselves, when I ask them about – you know – how they feel, how they interpret their current situation, they talk to me about something – pain being the enemy. That they have to face it every day and they talk about how defeating it is, especially for their mind, and they talk about how the pain has taken over, how they feel they are belittled by the pain, and sometimes they even think that they don’t feel like they are human beings anymore, they feel like they are just a walking sort of ‘blob of pain’ and that is a very remarkable quote from one of the participants of our studies.
Evans: Nicole Tang is Professor of Clinical and Health Psychology at the University of Warwick. She is Principal Investigator of the WITHIN Project, that is the Warwick Study of Mental Defeat in Chronic pain. The study’s investigating how mental defeat can influence pain, sleep, social activity, physical activity, and general health and well-being, in people who have chronic pain. But that word ‘defeat’ ….?
Tang: By ‘defeat’ we try to use that to describe the deeper psychological impact of living day-to-day in battle with pain. When the pain is winning you will get to feel defeated, you will get to feel that you are not winning the battle, or the pain is taking over.
Evans: So, you are actually talking about a battle against the pain?
Tang: In a way, I mean, this is what we have heard from qualitative interviews with a large number of chronic pain patients when we talk to them about the psychological experience, how they deal with pain on a day-to-day basis. This is usually something that we get – particularly from those individuals who are most affected by chronic pain.
Evans: Now you’ve just been talking to the International Association for the Study of Pain Conference, and you showed them a series of images of how pain might feel. One of the images you showed was of a person sitting on the floor and knees up to their chest with flames all around them. That is total helplessness, that really, really shows what it’s like and how dark the tunnel is.
Tang: You can use the word helplessness to describe it, but I think mental defeat goes beyond just helplessness. If you think about defeat as something that could help to describe the deeper impact of chronic pain it has something to do with people’s self-identity – who they are, you know – what pain has made them become. Sometimes you will hear people say, ‘Wow I am not myself anymore, I used to run marathons but now I can’t even walk a mile.’ They would feel like they have been changed by the pain forever, they have been reduced. So, there is some element about that defeat concept that is not represented by just helplessness, and it goes beyond that.
Evans: The way you are saying it, it is final; defeat is final.
Tang: Well, I hope that is not the case because our current research is to find out a little more about that experience, to see how changeable it is over time and what we could potentially do to change that, because we believe that it could potentially be something that we could target in intervention, to help people to make a slightly different interpretation of their situation, because we thought that it is based on how people interpret their current situation in relation to the struggle with chronic pain. If we manage to change that perspective, there is actually hope somewhere that we can help people to see the light at the end of the tunnel.
Evans: Perhaps I wasn’t right to say it is final, but the perception may be final.
Tang: That’s what we hope will be the case and that’s what we are striving to understand. But unfortunately, we have also found out that there is a link between the sense of perception of defeat. If it is coming across as final to the person it could potentially increase the risk of suicide in this clinical population and so that’s why I cannot generalise whether or not it is final to such an individual. But we certainly hope that we can work towards understanding the concept and, if it is something that feels quite final for a fleeting moment, or for a short period of time and we can change that, then that is totally something that we need to do in the development of intervention – to not overlook, you know, how much pain could potentially affect a person’s self-identity and how they see themselves, their value in the world. To help them to see, you know, a positive side, you know, the future that can be changed, they can be an agent of change for themselves even though pain medication may not be helpful, even though there may not be an immediate cure for the chronic pain.
Evans: Nicole Tang. So, I am just thinking of the chicken and egg scenario. Which comes first? Defeat leading to pain or pain leading to defeat?
Jenna Gillett is a PhD student working with Professor Tang on the WITHIN mental defeat study.
Jenna Gillett: This is the golden question. The research in terms of defeat is actually fairly new, specifically to chronic pain anyway, in that we are … that’s part of what we are doing within the study – we are trying to track defeat over time to see does it change? Is it the same? Do certain things maybe increase defeat? Is it related to certain other factors, such as self-compassion, pain, self-efficacy?
We are looking at, sort of, how does defeat manifest in people? When you talk about it with other clinicians, when you talk about it with people who live with pain, lots of people go, ‘Yes I know exactly what you are talking about, I have seen this in my clinic, I have seen this on the wards, I have seen this in my friends when I go to my Fibromyalgia Support Group’. Lots of people know what you are talking about in terms of, ‘I can relate to the experience’, but not many people go, ‘Oh, so that’s called mental defeat is it?’. So, part of what we are doing is, I guess, getting the word out that, in terms of psychological variables, in particular, this is something worth looking at. It’s something that is really important in terms of helping people live well with pain – and mental defeat could be a really interesting and quite important variable that we need to be paying more attention to.
We have a Sleep and Pain lab so, as the name implies, we are looking at the sort of people who have issues with their sleep and also people who experience chronic pain. Typically, what you find is that people who experience chronic pain also have worse sleep. They might struggle to fall asleep; they might struggle to stay asleep. A lot of them will meet the clinical cut-off for diagnosable insomnia. So, this is again something that Professor Nicole Tang has paved the way for in this kind of area of research.
OK, so we are looking at people’s pain outcomes, but we also need to look at their sleep as well because this is a massive area of health that is really, really important to the overall experience and, again, living well with pain. So, the sleep tracking study fits in here. It’s a specific branch of the study. It has unfortunately closed to testing now, but we are so grateful for the people that did do it because the data is going to be so rich, and we are going to be able to really learn a lot from this particular design of this study.
Evans: That’s Jenna Gillett. [Now over to] Nicole Tang.
Tang: Sleep could potentially be one of the many pathways that will change the way in how you perceive pain. And change your mood because if you are not sleeping well you will wake up grumpy, you will wake up feeling irritated, tired, not feeling that you are ready to face the day. And so, it has a huge impact on pain management and so we felt that sleep could potentially be one of the pathways. And also, sleep is not detached from what we do on a day-to-day basis so we have a tracker where we can use that to monitor both sleep and physical activity during the day. So, we are going to look at the participants’ data to see how perception of defeat is linked to these day-to-day processes and then peoples’ pain experiences and outcomes.
Evans: Well one thing I would say is that after a poor night’s sleep, I certainly ache a lot more.
Tang: When people are sleeping better their physical activity level will go up because they feel better, they feel like their body is ready to take on the day and this is something that we have seen in our own research data where, without any intervention, following a night of good quality sleep people spontaneously would do more the next day. And so that’s the magical quality of a good night’s sleep. It is a daily therapy for people, it refreshes you, it helps you to face the next day and so sleep is really important.
Evans: But how in your study, using sleep and the pain experiment, how do these two things link in together?
Tang: So, they will be treated separately because we have three elements, like three branches of the whole programme of study so we are using a different approach . For the experiment we will be more focused on looking at the activation of mental defeat and its direct effect on, you know, your pain rating and pain anticipation, etc. For the other study – where we are testing the association between defeat, sleep, physical activity, and pain – we take it out of the laboratory in people’s day-to-day life, in their usual environment to see how the different pathways translate the sense of defeat into what we do and what we experience during the day. So, they are complementing each other but the data will be analysed separately.
But you are right when you said earlier that when you didn’t have a good night’s sleep you tend to ache more during the day and it is exactly what we found in experimental research when we introduce sleep deprivation in healthy, pain-free volunteers and even for those young adults with no pain whatsoever, if we take away the sleep they tend to complain about pain a little bit more and when we do testing they feel the pain more. So that is the interesting thing about doing research, you can actually see the association really clearly.
What we understand these days is that when the sleep disturbance has been here for some time it takes on a different shape and form so the mechanisms that maintain the insomnia would be slightly different from the mechanisms that trigger the insomnia, in the first place. And because of that change, the more we understand these days is that some of the cognitive behavioural treatments that work for people with insomnia in itself actually works really well for people experiencing pain and insomnia at the same time. And so, potentially, we can use a combination of drug and non-drug treatment or even just non-drug treatment to help people to sleep better.
Evans: Nicole Tang. Jenna Gillett again.
Gillett: We started this study right before Covid hit and that was a huge learning curve for all of us, I think, because nobody in the world knew what was going on, knew what was going to happen and we had to really sort of ‘adapt or die’ to the situation so to start with this study originally had a longitudinal questionnaire …
Evans: So, just explain to me, what do you mean by longitudinal?
Gillett: Longitudinal is ‘across time’, so with this longitudinal questionnaire we had three time points. So, we did a baseline timepoint, we did one six months later and then we did one another six months later, so overall you’ve got three time points across 12 months of data that you can then look at and you can track different factors, different things, mental defeat across those time points. So, you then get a snapshot of a 12-month period, if you like, of what’s kind of going on and you’re looking for trends and patterns in the data.
So, with Covid and us running a longitudinal sleep-tracking study we had to really adjust things in order to be able to run it from the comfort of people’s own homes. Now, whilst this was something that was borne out of a pandemic, which is obviously quite a negative thing that the world went through, it’s actually resulted in a real positive thing and the response that we got from the people who wanted to take part in this study was just overwhelming. In the end, we had over 200 people which was just really incredible that, even with everything going on during Covid, the aftermath of Covid, people were really wanting to take part in this research which was just really nice and is why we do it, so it was really nice to have that kind of feedback as well.
Evans: Jenna Gillett. One of the participants who took part in both the sleep and lab-based study is Lauren Pulsford.
Lauren Pulsford: I have rheumatoid arthritis, currently only diagnosed as being in my right knee, so basically my chronic pain is any movement of the joint – time on my feet, especially, is just always constantly painful.
Evans: What did you understand about mental defeat before taking part in this programme?
Pulsford: Some days you just feel like … well it’s that … essentially that depression feeling isn’t it of ‘what’s the point? If I’m going to feel like this every day for the rest of my life there’s nothing that’s going to make me feel better, there’s nothing that’s going to make me normal’. That’s essentially what I understood it as, as something very similar to depression.
Evans: Do you understand the principle of victory? Feeling victorious with your pain?
Pulsford: To me that would be, I suppose, situations where you work through it, you beat the pain, you think this is something that I can’t possibly do because I’m going to be in so much pain but then you go and do it anyway. So, for instance, for me, you know, that would be something where I was stood up and on my feet for hours at a time without feeling like I was going to have a breakdown because of the pain.
Evans: Why did you take part in the mental defeat research programme?
Pulsford: Just for … I’m only in my 30s, I shouldn’t be sat at home doing nothing, day in, day out, the rest of my life, because I’m constantly in pain. So, I sort of thought, this sounds like something that sounds like me. Somebody with chronic pain and feeling defeated because of that pain and it seemed like a no-brainer to help do some research in the hope that it can help people.
Evans: That was Lauren Pulsford who took part in the study. The sleep part is now closed but the lab-based part will remain open until May 2023, and the team need as many people as possible between the ages of 18 and 65 to volunteer. I’ll give contact details later, but I am within that age group, so I did volunteer. But for reasons of confidentiality and validity, we decided to separate my involvement as a participant from that of making this edition of Airing Pain. So, the day before meeting the rest of the team to record this podcast, I met Research Fellow, Kristy Themelis, at the University of Warwick Pain and Sleep Laboratory.
Kristy Themelis: The session today will take about two- to-two and a half hours. We’ll start off with just setting up the heart-rate monitor. Are there any questions, so far, that you might have?
Evans: I’m fairly nervous. Is that normal?
Themelis: Yes that’s normal. There’s a lot to take in and it’s maybe a new experience. Is there anything that you are particularly nervous about today?
Evans: Opening old wounds.
Themelis: OK, so talking about some of these experiences? Yeah, and it can be tricky to talk about some of these things. It can come with some strong emotions. At any point, if you would like a break, just let me know and we can stop it or have a pause. For now, I’ll just begin.
Evans: Right. I’m all yours.
Themelis: Right, so this is a heart-rate monitor. It’s a chest strap …. [fades away]
Evans: Kristy, we met yesterday because I have taken part in the mental defeat study. The boot is on the other foot now. So, what we went through were three statements from me. Looking back at a time when I felt defeated, which I take as being the lowest I’ve felt, another time when I felt victorious of my pain, i.e., feeling as if this is fantastic and everything is sorted, and then just almost like a control ‘how do I feel normally’.
Themelis: Yeah.
Evans: You put them into three sealed envelopes, one, two and three, and gave me a random number of which envelope to open without you seeing it, so you know nothing about … no prejudgement whatsoever.
Themelis: [back to the research interview]
OK. So that brings us to the next bit, which is where I will ask you a bit more about your experiences. We call it a thought-catching exercise where the aim is to identify some memorable moments in your life, where you either felt defeated, victorious or neutral in relation to your pain. So, what do I mean by that? By defeat, I mean disabling and negative thoughts about yourself in relation to your pain, victorious would be a strengthening, a positive thought about yourself in relation to your pain and neutral would be everyday and mundane thoughts about yourself. They are all very personal experiences, so there’s no right or wrong answer, and the thoughts and memories, which I hope you will recall, may come with some strong emotions, because they are important to you and represent who you are or who you are yet to become. So, is this something that you can relate to, something that you think … [fade away]
Evans: I found the process quite emotional – looking at the bad times – and completely the opposite – looking at the good times. Actually, the average times – I don’t know what I felt. Is this normal? I mean really getting people to almost dredge through how bad they have felt?
Themelis: Yes, so we are asking … in particular the defeating one … we are asking about very personal experiences. It often relates to a time where they felt very low. It can be quite difficult to talk about that or think about that. And it may therefore come with strong emotions, and we want to create a safe space where people are able to share some of these experiences.
Evans: We will return to my time in the lab in just a moment but, I want to pick up on something Nicole Tang said about research into the relationship between mental defeat and PTSD, or post-traumatic stress disorder.
Tang: What we have come to understand is that for those people who have experienced torture, a sexual or physical assault, if they did experience a high level of mental defeat they are also the people who are more likely to develop greater PTSD symptoms or, you know, poorer response to treatment in the future. And you can imagine the link between all these physical assaults and torture experiences with the sense of pain. It is almost like the physical tracker of that sense of threat to your personal integrity, for your identity and so there is an element of association between chronic pain and PTSD in that sense. And also from research, we know that there is a high level of comorbidity between chronic pain and PTSD. For example, if the pain developed as a result of an accident you could experience both at the same time, or if it is linked to a trauma, you can experience both PTSD and pain at the same time and pain being the trigger of memories of what happened in the past.
We know that there is an association between high level of mental defeat and high level of distress and disability among people with chronic pain. But we don’t understand what would happen when that sense of defeat is strong and activated. For example, will it affect your pain experience in itself, so when you are experiencing thoughts of, you know, you being reduced by the pain, you being someone defeated by the pain, would that affect your pain experience? This is something that we would like to test out in a more controlled experimental setting.
What we understand from our previous research is that it would definitely change your mood, it would change the way how you focus your attention. It will also change the way how you anticipate pain. But this time, we want to understand whether or not it will actually change your pain experience. So that’s why we are doing testing in a laboratory.
The other thing that we are doing is that we are trying to find out, over a longer period of time, whether or not that sense of defeat would change naturally or whether or not it would change in response to intervention. So, we are doing a longitudinal study where we re-contact our participants who have completed a survey for us, at six months and twelve months, so that we find out over time how people will be reporting in terms of the level of mental defeat and also the level of functioning. So, we are interested in, you know, the association between the sense of defeat and the functioning quality of life.
Evans: Nicole Tang.
Well, could there be another association with mental defeat? Acceptance and Commitment Therapy (ACT) is a recognised approach for the management of chronic pain.
Jenna Gillett.
Gillett: Yeah, it’s very interesting. Obviously, with Acceptance and Commitment Therapy, there’s a whole host of research that, you know, says, this is a brilliant sort of infrastructure and technique that we can use with people who live with pain and, as the name implies, Acceptance and Commitment Therapy, you are working with someone to help them accept where they are. And that’s might not be where they necessarily want to be, but it’s about accepting that this is where you are and that’s OK. And it’s sort of giving the individual back a sense of power, if you like. So, in terms of where defeat might fit in with that, it could be potentially down the road that maybe Acceptance and Commitment Therapy could be applied to people who experience mental defeat. We don’t know. The research is quite early on in terms of where we are at with it, but acceptance is definitely something that’s quite important, and I think would heavily feature in relation to people who experience defeat.
Evans: Jenna Gillett. Back to the lab with Kristy Themelis.
Themelis: This is where we have got our equipment when we’ve had people come in and have had sleep studies. We would have monitors connected and now this is where we do most of our testing. There are three tests in total. So, this is called an algometer and it has a little probe on the end and all it does is it measures the amount of resistance against that probe. So, I’ll place it on your hand in this case and then very slowly start to increase pressure. And I want you to say ‘Stop’ the moment it becomes painful. And I’ll remove the probe straight away.
Evans: So, this isn’t a macho thing?!
Themelis: Exactly [they both laugh] it’s not about how long you can last. So that’s a completely different test, and something that we also wouldn’t get past Ethics [laughs]. No, this is that very first moment and we call that a Pain Pressure Threshold. So, I will count down three, two, one, start and then I’ll start to apply pressure, so I want you to say ‘Stop’ the first moment it becomes painful. Are you ready? In three, two, one … [silence and a short pause]
Evans: Stop.
Themelis: OK, so behind you, on that cupboard, there’s a rating scale, zero to a hundred. I would ask you to rate that pressure pain. Zero being no pain at all to a hundred being worst pain imaginable.
Evans: I’d say it was a three.
Themelis: So, the second test is over here and it’s using this bath of water at core temperature, and, in a moment, I will ask you to place your hand inside. And then remove it as soon as it becomes painful.
And then, yes, take it out as soon as it becomes … right. So how much would you rate that? Zero to a hundred?
Evans: Zero to a hundred? I would say not far off sixty.
Themelis: Sixty? Are you happy to continue? Yes? So, the third one is actually a combination of the two, so this time I will ask you again to put your right hand inside. What I will do is apply pressure on your left shoulder, on there, and I want you to say ‘Stop’ the first moment the pressure becomes painful.
Evans: The pressure on my shoulder?
Themelis: On your shoulder, yes. So, it’s not the water, it’s when that pressure becomes painful. Now with the hand that goes in the water, try to keep it in as long as possible. If you have to remove it, just take it out and put it back in until the pressure is ceased. Three, two, one – go … [fade away]
Evans: To recruit participants during lockdown, the team used social media platforms of various organisations and charities supporting people with chronic pain, including Pain Concern. Successful to a point, but there were some anomalies. Paige Karadag is the Research Assistant with the WITHIN mental defeat programme.
Paige Karadag: Jenna was actually the one to identify that there were some responses that didn’t quite look human. This could have gone unnoticed if we weren’t so diligent in checking. Each time a person screened we would manually read their responses. It’s not really an automated computer that does that, it’s us that’s looking into their responses. Are they eligible?
But you have to think that if we are using social media and you get 50 responses come through, you know, overnight, that is a lot to check. At the time there was kind of an influx of 100 or 200 responses overnight and at first, we thought, ‘Wow, we’ve been really successful; we’ve clearly hit the jackpot and reached the right demographic here’. But then, once we looked more closely at the responses, there were things that just didn’t quite sit right. Would a human really put those responses? There were some letters that didn’t look like they were from the UK alphabet, so kind of tell-tale signs, but, in terms of did they meet the eligibility criteria at a glance, yes, because they put they had arthritis, they put keywords that would be associated with a chronic pain condition so, at a glance, they might have then been eligible to do.
Especially the questionnaire, which doesn’t have such strict criteria than, for example, the experiment does and, of course, with the questionnaire, there’s no face-to-face contact, there’s no phone call contact, really, other than emails. And I think one way to kind of look at it was it would be responses if someone had maybe English as their second language, so they could have been human and just weren’t very fluent in English. But after looking into it more carefully, it was clear that these, perhaps, were fraudulent responses in a block. And so, we were tasked with filtering through because, of course, there would be some genuine ones in there and we wouldn’t want to just scrap all of these responses if some of them were actually genuine people living with chronic pain who had given up time to take part in the questionnaire.
Evans: I mean this is completely baffling to me. A bot is not a human, it’s an automated artificial intelligence response to a certain thing.
Karadag: Yeah, and I think the key there is ‘intelligent’ because we tried lots of methods to prevent this from happening. So, we removed any examples because, at one stage, there was in the question ‘Do you have chronic pain?’ – for example … and then a list of arthritis, fibromyalgia and then we think that this intelligence essentially would use those keywords, put it in the box and that was a pattern that we were seeing. And kind of, as we developed the questionnaire, the bots could develop as well, so it was a very clever system and we’re not sure if they were targeting chronic pain studies in particular, because since then, we have found that other researchers have experienced this, and there’s a blog that has been put out by one who actually had to restart the study altogether, because they couldn’t decipher the genuine from the non-genuine responses. So, we did spend a lot of time to try and prevent any fraudulent ones from going through, and that included manually reading every person’s answer to be confident that this is a real person with chronic pain.
Evans: I find that really upsetting because research is so important that somebody – I mean it would have been somebody behind that artificial intelligence – should feel that it’s appropriate to attack genuine research projects that would help humans.
Themelis: [end of test with Evans] OK. Right, so we’re all done. So, let’s, shall we, go to the room next door? We can … it’s a bit more comfortable and we can do a debrief. Right, so you’re all done. How was that for you? [fades].
Evans: You’ll have to remind me of the order. We went through certain pain tests of putting your hand into cold water and seeing when it becomes painful – which, in my case, was pretty quick [laughs]. And then the pressure tests of putting something on my arm, increasing pressure and finding out when the pain kicks in there. Now, that was the control side, but I guess this was before we did the emotional stuff.
Themelis: Yeah. We first asked you about the three different emotional experiences and then we did the first round of tests of pain testing those, sort of, three tests that you talked about. And then I asked you to open one envelope and we kind of kept it secret from me, as the experimenter, as to which one you were asked to open and then repeated the test again, so there was a before and after thinking about a specific memory.
Evans: Actually, I can say now, the envelope that I opened was the ‘defeated’ envelope. We did all those physical tests again, whilst I was thinking about those emotions and thinking about what I had written. I was quite surprised actually that I did feel a little bit tearful doing it then. Why were you doing it like that? You know, what were you expecting to see or what will the experiment show? Not just with me – with all the participants.
Themelis: We only asked you to open one envelope, and, in this case, you had the defeat one, so we are particularly interested in those defeating experiences and how they might affect the way the body processes pain. But that on its own wouldn’t necessarily tell us much, as we want to know how does your body respond under different conditions? So, that’s why we also include a victorious memory, and I would expect if there was any effect to the defeat, that the victorious would be almost the opposite effect. But we don’t know that. We need to kind of look at the data. Then there’s the neutral one, for which we don’t necessarily expect much to happen.
Evans: Do you find that some people have the same experience that I’ve had? It’s actually [pause and exhalation of air] a little bit of a shock to dig through those memories.
Themelis: Yeah, yeah. And some people, when they come in, they might be a bit nervous, and it might be the first time that they are taking part in research, so my hope is that by having that face-to-face contact and having the time to talk about the research, and having time to listen about their experience, I can hopefully create an environment where they do feel that they are able to talk about it.
Evans: I’m only speaking from personal experience now. It can be quite cathartic, looking back at the defeated experience because, in my case, it was the only time I have ever told anybody and the confidentiality makes it really, really cathartic. Do other people find that?
Themelis: Yes, interesting you mention that. So, we’ve had a few people comment at the end that they’ve found it a positive experience to think about some of the … and talk through some of these things, even if it may be difficult to think about those memories. That’s what we are trying to do with this sort of research is really listening to people’s experiences and taking that as a starting point, and then look at it with our research head and what can we learn from this.
Evans: Well, what I find interesting, as well, is that you’re not my therapist, you’re not offering me solutions to go away with to try this, that, and the other. You are, excuse me, a blank sheet of paper. It’s totally confidential and I find that actually very rewarding.
Themelis: That’s really interesting to hear and I think you capture it really well. We are not in the position to provide advice or anything but if we can create an environment where people are able to share their experiences then – ah yeah.
Evans: Kristy Themelis. We heard earlier from research assistant Paige Karadag, about battling those internet bots, or robots, that had targeted the online recruitment programme.
[Back to interview with Karadag] OK let’s assume you’ve got all the right people, then there’s the eligibility. Who is eligible?
Karadag: Chronic pain is so subjective, and we have tried to be a really inclusive project in that we want all types of chronic pain, whether that’s primary chronic pain, secondary chronic pain, from another underlying long-term health condition, but what that means is for some participants who would fit, you know, kind of the textbook. They have chronic pain, it’s persistent, it’s intense, it’s there 80% of the time so, with those people, they think, ‘Yes this is me’. Whereas, for other people, who perhaps have episodes of chronic pain or it’s not intense, they might then think, ‘Am I actually eligible?’. And we have had people say, especially for the lab-based study, ‘I don’t want to waste your time, I don’t want to take up a spot that someone else could be doing’. And I think what’s really important is just having that communication and that dialogue with participants and, if we have any future participants who think, ‘Oh, you know, I don’t think I’m eligible’, please just get in touch to have that conversation because you absolutely are. Chronic pain comes in all shapes and forms.
Evans: Paige Karadag. Jenna Gillett again.
Gillett: So, if anyone listening is interested in participating in the lab study, we are looking for people who are aged between 18 and 65, who live in the UK, speak English, and experience chronic, non-cancer pain. If you are not sure whether you are eligible or not, do please get in touch with us because we’re happy to help and go through our specific inclusion and exclusion criteria with you. We can do this over the phone, or we can also do it over email, as well, so yes please do get in touch with us.
Evans: The study is running till May 2023, and I found taking part really rewarding, and I’d encourage others to get in touch with the team or check out the website. The address is a little long to remember, so I just put the words ‘mental’, ‘defeat’, and ‘Warwick’ into the search engine, and the Warwick Study of Mental Defeat in Chronic Pain came top of the list. Or you can email the team at WITHINstudy@warwick.ac.uk. They are really friendly.
As in every edition of Airing Pain I’d like to remind you of the small print. That was – we in Pain Concern believe the information and opinions on Airing Pain are accurate and sound, based on the best judgements available; you should always consult your health professional on any matter relating to your health and well-being. They are the only people who know you, your circumstances, and, therefore, the appropriate action to take on your behalf.
Do check out Pain Concern’s website at painconcern.org.uk where you can download all editions of Airing Pain and find a wealth of support and information material about living with and managing chronic pain, including details of how to order our Pain Matters magazine. And, of course, for more information about this edition of Airing Pain.
Now, it’s important for us at Pain Concern to have your constructive comments about these podcasts, so that we know that what we’re doing is relevant and useful, and what we’re doing well or maybe not so well. So, do please leave your comments or ratings on whichever platform you listen to this on, such as Apple Podcasts, Spotify, or the Pain Concern website. That will help us develop and plan future editions of Airing Pain.
Back to this edition of Airing Pain. Caroline Perry was another participant in the study. She has had ME and Fibromyalgia for three to four years. She can have the last words. A positive experience Caroline?
Caroline Perry: Absolutely, and if the research can go on to help others or the research can go on to have some kind of understanding why it’s the pain, then they know that it’s always a good thing, so absolutely, I’m so glad I did it.
Evans: And you’d encourage other people with pain to get involved?
Perry: Absolutely. I’ve got a couple of loved ones who I know, and I have actually passed it on to them because the more people who can do this the more research we can have from it.
Contributors:
End
This edition of Airing Pain has been funded by grants from the Medical Research Council. Pain Concern would like to thank all at the WITHIN project, University of Warwick, for their time and support.
Pain Concern is delighted to have achieved the Volunteer Friendly Award. The award is a user-friendly quality standard which supports, recognises and rewards groups who are good at involving volunteers.
We received feedback that our commitment and dedication to volunteers was evident throughout the Volunteer Friendly Award submission, as was our appreciation of volunteers. Our submission was considered excellent and feedback also highlighted how much people enjoy volunteering at Pain Concern, feel supported and get a lot out of volunteering with us.
Our resources and helpline support are for anyone in the UK who has chronic pain or supports someone who does (including healthcare professionals). To do this, over forty-five volunteers from across the UK and beyond support us in a variety of roles such as helpline volunteer, office, research, illustrations, marketing, social media, website, editorial, audio transcriptions, broadcast assistant and our Listener & Readers Panel members.
Our volunteers are fundamental to the success of the charity. The submission involved surveying volunteers, who fed back that they felt that their contribution is valued, meaningful and rewarding and 100% of respondents felt Our volunteers are fundamental to the success of the charity. Our Volunteer Friendly submission involved surveying volunteers, who fed back that they felt their contribution is valued, meaningful and rewarding and 100% of respondents felt their expectations, reasons and motivations for volunteering were being met.
We received the following comments in response to our submission:
‘Overall, the portfolio of evidence submitted by Pain Concern for the Volunteer Friendly Award is exemplary. It highlights the important and outstanding work and volunteering at Pain Concern which is making a real difference for people and the community.’
Mike Melvin, Volunteering Services Manager, ACVO,
‘An excellent submission for the Volunteer Friendly Award from Pain Concern, who have not only met but exceeded the requirements across every strand of the award. It was encouraging to hear the voices of your volunteers, who felt their contribution was welcomed and valued and that Pain Concern was inclusive towards all volunteers, regardless of background.’
Katy Penman, Volunteer Scotland
The Scottish Government recognises that volunteering matters and that it’s all about new experiences, feeling good and making a difference. Here’s some feedback from a couple of volunteers on their experience with Pain Concern:
‘I chose to volunteer with Pain Concern for many reasons; I really like Pain Concern’s objectives as a charity, and I believe Pain Concern is one of the rare charities providing emotional support, and practical advice for people living with pain. I find it fascinating hearing service users diverse stories on the helpline, and knowing every day is different with different topics of discussion.
I would tell other people who are thinking about volunteering that being with a charitable organisation is rewarding, and good for mental and physical health. Since joining the Pain Concern team, I feel I am not alone with my pain, and I truthfully recognise the pain of service users.’
Jo, Helpline
‘When I first started volunteering at Pain Concern as a research assistant, they explained that it was a partnership and although I would be helping them, they were also able to help me with any skills I wanted to develop or to get involved with anything I found interesting at the charity.
I mentioned during one of my weekly meetings with Sam my supervisor, that I was looking into starting a career within psychology and from reading job descriptions and person specifications, one of the main requirements needed was direct experience of working with services users who had physical and/ or mental health conditions… Sam then very kindly offered to train me on the helpline so I could gain direct experience of supporting people in their chronic pain journey.
This has been extremely beneficial not only to me as I have been able to increase my knowledge and expand my interpersonal experience, but it has also been beneficial to the service users. I love being a part of the helpline team and I have felt a great sense fulfilment.’
Katie, helpline
We are delighted with this outcome and welcome anyone who is interested in volunteering with us to look at our current opportunities.
What is mental defeat and does it have an impact on the experiences of those living with pain?
In this edition of Airing Pain, Paul Evans interviews the team at the Warwick Study of Mental Defeat in Chronic Pain (WITHIN Project) and research participants, as well as taking part in the study as a participant himself.
The study, which runs until May 2023, is investigating how mental defeat can influence pain sensation, sleep patterns, social activity, physical activity and the general health of individuals who have chronic pain.
Mental defeat is defined as the perceived loss of autonomy in the face of uncontrollable, traumatic events. In the context of chronic pain this can be explained as a loss of identity and self in relation to repeated episodes of pain.
Paul talks to the team about their experimental, lab-based study and the sleep-tracking survey, then undergoes the lab experiment himself. Afterwards, he discusses how he found it and the possible outcomes of the research. He also interviews other participants on their experience.
Research into mental defeat is in its early stages. It is hoped that the WITHIN Project will generate important information to help us further understand the influence that mental defeat has on distress and disability in chronic pain patients. This is essential listening for anyone wanting to know more about the research process, or wanting to participate.
Mental defeat, pain research, insomnia, psychological effects of pain, chronic pain, patient perspective, acceptance and commitment therapy, research participation, pain thresholds.
0:25 – Dr Nicole Tang, the Principal Investigator at the WITHIN Study of Mental Defeat in Chronic Pain, discusses the definition of mental defeat.
5:55 – Jenna Gillett, PHD student and study researcher, on the relationship between pain and mental defeat.
7:17 – Jenna Gillett and Dr Nicole Tang explain the sleep tracker study.
10:04 – Dr Nicole Tang breaks down the elements of the study – the laboratory experiment and the sleep tracker.
11:00 – Dr Nicole Tang discusses how having consistently disrupted sleep effects pain and what kind of treatments can be considered.
12:19 – The impact of the COVID pandemic on the study – adaptations and the unexpected outcomes.
14:00 – Participant Lauren Pulsford describes her experience of taking part in the study.
16:00 – Airing Pain Producer Paul Evans meets Research Fellow Kristy Themelis to participate in the lab-based experiment.
20:00 – Dr Nicole Tang on the association between chronic pain and Post Traumatic Stress Disorder.
21:00 – Exploring what happens to those with chronic pain have a strong sense of mental defeat.
22:00 – Explanation of the longitudinal study – looking at sense of defeat, pain and activity over time.
23:00 – Jenna Gillett talks about Acceptance and Commitment Therapy and its possible links with mental defeat.
24:00 – Back in the lab with Paul Evans and Kristy Themelis, measuring his pain pressure threshold.
27:00 – Paige Karadag, research assistant, explains the challenges of recruiting research participants online.
31:30 – Paul Evans and Kristy Themelis discuss the experiments that he participated in and how he found it.
35:30 – Paige Karadag and Jenna Gillett outline the criteria for research participants for the study, which will be running until May 2023.
39:00 – Participant Caroline Perry offers her take on why people should take part.
This edition of Airing Pain has been funded by grants from the Medical Research Council. Pain Concern would like to thank all at the WITHIN project, University of Warwick, for their time and support.
Pain Concern’s podcast can help you to further your professional knowledge.
Did you know that Members of the Faculty of Pain Medicine of the Royal College of Anaesthetists can gain Continuing Professional Development credits by listening to, and reflecting on, relevant episodes of Pain Concern’s Airing Pain Podcast?
The Faculty of Pain Medicine guidelines state that all doctors should keep up to date with the professional knowledge base through personal study, which includes listening to relevant podcasts.
These activities should be self-accredited, with one CPD credit earned for each hour of activity, when accompanied by documented reflective learning.
There are over 130 episodes to choose from, covering a wide range of topics on managing chronic pain, including neuropathic pain, arthritis, long covid and more.
If you have listened to Airing Pain to earn credits and have reflections to share, then please let us know your thoughts!
